Recent Articles about CHOPS Syndrome

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http://www.research.chop.edu/blog/finding-new-genetic-syndrome-ends-medical-odyssey-families/

New Genetic Syndrome Found, Arising From Errors in ‘Master Switch’ During Early Development
CHOPS Syndrome Sheds Light on Key Events in Human Biology

Released: 27-Feb-2015 11:00 AM EST
Embargo expired: 2-Mar-2015 11:00 AM EST
Source Newsroom: Children’s Hospital of Philadelphia
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Nature Genetics, online March 2, 2015; HD052860
Newswise — Philadelphia, March 2, 2015 –Analyzing a puzzling multisystem disorder in three children, genetic experts have identified a new syndrome, shedding light on key biological processes during human development. The research also provides important information to help caregivers manage the disorder, and may offer clues to eventually treating it.
“This syndrome illuminates a very important pathway in early human development—a sort of master switch that controls many other genes,” said study leader Ian D. Krantz, M.D., co-director of the Individualized Medical Genetics Center at The Children’s Hospital of Philadelphia (CHOP). Krantz, a medical geneticist, is an attending physician in CHOP’s comprehensive human genetics program.
Krantz is the senior author of the study, published online today in Nature Genetics. His co-study leader is Katsuhiko Shirahige, Ph.D., of the Institute for Molecular and Cellular Biosciences, University of Tokyo, also the home institution of first author Kosuke Izumi.
The investigators named the disorder CHOPS syndrome, with the acronym representing a group of symptoms seen in the affected children: cognitive impairment and coarse facies (facial features), heart defects, obesity, pulmonary involvement, short stature and skeletal dysplasia (abnormal bone development).
The central research finding is that mutations in the gene AFF4 disrupt a crucial group of proteins called the super elongation complex (SEC). The SEC controls the transcription process by which DNA is copied into RNA, enabling genes to be expressed in a developing embryo. The timing of this biological process is tightly regulated, so anything that interferes with this timing can disturb normal development in a variety of ways.
“Because the SEC involves such a crucial process in cell biology, it has long been a focus of study, particularly in cancer,” said Krantz. “CHOPS syndrome is the first example of a human developmental disorder caused by germline mutations in the SEC.”
Originating in the embryo, germline mutations are passed along to every cell in a developing organism, with harmful effects in multiple organs and biological systems. The mutated AFF4 gene produces mutated proteins, which then accumulate and cause a cascade of abnormalities in other genes controlled by AFF4.
“AFF4 has a critical role in human development, regulating so many other genes,” said Krantz. “When it is mutated, it can damage the heart and skeleton, and lead to intellectual disability, among other effects.”
The current study sequenced the exomes (the protein-coding portions of DNA) of three unrelated children treated at CHOP for a complex developmental disorder. All three patients had some symptoms similar to those found in patients with Cornelia deLange syndrome (CdLS), a rare multisystem disease long studied at CHOP. Krantz led research that discovered the first causative gene for CdLS in 2004.
The research team’s DNA analysis and studies of gene expression patterns determined that the new syndrome is genetically distinct from CdLS, even while sharing some common molecular mechanisms. Although only the three children in the study are known to definitely have CHOPS syndrome, Krantz expects diagnoses to increase with the dissemination of this discovery and the ongoing spread of faster, lower-cost gene-sequencing technology.
The research findings offer practical and emotional benefits for families, said Krantz. Physicians may now order more appropriate tests to monitor and manage specific medical issues arising from CHOPS syndrome. “This also means families and children can end their ‘diagnostic odyssey’—-the frustrating procession of tests and unsuccessful treatments that often occurs in trying to find an answer for families who have a child affected by a complex, undiagnosed disorder,” he added.
The researchers have shown that CHOPS syndrome is a de novo condition—-being caused by a new mutation arising in a single egg or sperm that went on to form the affected child, but not present in the patient’s parents. Therefore, doctors can reassure parents that this illness is extremely unlikely to recur in any subsequent children.
Like many other rare genetic diseases, CHOPS syndrome does not yet have an effective treatment; physicians like Krantz can only manage the symptoms. But the research team’s insight into the basic biology of this disorder may lay the groundwork for future treatments of this disease, and possibly others.
Note: After the embargo ends, see this blog posting about the “medical odyssey” experienced by families of children with this syndrome: http://bit.ly/1wE6f08
The National Institutes of Health (grant HD052860) supported this study, as did the Cornelia deLange Syndrome Foundation and MEXT, a Japanese government agency.
“Germline Gain-of-Function Mutations in AFF4 Cause a Developmental Syndrome Functionally Linking the Super Elongation Complex and Cohesin,” Nature Genetics, published online March 2, 2015. http://doi.org/10.1038/ng.3229
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www.research.chop.edu/blog/finding-new-genetic-syndrome-ends-medical-odyssey-families.
Finding New Genetic Syndrome Ends Medical Odyssey for Families
Individualized Medical Genetics Center at CHOP, The Children’s Hospital of Philadelphia by Research Communications
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At 3 foot 8 inches, 66 pounds, Leta Moseley is a tiny teenager with a big personality.
At 3 foot 8 inches, 66 pounds, Leta Moseley is a tiny teenager with a big personality. Seventeen years ago, her family embarked on a medical odyssey in search of a diagnosis for Leta, who has cognitive disabilities, speaks only a few words, and has lung disease and heart irregularities. A bad virus can land her in The Children’s Hospital of Philadelphia (CHOP) for several weeks, at times on a ventilator for breathing support. Yet, when she is healthy, Leta can take over a dance floor with her swirls and smiles.
CHOP medical geneticist and researcher Ian Krantz, MD, has been a tireless detective in his efforts to find out what genetic anomaly could be behind Leta’s constellation of symptoms. She had many characteristics in common with his patients with the rare multi-system disorder Cornelia de Lange Syndrome that Dr. Krantz has long studied. But her clinical features weren’t a perfect fit for this diagnosis, and genetic testing for Cornelia de Lange syndrome was negative. Dr. Krantz, Director of the Individualized Medical Genetics Center at CHOP, took Leta’s clinical history and photos all over the world with him to genetic conferences, in hopes of finding other children who shared Leta’s profile.
Over the past 10 years, Dr. Krantz and his team identified two other unrelated children (who live less than 200 miles away) with clinical features that seemed to match Leta’s. Using samples from all three children, his research team made the groundbreaking discovery “back home” in the genetics lab at CHOP. With the help of a breakthrough in sophisticated gene-sequencing technology that became available two years ago, they analyzed the protein-coding portions of DNA (exomes) and identified mutations in the AFF4 gene in Leta and the other two children. In genetic research, this is the equivalent of finding a needle in a haystack.
“This is a great example of how families and their doctors work together over many years to find answers and advance both science and the care of their children,” Dr. Krantz said. “Although it has been a long road to get to this point, it is really just the beginning, and we still need to work closely with the families to fully understand the significance of this discovery and how best to use this information to take better care of Leta and other children with this diagnosis.”
After years of mystery and misdiagnoses, Leta’s family finally has a name for her disorder — a new diagnosis called CHOPS syndrome. The acronym stands for the group of symptoms seen in the three affected children: Cognitive impairment and coarse facial features, Heart defects, Obesity, Pulmonary involvement, Short stature and skeletal dysplasia (abnormal bone development).
As this novel finding is disseminated in a Nature Genetics report, Dr. Krantz expects that CHOPS syndrome may be the answer for other parents around the world who have been on a hunt for their child’s complex, undiagnosed genetic disorder. They may find reassurance that CHOPS syndrome is a de novo condition — which means that it resulted from a new mutation arising in a single egg or sperm that went on to form the affected child but is not present in the patient’s parents — so it is unlikely to recur in any subsequent children.
“Ending the ‘diagnostic odyssey’ for families has a profound psychological effect, allowing for closure and an understanding of how all of these myriad clinical differences in their child are linked to a single underlying cause,” Dr. Krantz said. “It also ends a very expensive search for an answer often with many unnecessary diagnostic tests and blood draws. It allows us to find other children and adults with the same condition that in turn gives us a better understanding of the clinical issues and best options for management and to provide some idea of prognosis for families. We can more effectively counsel families about recurrence risk for themselves and family members. Most importantly, understanding the underlying molecular basis for the clinical findings in their children is the first step towards identifying targeted therapeutics in the future.”
In this interview, Leta’s mom, Lainey Moseley, described her family’s steadfast love for Leta along their unpredictable journey to the discovery of CHOPS Syndrome:
Q: Tell me about Leta; she seems to have quite a big personality.
A: It blows me away that so much is going on inside that little body of hers. It is so hard to really know what her potential is because we think she is brilliant and understands what is going on all the time. Yet, Leta has cognitive impairment, is nonverbal, has small stature, and she is pretty medically challenged with lung disease and pulmonary hypertension. Having said that, she does have a big personality given all her disabilities, and she endlessly amuses us with her antics. Life with Leta is chaotic and far from normal — the highs and lows are so extreme — but she gives us so much love in return. I cannot imagine our life without her.
Q: When you describe your search for a medical diagnosis for Leta as a “medical odyssey,” what does that mean to you?
A: Like everyone else, we really wanted to have a healthy child. We realized early on that Leta wasn’t hitting her milestones, and at one year old she was diagnosed with lung disease, but for 16 years no genetics doctors were able to give us a definitive genetics diagnosis. After many years, we gave up caring about a diagnosis; a label wasn’t going to alter the course of Leta’s life. But it was still unsettling not knowing how her disabilities were going to unfold. What was her lifespan going to be? Was the lung disease going to be a degenerative condition? We had no idea what her capacity was for learning or speaking. When you don’t have a diagnosis, you don’t know the end game or what to expect.
Q: How did you feel when Dr. Krantz told you that he had found this genetic glitch in Leta’s exome?
A: When Dr. Krantz called and told us that he had identified her gene mutation and that he actually had found two other kids like Leta, it was beyond exciting. I was so curious what these two other little kids, Liam and Nadira, would look like. Leta is so unique. It was hard to imagine that there were two other people in the world just like her. But the discovery also became important for other reasons. On an emotional level, when I found out her dad and I were not carriers of the AFF4 gene mutation, I realized that Leta’s medical issues were not my fault. All those years, I carried the burden that maybe I had done something wrong in my pregnancy that caused Leta’s genetic condition. A diagnosis let me off the hook of blaming myself. There’s nothing that I could have done differently to prevent it. This was just a random act of nature. That was a big turning point for me.
Q: So far, two other families are known to have the same genetic mutations as Leta. Why is it important for you to have this new connection?
A: It is important because we share a medical bond and now have a support group to compare notes about our kids, like what medicines are the doctors prescribing for their lung disease? What kind of communication devices do we each use? Does your child have the same hyperactive personality as mine? They are all so much alike, it is now almost like having triplets. I really am looking forward to getting to know Liam’s and Nadira’s families better. Having them in my life makes me feel so much less alone in my journey with Leta. Liam’s mom and I have become Facebook friends, and she was with me every step of the way praying for Leta when she was in the hospital last month on a ventilator.
Q: Overall, how has your experience been being part of Dr. Krantz’s research team?
A: The whole team has been phenomenal and so wonderful. They have been really supportive by keeping us informed about the ongoing AFF4 research. The genetics team is organizing a lunch next month so that our families can finally get together as a group. We’ve already learned that the research into the condition that Leta, Liam, and Nadira share could be groundbreaking in genetics and possibly lead to understanding roots of other genetic mutations. So that’s pretty exciting when it’s your child who is on the ground floor of that breakthrough. We’ve always thought that Leta is a superstar, but now she is a trailblazer in genetic research, giving other kids the chance to be born healthy.
Editor’s Note: For more information on how CHOPS syndrome sheds light on key events in human biology, read the press release. Also, learn more about Leta by reading the blog http://savingleta.com/written by her mom, Lainey.
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Dear Jimmy Fallon

>Dear Jimmy-
I am writing because my 17 year old daughter Leta has a giant crush on you. I know you are married and have a child, but I thought you might want to meet my daughter anyway. Every chance she gets she goes on her iPad, and plays one of your zany clips from The Tonight Show… I know , I know, you are thinking, so does the rest of America, but you see, my daughter has special needs and can not read or write, so the fact that she seeks your show out with intent is a fascinating mystery to me. She is only 3 feet tall ,and has a rare genetic syndrome that only two other kids in the world share with her that causes heart and lung disease. She has spent way too much of her 17 years in the intensive care unit at Children’s Hospital of Philadelphia. But Jimmy, I don’t want you to feel sorry for her. When she is at CHOP we lie in her bed and watch videos of you and you make her laugh, Jimmy…the kind of belly laugh that I can only get her to make when I kiss her stomach and make fart noises. Despite all her cognitive disabilities, she somehow manages to navigate the computer to find your YouTube skits every time she gets a chance. And her persistence to find your show, has made me seriously re-evaluate what the so called experts tell us about her limited cognitive ability. I think humor is a sign of great intelligence and I swear Leta gets the joke. Because of you, I now think we have all been underestimating her IQ. She has great taste in the skits she likes to watch. Her favorites are your JLo tight white pants skit, your lip sync contest with Emma Stone, and the Kevin Hart roller coaster ride,.. oh and then theres the reunion of Full House skit, and the Housewives of The Tonight Show episode… truth be told, Jimmy, she loves them all and would watch them for hours if I let her.…. You are silly in a way that seems to cross all racial, social, and economic divides, but I also wanted you to know that a special needs little girl in Philadelphia finds you hilarious. I have tested the waters to see if she like other comedians as well but
she has no interest in Stephen Colbert, or Jon Stewart or Jimmy Kimmel. (sorry guys) I have done a double blind trial to test my theory …and you win every time… You tickle her funny bone….and are right up there with The Wiggles and Spongebob in our house. I mean that as high praise. So I want to thank you for making her laugh. A few weeks ago, we thought we were going to lose Leta. Christmas Eve, she coded while in the CHOP pediatric intensive care unit. The amazing doctors got her on life support and she made a full recovery, but her medical issues are chronic and scary. So I guess I just wanted you to know that you continue to bring laughter to our house daily. And that is the greatest gift anyone could ever give us.

With Great Admiration,

Leta’s mom

Extreme Sports

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I picked Leta up from school for her holiday break this year after Camphill’s traditional Waldorf Christmas craft show, and she did not seem well. The color in her lips was bluish grey and she was listless. I rushed her home fearing the worst and checked her oxygen levels but her oxygen saturation was normal. Then in the middle of the night Leta began throwing up violently. I worried I might have to take her to CHOP, but by the morning she seemed completely fine again. Leta’s lung disease is unpredictable and at times her medical status changes rapidly. As quickly as she seems dire, we see her bounce back, no hospital intervention necessary. And by Monday the color had returned to Leta’s face and she was her usual high energy self, rocking out with me to Adele’s “Rolling in the Deep.” We were in the car headed to Kenny’s house in Delaware for the day so I could do some freelance work in Baltimore. But by 2p, Kenny called with concerns. Leta was making funny noises and was acting sluggish. I raced back to pick her up, saw her bluish grey lips. She was in serious respiratory distress. Leta needed to get to the emergency room and get on oxygen as quickly as possible. CHOP was 20 minutes away. Once we were there, X-rays and blood tests confirmed she had RSV, a very dangerous respiratory virus that attacks the lungs. Her oxygen sats were low but Leta was getting the care she needed and was content in my lap. What once used to terrify me has becomes commonplace routine in my life with Leta. And 8 hours later, as is often the drill at CHOP, we were wheeled from the ER to the PICU to spend a night, or two or more…,IMG_4911 I took an artsy picture of Leta sucking on her air like the caterpillar from Alice in Wonderland and posted it to Facebook. My 3am status when the rest of the world is sleeping. Two days went by and although it was clear that Leta would be spending Christmas at CHOP, life trudged on at home as usual. Jack was back from college, the other girls were out of school, and they were all decking the halls for Christmas; decorating the tree, shopping, wrapping,and eating lots of candy.

Back at the hospital was also unremarkable. As always, Leta was not happy being in patient and was giving all the nurses a run for their money. She is a difficult patient to treat. because she refuses to keep the various life saving devices on. The oxygen canulas that is supposed to blow air into her nose, she rips off. The IVS that hydrate her and pump the necessary antibiotics and other medications into her arms, she pulls off like a band-aid almost immediately after they are put in. And because of her defiant behaviors, she requires round the clock care. The third night of Leta’s hospitalization I slept with her in her bed, not really sleeping, more like resting with one eye open to desperately try to prevent her from pulling out her IV or oxygen. 7am Christmas Eve morning I was exhausted, just thinking about how to get a cup of coffee, when Leta’s alarms started beeping wildly. IMG_4978 I looked up at the monitor and saw her oxygen levels dropping rapidly. In seconds I watched it go from the 90’s, to the 70’s, then to the 60’s, then 50s… but no nurses were coming in… I jumped off the bed and began banging my fists on the glass partition and screaming, “Call a doctor, NOW” I …. I looked back at the oxygen monitor and it read 30%. A nurse ran in, assessed Leta, and hit the CODE BLUE button on the wall. Leta was not responsive. This was really happening, I texted her dad, “CODE BLUE!” so he knew to get down to CHOP immediately. The room filled up with doctors and nurses. While one nurse began manually bagging Leta to force oxygen into her lungs, the lead doctor started asking me questions. But I felt light-headed and sick to my stomach and was having a hard time concentrating on his voice. I knew the doctor was asking me for consent to intubate Leta but all the other sounds in the room were so loud it was hard to focus. “We need to do this NOWWwwwwww…!!” the doctor seemed to be screaming ….” of course there are riskkkkks….she could go into heartttt …failure……but we have no other options.” I nodded my head in consent. But I thought I was going to pass out. Everything was suddenly in slow motion; my adrenaline rush so intense I felt like I was having an out of body experience. Her dad walked in and glared at me. Why the anger? Not what I need right now, but he hadn’t believed my earlier text, until the doctors had called him. I looked at my phone and I apparently was an asshole for crying wolf so early in the morning. At least He did not disappoint in ramping up our dysfunctional textual warfare even now.
For the next 10 hours he and I were forced to share the same physical space but we might as well have been on different continents. We did not speak to each other or even glance in each other’s direction. He occupied a chair near Leta’s bed, his face down in his hands. I perched on a window-ledge, mindlessly trolling Facebook and reading the AP and CNN newswires. I posted a status update that Leta had taken a turn for the worse, and asked friends to pray for her. I did not have anyone in the hospital to hug me or hold my hand, but almost immediately I had friends around the world responding with concern and an odd but incredibly comforting social media prayer vigil for Leta began; “Facebook Love” when you don’t have it in real time. I was embarrassed by all the attention but glad to have the support. It took the doctors five hours to get Leta safely on the ventilator. At that point, Rick and I paced the halls and he broke the silence…a detente perhaps? Nope, just him announcing that he was leaving to go get something to eat. It did not occur to him to offer me anything. Alone again, my mind wandered to that dark place where I imagined Leta not surviving the night or passing away Christmas Day. I considered calling the other kids to tell them to drive down to see Leta one last time, but I decided to wait. Is this how her story ends? Luckily no.

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Leta remained on the ventilator for two more weeks. The other kids came to visit often, especially Jack who would crawl into bed with her and hold her hand. But Leta was so heavily sedated that she was more machine than child. The kids pretended to be stoic, but I knew inside they were scared and struggling. Their sister’s life was hanging in the balance and completely at the mercy of the machines. This was such a big dose of real life for my kids to handle.

Outside the PICU time marched on as usual into The New Year. The girls started back at school and Jack returned to college. And at CHOP Leta continued the fight each day to take one or two breaths above and beyond what the ventilator provided. Her strength gave us all hope. On January 10th, her doctor was adamant that we had to try to extubate her immediately. Leta began riding the vent, not breathing on her own above the machine. She was also retaining too much fluid which made her face and arms balloon up, and and she was increasingly at risk of a central line IV infection. In my mind, she did not seem well enough to be making any changes, but apparently we did not have a choice. Getting her off the machine was now the priority even if there were risks. After a weekend of hesitations, Dr Wuu finally pulled the tubes out on a Sunday afternoon. He wanted to make sure that he did the extubation that day before the shift changed and a new attending doctor, less familiar with Leta, clocked in. And once extubated, Dr Wuu stood by Leta’s bedside for 4 hours, holding the oxygen mask over her face and watching her intimately as Leta took each breath on her own. Even though Dr Wuu’s shift was over, it was clear he was not leaving until Leta was out of harms way and did not need to be re-intubated. He remained in the hall, under the guise of writing notes, but we knew otherwise. He steadfastly watched over Leta for another 5 hours. And because of his vigilance and the continued watchful eyes of nurses into the night, Leta made it off the ventilator successfully.

That night as I drove home along the familiar path of Boathouse Row on the Schuylkill River, I burst into tears, crying so violently, I was gasping for air. Eventually, I calmed down, my breathing settled and I was able to take deep breaths again. Probably the first real ones I had inhaled all month… It felt like I had been holding my breath this past month, waiting for Leta to get off the machines. And now we could both breathe again.

I am humbled by the tremendous medical care at CHOP that enabled Leta to survive this ordeal. I know she came very close to a dramatically different outcome that I am thankful I am not writing about. When friends ask me what I did over Christmas break, I tell them that I went bungee jumping, rock climbing, skydiving and white water rafting. In other words, I spent a month in the hospital with Leta on life support. And not unlike other close calls these past 17 years, we peered over the edge of the cliff, but this time we jumped, a Code Blue free fall….our only net was the doctors, and the power of prayer for Leta to survive. If you were holding Leta in your prayers this past month. Thank you. It worked. xo

Columbus Day Weekend

Saturday was just another day. Lucy and Ava had to get up early for a Columbus Day Weekend Soccer tournament. The Hunter Tournament at Abbington High School. The rain was coming down so hard by 7am that my hopeful pre-caffeinated prediction was that the tournament would be cancelled. But no such luck, the games were on!. And that meant I only had 15 minutes to dig out last winter’s Under Armour, find extra pairs of matching socks, and prep the chocolate chip waffle batter. The girl’s were cranky. Lucy didn’t have a ride and she was screaming something about Ava using her favorite tea mug. Next she grabbed the mug and threw it, tea, honey, and milk, out the front door. “ Really Lucy?”

These pre-dawn battles make no sense to me. I did not have a sister growing up and don’t understand why sisters get so possessive over inconsequential things like sweaters, nail polish, pencils, half eaten sandwiches, and now tea mugs. “It’s mine! “ makes me cringe. Having lived such a medically fragile life with Leta, I have no patience for the petty fighting over THINGS. I am allergic to sweating the small stuff. And besides, I was late for picking Leta up at school for the weekend. In a moment of calm, I asked the girls. “Are you bleeding?” “Do we need to call an ambulance?” “Is your life in jeopardy?” “ If your answer is “NO” to any of the above, then get over yourselves and get ready for the tournament.” This is the only area of parenting where I seem to be able to assert my mama tough love. The girls know I will do anything for them, and they normally take full advantage of my pushover status. But this morning, I had run out of patience. I left; slamming the front door behind me. And I set out in the rain to get Miss Leta.

She had spent the night at Narkie’s house, her Camphill caretaker extraordinaire, who had now moved off campus nearby with her boyfriend. Narkie offered to watch Leta on Friday nights if we had conflicts. When I arrived to pick her up, Leta was so excited to show me the loft where she had slept. We said our good-byes and then I made a quick pit -stop at Camphill to drop Leta’s winter clothes off at Rowan House, her new dorm. Carsten, one of her house parents, and Leta were waiting on the porch. He handed me her bag of medicine, while Leta ran to the car. I buckled her in, put the medicine in the front seat and then carried the box of clothes inside. The other kids were eating breakfast so I stopped by the table to say Hi. One of the older boys, kept introducing me….”Lainey Moseley is here..Lainey Moseley is here….that’s Leta’s mom. She lives in Philadelphia.” I was so impressed he knew all this information about me. I’m used to Leta’s non-verbal status and I forget that many of the other kids in her house are really talkative.

I ran back out to the car, and Leta was sitting in her car seat as before, but something was wrong. She was not buckled, and the medicine bag was now on the floor of the back seat, unzipped. And all the medicine bottles were scattered on the floor around her. Except one. A 20 oz container of liquid Potassium that Leta was in the act of chugging. I screamed her name. The medicine was dripping from her mouth, with an orange Got Milk? mustache above her upper lip. And a bottle of zyrtec, with it’s cap off, lay empty in her lap. Leta was all smiles, probably thinking I was going to praise her for taking her medicine by herself. ”Leta, SHIT…what have you done…shit, shit shit…this is serious,” I yelled. And it was. High doses of potassium can kill you. I ran back inside to find Carsten, who handles all her meds, and asked him how much had been in the bottles. His reply was not what I wanted to hear. He had just refilled both prescriptions this week…triple shit!. That means she had already managed to drink 40 0z of medicine. My mind raced through the options: Drive an hour to CHOP, try to make her throw up, call an ambulance?…how much time do I really have? Carsten suggested I drive to The Paoli Hospital. I agreed it was probably the safest option.

Leta has taken potassium medicine her entire life because of her lung disease or what is also called pulmonary edema. This means her lungs fill up with extra fluid, and she needs to take heavy doses of diuretics every day to get rid of the fluid. But the diuretics also cause her to lose potassium which is critical for metabolic and electrolyte balance. I knew enough about the medicine to also know that if she had too much or too little potassium it could do very bad things to her body, very quickly. In medical jargon it is called “K” . Too little K in your body can lead to kidney failure, Too much K can lead to lower pulse rate and heart failure. Or is it the other way around? My mind was spinning. I did not have time to do a Google search. I strapped Leta back in her car seat and GPS’d Paoli Hospital. All I knew was that my god-son had been born there 12 years ago and the GPS said it was 23 minutes away. The odds were in my favor that neither the potassium or the zyrtec would be immediately toxic, but then again, I just didn’t know.

My mind tends to race to very dark places quickly when bad things start to happen, so my thoughts were already wandering to the reality of Leta having a heart attack in my car, or just collapsing and dying before I made it to the hospital. I kept looking back at her. She was all smiles and seemed to be acting normal. But I was not going to relax until I was safely in the arms of a hospital doctor. I managed to get to The Paoli Hospital in 18 minutes and rushed her into the ER. The waiting room was empty and a doctor saw her immediately. She was stripped down to her underwear, and an ECG was ordered. Her heart needed to be evaluated for any signs of abnormality. If she was about to go into heart failure this test would pick it up. I could tell she was in good hands, but I still doubted my decision to bring her here and not to CHOP where they knew her. This hospital had no pediatric gowns, and the IV team was struggling to get an IV into her arm for blood work. At CHOP, the Pediatric Phlebotomy team knows she has wiggly tiny veins and knows she will spit at you in protest as the team trys to do the stick. In anticipation of Leta’s behaviors, the CHOP nurses always arrive wearing plastic face guards. The nurse at Paoli was not very happy with her spitting in his face, so he called in two burly techs for backup. They wanted to hold her down in a straight jacket position to get the IV in. “Absolutely Not” I argued. “Leta will eventually comply, she just needs to like you first.” I knew the bloodwork needed to be done quickly, but I also was not going to put Leta through more trauma. Matt, the nurse, left us alone in the room and soon returned with a dancing chipmunk toy. Leta was amused and calmly stuck her arm out for the IV team. We got the bloodwork done, but was she going to be ok? The bloodwork results would take an hour to be processed and would determine what happened next. While waiting, Leta wandered around the room, asking for crackers, getting into her usual trouble opening any closing all drawers that were not locked shut. And then she started peeing all over the floor, a lot… and she kept on peeing. A lot. I called the doctor in and he seemed relieved and said her peeing all over the floor was really good news. Leta smiled. As far as she understood, this was just another day at a hospital getting attention from some nice doctors. Her normal. The doctor went on to explain that peeing meant Leta’s body was not absorbing dangerous amounts of the ingested potassium into her blood system. Her body was smartly self regulating her electrolyte levels. And shortly thereafter, her bloodwork came back and confirmed this result. Her electrolytes were normal and Leta would be fine. After only 3 hours at Paoli Hospital, we were discharged. I realized that we could still make Lucy’s 1pm soccer game if we hurried. I had no clothes for Leta except her soiled ones, so I found some of Ava’s oversized pajamas in the trunk. I wrapped Leta in my coat, put her summer sandals back on without socks and we headed to the game. Leta didn’t care what she looked like, she was excited to go watch some BALL!

Soon we were on the sidelines cheering the U14 girls Blue Lightning Team on to hopeful victory. I looked around at this normal fall day, parents laughing and cheering for the girls. And I realized that like Leta this is not my normal. And I thought about where it is that I am most comfortable. What makes me feel alive, if not at a kids soccer game? And I realized that my normal is with Leta in the hospital… I don’t think I’m at risk of being Munchausen by proxy, needing to rush Leta to the hospital for my own sense of meaning. But that is what I have been forced to do the past 17 years and it has defined my life. Leta’s bouts of respiratory failure, kidney failure, dehydration, tongue lacerations, falling down the stairs and now toxic poisoning has been constant. Everything else, even this fall day, seems just so…ordinary.

The Long Drive Home From Maine…

photoIt’s only an 8 hour drive from Scarborough, Maine to Philadelphia, but after 2 weeks of vacation with Leta I was dreading the long drive home. I decided to pull an all-nighter and leave at 8p in hopes that Leta would sleep.

The car was packed, 2 sandy dogs sat waiting, Ava and Lucy flipped a coin for their seats; Lucy winning and in shotgun. Leta, so excited to go “Home”, kept repeating the word 100 times, “HOME,HOME,HOME,“ perhaps believing, like Dorothy in Oz , she would magically return that instant. But Leta has no sense of time or distance and
refused to get in her car seat to start the long journey. In fact, It took two adults, the cajoling of my boyfriend’s deep voice by phone, and a lot of spitting and hair pulling by Leta, to not only force her into the seat, but get the seat beat buckled and attach an extra locking carabiner for safe measure. I was NOT going to let Leta Houdini her way out this time. None of this made Leta happy. She screamed, she flailed, and she grabbed Maya, the golden retriever’s tail, and bit it hard. ( Maya remained unfazed). Ava on the other hand, growing increasingly annoyed with the seating arrangement, insisted on switching places with Lucy. All this drama and we had not even left the driveway. Jack, having bolted on a Bolt bus out of Portland 2 days prior, was showing his time-learned self-preservation. The girls, unfortunately, still too young to find an escape route had no choice but to be trapped in the chaos.

I called Mark in tears. How am I going to do this for 8 more hours? I haven’t pulled an all-nighter since college? I must be insane to try and drive by myself through the night like this. He assured me that Leta would burn herself out quickly and fall asleep. And so we sat, waiting for her to calm down. Our landlord and neighbors also stood by politely waiting to give the customary good-bye waves.

I started the car, turned up the AC…but Leta was not giving up the fight, the noise decibels were only intensifying. Lucy & Ava were tired and frustrated. And they nudged me with a chorus of “MOMmmmm, let’s go!” And so it began. I gripped the wheel, put the car in reverse, and looked back in my rearview mirror. only to be reminded by its absence that Leta had broken the mirror off its hinges the day before.(Note to self to get it fixed once I returned to Philadelphia.)

And Mark had misjudged Leta’s capacity for screaming. She showed no signs of giving up the fight for the first two hours. And in that time, I pulled the car over twice, once to fix the bike rack that had inexplicably fallen so low that the bikes were dragging on the highway. And once to to find my phone which had fallen under the seat. Somehow, Ava managed to fall asleep as signs for Portsmouth, NH flashed ahead. At least, we had made it out of Maine.

And that left Lucy in the trenches next to Leta. She knew from experience that her tour of duty would last 8 long hours. She was guaranteed endless hair pulling, no sleep, inexplicable spitting and pinching. But she was not complaining. Instead, Lucy seemed to be rising to the occasion. Each time I looked back at her ( not in my rearview mirror) she had things more and more under control. Instead of defending herself against Leta’s attacks and complaining, Lucy was developing a strategy. She was patiently and methodically putting up with Leta’s asaults and trying her best to redirect her to music and pictures on her i-phone. Lucy was speaking to Leta softly, asking what was wrong, holding her hand, trying to make her laugh. And it worked. Slowly, Leta responded and slowly she stopped screaming and eventually she calmed down enough to fall asleep. I was so proud of Lucy. I had seen Jack at a very young age know intuitively how to calm Leta down, and now Lucy at 13 had also figured it out. This is not something you teach kids or instruct them how to do. It is a form of learned empathy as a survival strategy.

And so thanks to Lucy, we drove in silence through Boston and onto the Mass Turnpike. Maybe we would all get home safely after all?

In Hartford, I stopped for gas and I suppose the noise and change in lighting woke Leta up. She quickly was reminded of her status as a prisoner and began screaming and flailing around again….second verse, same as the first…she tried to bite the dog, pinch Lucy, spit, scream, grab at anything she could find to hurl towards the front seat. Again, we were drowning in the noise, that is all of us but Ava who continued to sleep. Holding back tears, Lucy begged me pull over at a hotel for the night or at least, unlock Leta from the car seat, I agreed to the latter. Only 4 1/2 hours left to go.
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Victorious, Leta quieted down immediately, but in her usual fashion she got busy trying to squirm into the front seat, play with the GPS and radio, grab my phone to call her dad, pinch the dogs, search for snacks, wake Ava up…..all the things that make driving 60 miles per hour on the highway in the dark dangerous.

But Lucy, egged on by my praise of her as the Leta whisperer, was handling things. She got Leta to snuggle under a blanket and listen to music, and again Leta fell asleep. This dance continued for the next 2 hours. Leta waking up, Lucy calming her down and putting her back to sleep. I know Lucy was tired but she was not letting on that she couldn’t handle it. At one point, she did start to get annoyed and I snapped at her unfairly. I needed her so desperately to make this drive work, I couldn’t have her quit. And finally at 2am when we had reached the New Jersey Turnpike, we were on the home stretch; all was quiet. Instead of falling asleep, Lucy told me that she was going to stay awake to help me stay alert and get home. She didn’t want me to have to do this drive alone. And that is what we did. Arriving at 4am, we were exhausted but safe.

So many milestones of my kids lives are fading into the past..forgotten memories now. And without pictures, or written recordings, I can’t always seem to place some memories, like their very first words, or when they first sang me the entire alphabet song, or learned how to tie their shoe laces. But with Leta as a marker, I think I will always remember my kid’s moments of real growth into the wonderful people they are becoming. The milestones being the events that shaped their being kind and empathetic to the core. And I proudly sit on the sideline taking no credit. Because each time Leta was their teacher.

An Officer & A Gentleman

IMG_0299My mother used to say when things got tough: ” It’s time to call in the Reserves.” I actually never knew what she meant when I was younger. She often had a habit of coming up with some really wacky expressions: “… and I’m not just singing alligators” she would scream when she was really mad at us or threatening to send us to our rooms. But never-the-less, this phrase, “calling in the Reserves”, stuck with me. So when a few years ago, things got really really tough; finances were tight, my marriage was falling apart and I was suddenly a single parent with 4 kids, I realized that NOW was indeed a good time to blow into a horn and call the cavalry or whatever my mom meant. And that is exactly what I did. .IMG_0423

In the summer of 2009, I desperately began looking for someone to help me juggle Leta and the other 3 kids. And one day I scheduled a meeting with the daughter of a teacher at Leta’s special needs school. I asked Jasmine to meet us at our pool, but she didn’t drive, so she asked to bring along her boyfriend. Jasmine was lovely. She had quite a lot of experience with special needs kids and was very mature. I was immediately impressed. But then I heard a “Splash!” Leta was in the water. But on closer inspection, luckily, so was Jasmine’s boyfriend. Leta did not know how to swim but she was all smiles, clearly thrilled to be getting attention from this dude. Jasmine introduced me to Kenny and his first words were, “I betcha I could teach this little girl how to swim!”

And the rest is history. I hired Kenny on the spot! I didn’t know anything about him, except he was 6 feet 4 inches tall to Leta’s 3 feet and he had a special soulfulness that made me suspect he could handle almost anything. He had no experience caring for special needs kids, ever.

And as we talked I discovered that besides struggling to hold on to a part-time job at GameZone,he had spent the last 2 years in the Army… wait for it….RESERVES! I could hear my mom laughing in heaven as she handed me this gift. My own Army guy or Army manny for Leta. It all made sense. If Kenny could survive the Army, then he might just have a chance handling Leta.

And that is the story of how I found Kenny or Kenny found us. He is one of Leta’s best friends and conversely, he describes Leta as the second coolest girl he knows. Kenny has been in our life now for over 5 years, off and on, mostly in the summer. He has attended many of Leta’s Spongebob birthday parties, he has endured being buried in the sand up to his neck at the beach just to amuse Leta, and he has dealt with Leta stripping down butt-naked at Target. He has flown with her by himself in his full army camaflouge fatigues, giving Leta her own movie version of “An Officer and a Gentleman,” as he carried her off the plane, and he has never let on that Leta is difficult. In fact, Kenny makes it look easy. And Leta adores him.

Last week, Kenny was hired at Camphill to work in their transition program at Beaver Farm. He is helping assist a 21 year old boy with severe autism. When I asked Kenny how it was going so far, he said with passion that “this is his dream job.” I am so thrilled for him. The universe works in mysterious ways bringing Kenny into our lives which propelled him in towards a profession caring for special needs children. It seems to be his calling. He is gifted in the art of caring for kids with differences. And I am proud to call him Leta’s friend.
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(oh! and that first summer, Kenny did teach Leta how to swim with water-wings!”)
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Be still my beating heart…

DSCF3793I went with Leta’s 10th grade to The Franklin Institute last week. Her class has been studying the anatomy of the heart. For those not from Philadelphia, The Franklin Institute is famous for it’s larger than life organ: a maze that allows you to walk up and down the heart’s ventricles, aortas and lungs accompanied by the pulsating beats of the heart’s walls, “thump-thump, thump-thump…thump-thump,” Kids love it. Leta has always been too scared to enter. But yesterday she willingly followed her peers into the heart of, well, darkness… And it was clear she understood where we were because she kept pointing to her own heart as we climbed and descended the inner stairs. Once out, Leta was ready to roam. We ventured into the electricity room, and then into the flight and aviation exhibit. But Leta moves fast and needed more action. I tried to slow her down, but I knew where she wanted to go. We passed a really interesting National Geographic exhibit in the hallway, the 50 best Photographs ever taken, but no such luck. Leta’s focus was on finding “BALL!” Her love of soccer seemed to give her laser focus as she navigated the elevator, made a quick left, then right, then sharp left again, finding her way to the virtual goalie net on the 3rd floor Sports Zone. And never one to wait her turn, Leta barged into a group of boys already playing the game and grabbed the soccer ball away from them. Predictably, the boys scattered quickly, none of them sure what to make of the 3 foot tall tyrant with attitude.

But then I noticed that one little boy from the group did not leave. Despite his friends looks of dismay and teasing, he stayed behind. And he watched Leta kick the ball into the goal a few times. He watched her kick the ball and miss, but raise her arms in Victory anyway. And then he quietly joined in by getting her the ball each time she kicked it. And as he handed her the ball, he gently coached her on how to do it better the next time. “Kick the ball like this,” he encouraged. “Good Job,” he said, “You got two goals,” he praised the next time. I was charmed. This little boy was no older than 10 or 11, but he was clearly special in his own right. I asked him his name. He said Trevor or maybe it was Travis. I don’t remember now, but I told Leta to give him a turn, which she did a few times. And then they began to work out a rhythm of playing together. When he got a GOAL, Leta “high- fived” him, and he did the same for her. But soon, the game ended as quickly as it began. Trevor got bored and wandered off. I made a quick search of the room hoping to spot his mom. I wanted to find her and tell her how kind her son was to Leta, but I saw he was with a school group.

My youngest, Ava, was telling me the other day how much she missed our first house. She said she didn’t miss it because of the wonderful birthday parties, or the magical Christmas Day celebrations. She misses drawing at the kitchen table, catching butterflies in the backyard, and hiding in my closet during a game of hide and seek. Ava misses the little moments. We all look for the big moments in our lives. We think they define us. But I am starting to think that the smaller moments have more meaning.

Trevor’s kindness to Leta was just this; a small moment in time,easily overlooked. But maybe those are the ones worth paying attention to; the ones worth remembering. DSCF3817DSCF3783DSCF3804

a $16.95 game changer

car buckle

There are some inventions that all would agree have changed the way we live our lives. None of us can imagine getting through a day without electricity, computers, the internet, cell phones, cars, TVs, GPS navigation systems, antibiotics, the microwave oven, or indoor plumbing, to name a few. These inventions allow us to be a modern civilization able to further accomplish mind blowing advances in space travel, and medicine.

But on a more mundane level, what would we do without the smaller everyday inventions like paper clips, q-tips, safety pins, plastic coffee twirlers, rubber bands, post-it notes, sandwich bags, bubble wrap, shoelaces, zippers … My survival has not depended on these inventions, of course, but they are wonderful to have at my fingertips as I stumble through my day.

But then the other day I came across a small plastic invention,retailing on Amazon at $12, $16.95 with shipping, that has become a game changer, perhaps even saved my life.

Curious right?..please keep reading.

For anyone that has or has had a precocious toddler or clever special needs child, you will nod your head in agreement that car rides are hell. Those tiny little Houdinis quickly learn how to unsnap, unbuckle or just wiggle out of most car seats on the market and there is nothing you can do to contain them while driving.

SO I am here to hawk the amazing plastic seat belt buckle guard. BECAUSE until I found it, there was not a seat belt, a buckle, a 5- point harness, a strap, a dog leash, or a human that could keep Leta in her car seat while on the road. One caveat, Leta sits in her carseat perfectly for her teachers at school or any babysitters that take her out. It is just for our family that she is a holy terror.

And as many friends and family witnessed over the years, driving with Leta was as crazy as someone saying that they were going to perform open heart surgery while knitting a sweater. You can’t do both, and you definitely cant do them both safely. Leta would unbuckle within seconds of being strapped in and would then bounce around the car throwing things, taking her clothes off, eating groceries, pulling my hair, hugging me while driving, trying to change the radio station, grabbing my phone, opening windows, or throwing things out the windows. It was not unusual on any given ride to hear crys of “Leta is biting me” or “she’s got a clump of my hair in her fist and it really hurts.” Sometimes, I would have to slam on the breaks and stop in the middle of the road just to save one of my other kids, or worse their friends, from Leta’s crazy and dangerous hair pulling, biting, pinching assaults. Usually, this would happen later in the afternoon when her behavior meds wore off or when she was hungry.

It is not an exaggeration to state that driving with Leta, since she figured out how to unbuckle her car seat at age 6, has been a death defying feat. My son, now 18, learned to drive with her in the car and before he went to get his license I checked off his 15 hours of defensive driving practice with assurance because he had maneuvered many hours of driving with one arm on the wheel, the other fending off attacks from Leta or protecting the front from flying debris; pens, wet diapers, food, lone sneakers…the usual stuff left in cars that normal families dont think twice about as dangerous cargo. Just to be clear, Jack also learned how to drive in snow and rainy conditions, but the Leta defensive driving will serve him well for any and all future surprise road encounters.

Last weekend, I had finally had it with risking my life and the other kids lives driving with Leta on the loose. And I went to Pep Boys and begged the guys to help me find a way to install a Leta proof strap. They suggested the racing car 5-point harness, but we had already tried that and I knew it wouldn’t work because half the battle is getting Leta strapped in. She hates the confinement and throws a fit complete with body contortions and eye gouging that make it impossible to win the fight unless you are willing every time to climb in the car and completely sit on her. There just had to be a better mouse trap. And so I began calling all the special needs websites. None of them were something I had not already tried until I noticed a gadget at e-Special Needs and the reviews were promising. A cheap piece of plastic, inserted over the buckle release, that blocks little fingers from releasing the strap. The only way to release it is by opening it with a car key. So I ordered it and hoped for the best. When I picked Leta up from Camphill last weekend, she climbed into her car seat, I strapped her down, started the car and watched as she went to push the red release button open. But she couldn’t do it. Her look of defeat, as she realized she had finally met her match, was priceless! And I stared her down and proclaimed, “Admit defeat my little Houdini, I win…. No more getting out of car seats for you.” She laughed. Somehow I think that the joke is on me, but for now, I actually believe that I have won the battle.

My special needs Cyber-hacker

Christmas day arrived and Santa gave Leta her own i-Pad. Santa knew that not only would Leta enjoy watching videos on the i-Pad, but the technology would help Mommy put Leta to sleep at night and perhaps buy Mommy an extra hour of needed REM sleep,from 5am-6am, courtesy of Netflix and You Tube.

And Santa was right! Leta was so absorbed in playing on her i-Pad after Christmas that I was able to read the newspapers, clean the house, write my blog, and peruse the Facebook Newsfeed. BUT that is when I noticed… my FB account had been HACKED! My latest status update, Christmas night, appeared to be a travel article about a Dude Ranch in Wyoming, complete with video. How strange. I also noticed that I had received a few “likes” on my update, one query as to why I felt compelled to post a travel article in the middle of the holidays, and one congratulatory comment that I was on vacation out west.  I quickly deleted all of it.  And then the next day the same thing happened again. But this time a cat video appeared!  I was alerted to “my” posting by my California friend’s comment: “I love the cat video Lainey.. Adorable!” And then before I could get on FB and watch, 3 more cat video comments rolled in…. I deleted everything, embarrassed that these two random postings had occurred. And then I realized….The cyber-hacking was an internal job.    L.E.T.A!

 But how did she manage to hack onto my FB account,twice now? She couldn’t have gotten through on my computer, or my phone…they were both password protected? I went sleuthing. And I quickly found the answer… When Santa gave Leta her own I-pad, the I-pad seamlessly managed to i-Cloud my e-mail, my Facebook, my pictures and my i-Tunes. What planet are we all on that this actually makes sense to anyone now? Leta had it all at her fingertips, even my Amazon account. With just one-click she could order a Nikon camera and have it delivered to our doorstep in under two-days.   So I turned off the FB feature on her I-pad and sent out an apology disclaimer to my FB friends.

I personally hate it when people send out a flurry of random status updates. I like to rely on my friends, certain friends at least, for substance. And here I was my own worst nightmare, getting “likes” for cat videos. And then in response to my apology, I received 16 “likes”, a few understanding comments about my mischevious Leta, and one suggestion that perhaps I should let Leta loose in the kitchen with a Kitchin-Aid Blender and a hot oven. what is that all about?…..at least my friends understand my Leta chaos and are forgiving… My FB street cred was still intact.

But a few more days went by, and the hacker struck again! I received a phone call from an apologetic friend.  The conversation unfolding like this:  “Lainey, I saw your recent post on cyber-bullying and I am so sorry that my son wrote those things on your daughters Instagram wall.”
“You must be mistaken, I replied,  What posting?”  And she said, “The one you posted New Year’s Eve.  I’m pretty sure it was you.” I assured her that I had NOT posted anything New Year’s Eve, not even a cheerful Happy New Year posting.   We were both confused for a moment, and she went on to apologize for her son’s cyber-insensitivity. But then I told her that it was probably my special needs daughter, Leta, who had already hacked my account twice this week. She laughed, I laughed. But did she believe me? What if she thought I was trying to send a veiled passive-aggressive message to her about her son’s cyber-bullying??   I hung up the phone, jumped on my FB account and there it was:  Another article complete with video : ” A Super Simple Set of Steps to Stop Cyber-bullying from happening to your kid.” How did Leta do it this time!!!  I was mortified and quickly hit the delete button. But not before two more friends had “liked” the posting and re-shared it.

I called my friend back to assure her that I really did not post this article and I had no bad feelings…I wanted her to understand the irony. Laugh, laugh, laugh.

But to myself I was thinking. “That 3 foot tall cyber-devil. LETA!!” ……It made no sense that she could get onto Facebook again, now that I had taken it off her I-pad.  

 And then the hacker hit one last time……a political posting, no less:  Lech Walesa decrying that ObamaCare is doomed. Oh God! Now everyone thinks I’m a radical right wing nut-job….This time my friend Geoff, who had been delightfully following all these postings and egging Leta on somehow by liking each of them, brought this one to my attention with the comment, “Now, Leta is getting political on us?” I went to my homepage to delete. But it had been up for an hour…no surprise that no one but Geoff had made a single like or comment. My friends are all Democrats, after all.

dangerous with computers but devilishly cute!

dangerous with computers but devilishly cute!

Even though these instances are embarrassing and hard to explain to the uninitiated in Leta world, I am secretly proud of my daughter’s blooming techno-savvy ways. She can not read or write, but clearly the computer makes sense to her and she is able to navigate it more proficiently than most. And it does makes me continue to wonder, what else can she do? Until my next posting, I wish you a Happy 2014 filled with more love and less chaos, unless of course you would like to have some of mine. xo

Christmas Moseley Style

christmas
Christmas, birthdays and the tooth fairy are my favorite days of the year.  For all three,  I love the idea of creating a clandestine magical moment for my kids; a moment in time when my kids feel their importance in the world utterly and completely; that anything is possible. ” Lasso the moon, Mary…,” absolutely…   As Santa and the tooth fairy’s right hand man, I have basked in the glow of this magic, secretly admiring the midnight lighting on the tree surrounded by Santa’s generosity or the extra flurry of  gold pixie dust that still lingers on my child’s pillow and hair.  At times even, I get so caught up in the magic, that I find my own willing suspension of disbelief take over.   Taking one final look at Santa’s work Christmas Eve,  I pinch myself at the glorious magic in the room.

Unfortunately,  as hard as I’ve tried all these years to master this holiday sleight of hand, one other constant has also been true .  And it did not fit with my pretty illusion.  Leta is so medically fragile and would always catch pneumonia, RSV, or the flu in the midst of my magical performance.  And this reality made the Hallmark holiday moments challenging. Her undiagnosed special needs and her severe pulmonary and respiratory distress were always more acute in the winter months.  Instead of a Laura Ingalls Wilder, “Little House on the Prairie” moment we were always more Charles Dicken’s, “A Christmas Carol.”  Leta our stand in for Tiny Tim with her walker and long oxygen tubes tethered to her nose.  Some years she would be too sick to even come downstairs, or worse she would be trapped on the Pulmonary Unit of Childrens Hospital.

Looking back on all these holidays, I stubbornly never wanted to give up the illusion of the magic.  Down to the happy holiday card; our yearly family PR, that I  sent out for 18 years despite how bad things were.  I have to laugh now because I think I did a hell of a good job hiding the backstory.   One year I put all 4 kids in the window of my Suburban truck, yanked the oxygen off Leta and said, “Quick, SMILE!.”  The only problem was that the camera never lies and Leta was completely bald on the left side of her head.  She had been going through a phase of pulling all her hair out when she got mad or frustrated .   This particular year she had been pulling it out in clumps for days, to the point that I was worried it might never grow back.  Doctors call this behavior in special needs kids, “tick- a- tilla- mania.”   But I found a quick and easy solution.  I asked Jack to hold Leta in such a way so that his left hand would gently cover Leta’s bald spot. Problem solved.  With enough snaps taken, I managed to get one “perfect” picture of my 4 adorable  kids smiling.

Another Christmas card, was even more convincing.  My friend Annie, a professional photographer, took  a photo of our entire family in Maine.  We did the whole family wearing white thing on the beach that year.  We even included our two perfect golden retrievers, one a new puppy  named Maya.   Annie took a gorgeous picture of  us looking like the  “all American family”.  There were just two problems with our public relations stint that year.   Unbenknowst to the kids, I had  already asked Rick for a divorce a month earlier, and Leta had been throwing up violently for 2 days.  She was so dehydrated and sick that moments after our photo-shoot was finished, we rushed Leta to the Barbara Bush Children’s Hopsital where she spent the next week being evaluated  in the Nephrology unit, eventually diagnosed with severe kidney failure.  My kids cherish that last family picture of all us all together, but I knew, even while it was being taken, how completely misrepresentative it was of our life.  Pictures can tell a thousand words, or they can do a good job of hiding the truth.

One winter Leta came down with pneumonia and  was stuck at CHOP for Christmas Day. I hated that she always seemed to  get sick during the holidays, so I came up with a plan.  I desperately wanted one normal Christmas moment with my family.  So while visiting Leta at the hospital,  I told the charge nurse that I was  going to take her for a walk around the hospital to show her  the Christmas lights.  Instead, I walked Leta off the 5th floor Pulmonary unit, through the main lobby of CHOP, past the Christmas lights, down the  elevator  to the parking garage into my car.  I put Leta in her car seat, hopped in the drivers seat,  and made a speedy get-away.  I can not lie that I had a holiday rush of adrenaline as I stole my child from the hospital Christmas Day.  She still had her IV in her arm ,was hooked up to her oxygen, and we just left.  Leta’s giant smile on her face and twinkle in her eye  convinced me that she was in on my devious escape plan, a willing hostage.   She and I have always made a great Thelma and Louise team.  I brought her home that day,  quickly changing her out of her hospital gown and into her striped Hannah Anderson Christmas pajamas, so she would match Jack and baby Lucy for the Christmas pictures. We opened presents,  ate our Christmas lunch and two hours later , were  back at the  hospital.  If anyone had asked, we had just gone for a really long walk. And yes, if Leta could speak she would have told everyone that the Christmas lights were spectacular.

I have to laugh at how hard I tried in my thirties to make things seem perfect when life was so far from it.  And really isn’t the best lesson we can teach kids, just the opposite message?  Life is messy and rarely perfect, but we need to celebrate every moment despite ourselves.

Merry Christmas.

xo

 

 

Genetic Research Update

DSCF3168The long promised roll out of Leta’s Genetic Syndrome by Dr Ian Krantz and his team of researchers at CHOP is taking longer than expected because they are needing to finish up the research and get it published.  But what I know so far is that Leta’s gene mutation on gene AFF4 on Chromosome 5 is proving to be a critical gene in understanding how genes communicate with each other on a cellular level.  It seems Leta’s gene is over-reactive in producing a certain protein and if Krantz’s gene research can better understand how to intervene and turn on and off this activity, they are hoping to find ways of using this manipulated gene transcription to target all kinds of other genetic problems in the entire human genome.

So that is the quasi-scientific update on Leta’s research, but the question I keep being asked is:  How does that effect Leta’s life?   Well it doesn’t.  Leta will not be able to benefit directly from this research.  Her genetic course is set, but she WILL be able to help so many other kids.  If Dr Krantz is right, the research into Leta’s gene AFF4  will  help to understand and correct  all types of genetic mutations that occur in  kids in-utero or later in life .  As a layman I do not even begin to understand the studies they are doing with cohesion, super elongation, and gene transcription.  It is too complex for my English major brain, but I am proud and excited that my little Leta, is making such a big contribution to genetic research.  She was born for a reason.  And I thought that reason was to teach us all about unconditional love, patience, resilience, and human empathy.  But the bonus is that she might end up being part of an important scientific discovery that would not have happened without her.

There are only three beautiful children so far identified with this syndrome.  Leta, Liam and Nadira.   The syndrome is still unnamed but may perhaps be called The CHOP syndrome, an acronym for the manifestations of the kids disabilities.  C- cognitive ; H- heart problems; O- obesity ; P- pulmonary.  I still think it should be called the Leta, Liam and Nadira Syndrome.  That name just rolls off my tongue, but ultimately, we do not get to decide.

 

Camphill’s Special Recipe

 

Camphill Special School is celebrating it’s 50th anniversary this year and they gathered former board members together, myself included, last weekend to reflect on the recipe for success of the school.  Greg Ambrose,  president of Camphill’s Board of Directors, eloquently summed up that “a great dish is better than the sum of it’s ingredients.” And in the same way for a school, “if you bring together the best ingredients, (teachers, special children, nature, music), and stir them with love” then you will be successful.   No matter how hard I try to capture in words why Camphill is  indeed special,  I fall short  because the magic of what happens daily at this school is intangible.  You have to see it with your own eyes and feel the spirit of the place with your heart.  I encourage everyone I know to visit  so that they too can  feel this intangible. For me, it is the quiet rhythms of the day, the peacefulness of the hilltop setting , the kindness of the co-workers, the clarity of love for the children.  It all awakens in me something greater than myself that is hard to articulate.  But each time I go to pick up Leta, I am re-energized.  And I feel so lucky that Leta is part of this amazing community.

I recently wrote an article about the existing system of inclusion in the classroom and why Camphill is special.  It has not been published yet, but I would love some feedback.  (See below:)

 

Does Inclusion really work?

It is time to rethink the existing system of inclusion in the classroom.  There are about 1.5 million children in the United States with some form of special educational disabiity and mainstream schools are failing to meet these children’s needs.   Inclusion is noble in theory, but confused in practice.  It strives to value diversity within our educational community, however, in reality mainstream teachers do not have the resources or training to make it work.

 

On the eve of the 50th anniversary of Camphill Special School in Pennsylvania, I want to assert that as a nation we need to look to Camphill for the example of what actually works to educate severely disabled special needs kids.

 

In a very restrictive environment, Camphill has quietly educated special needs kids to their fullest potential for 50 years and has not only helped them become meaningful members of our larger communities after graduating, this school has educated thousands of families on the true meaning of diversity. In the 1960’s, when Camphill Children’s Village was established in the United States, they were given a large Federal grant by the Kennedy Administration, who believed strongly in the concept of a special needs village. Not an institution, but a specialized and holistic environment that nurtured special kids to their fullest potential.   But sadly, in the decade to follow, a movement came underfoot that took over the nations zeitgeist of what is fair and appropriate for children with special needs.  The drums began beating for the notion of “inclusion” in the mainstream classrooms.  Now that the country had worked through civil rights issues, a fight began, rightly, to give kids with disabilities equal rights as typical kids.  In 1975, The Education for All Handicapped Children Act was passed to ensure that children with disabilities were given the opportunity to receive a public education.  In 1990, 1997, and 2004 reauthorization of the Act took place, and the law came to be know as the Individual with Disabilities Education Act (IDEA).  IDEA mandates that not only should individuals with disabilities be provided a public education, they also should have the right to learn in the least restrictive environment.  This means that students with any kind of disability, both in public and private schools are to be educated in classrooms alongside students without disabilities.  Inclusion was the civil rights issue of the 70’s in education.  A separate education for special needs kids was no longer considered a fair and equal education.  And so special needs kids were mainstreamed and families no longer sent their kids with disabilities away to “special schools.”   Alongside this law, a new silent bias developed in the country. Sending your special needs kids “away” to school seemed morally wrong.  Inclusion, we were told works. It helped all children learn to accept individual differences and to overcome misconceptions about disabilities.

 

But when I began the process of looking for the right school for my daughter with mental retardation in 2003, this mindset did not ring true for me. The argument seemed more grey, than black and white.  I knew that my daughter would not thrive in a regular public school. But I was told that this was my only option.  And after years of speaking to other parents of special needs kids, I realized I am not alone in my thinking. This wholesale approach to inclusion, has left thousands of parents frustrated and confused. Some like myself have been willing to speak up and say that inclusion just doesn’t work.  Our kids are ignored, bullied, and removed from the classroom for disruptive behaviors half the day.  We know from experience that our child requires specialized services and better trained teachers.  But this is not a popular position.  I was willing to fight the status quo and be the squeaky wheel and get my daughter placed in an Approved Special Schools (APS).  But I am the exception because the school districts do not like paying for these expensive APS placements. And if lawmakers were honest with themselves, they would agree that APS’s are often the more appropriate settings for some special needs kids to rise to their fullest potential.  Approved Private Schools offer trained special education teachers that provide one-on-one attention for our kids,  provide special assistive technology equipment in the classroom and provide a structure that can deal appropriatly with the all too often behavioral problems of many cognitively disabled children. As the parent of a 16 year old special needs child, I know first hand that kids with severe disabilities have the best chance of being treated like an individual and learning to their highest potential when they are educated outside a regular classroom.

 

And this is why my daughter goes to Camphill Special School.  They not only treat her differences with respect and dignity, they teach her with songs and games and in ways that she truly learns.  So instead of her being bullied and teased as an outsider in a typical classroom, she is blossoming to her fullest potential.  And she is contributing to the world, we are just not trying so hard to pretend that she will ever be normal.

 

As I see my daughter grow and mature in the Camphill environment, I am grateful that she gets to be one of the 108 students lucky enough to attend this amazing school. But this is the only children’s special needs village like it in this country.  What was once a Federal movement to fund schools like Camphill, has all but disappeared, as our nation continues to buy into the culture of inclusion in the classroom.  It is time to think about where we spend our federal dollars, now earmarked for only one kind of special education.

 

The backlash to inclusion is starting to rise up.  Parents of some special needs kids are desperately looking for alternative educational environments.  Special programs exist but they are expensive and most families can not afford them without some sort of state or federal funding. The Approved Public Schools that are specialized for kids with severe disabilities, like my daughter, can cost from $60K to $100,000 a year.  We were lucky to fight the school district and get them to pay for our her to go to Camphill.  But for every one family lucky enough to opt out of the public school inclusive classrooms, there are 100 more families who know it is not ideal for their child, yet do not have the resources to make a switch.

 

The American Federation of Teachers has urged a moratorium on the national rush toward full inclusion.  Their members have cited concerns that students with disabilities monopolize an inordinate amount of time and resources and in some cases create violent classroom environments.  And The Council for Exceptional Children,(CEC) a large international organization of special educators, parents, and other advocates for the disabled, issued a policy statement on inclusion in 1993. A strong endorsement for a continuum of services to be made available to children with disabilities.

 

In Camphill’s 50th year of service to our children with special needs, it is time to rethink the paradigm of special education.  What The Kennedy Administration in the 60’s knew to be true about this special program, still exists today.  Programs like Camphill, while unknown and under-funded, are actually the one’s helping our special kids learn the most.

 

DSC_7802

All you need is love

All You Need Is Love (Across The Universe) – YouTube

www.youtube.com/watch?v=ZLcC0os5ZR0

The Beatles – All You Need Is Love-HQ – YouTube

www.youtube.com/watch?v=s-pFAFsTFTI

If you did not read this weeks New York Times Sunday Review, titled, “The Value of Suffering” by Pico Iyer, it is an incredible and thoughtful piece.  In summary, he writes that suffering brings clarity, suffering keeps us from taking ourselves seriously, and in some cases suffering is a privilege because “it moves us toward thinking about essential things and shakes us out of shortsighted complacency… a hidden blessing.”

We all suffer, some more than others.  Some have a higher threshold for it, but it is in all our lives, a fact of life.   If you read Laura Hildebrands book “Unbroken” you discover an inspirational  true story of Louie Zamperini–a juvenile delinquent-turned-Olympic runner-turned-Army hero. During a routine search mission over the Pacific, Louie’s plane crashes into the ocean, he is almost eaten alive by sharks,  he survives only to be taken prisoner and spend the next 15 years in a Japanese POW camp. He is brutally tortured and starved.   Few human beings could  endure what he endured, yet he survives, without anger or bitterness.  And he survives with his humanity and dignity intact.

None of our lives will ever be this hard, yet many of us are broken again and again by life’s curve balls.

Last weekend I flew down to Austin, Texas to say good-bye to my college room-mate from UVA who is dying of cancer.  She has suffered enormously these past 5 years, and may not make it to her 50th birthday celebration in two weeks. But there she was radiant and happy to see us without even a hint of bitterness in her body. With grace and humor she spoke to each of us.  She had a message.  “Let go of the detritus of life, the crap, the fights…none of that matters.”  she repeated  her message while we were each at her bedside.  So of course we asked her,  then what does matter?   And Diane’s simple answer?.  “All you need is THE LOVE.”   Focus on the love, she advised, and the suffering goes away. Diane is an unemotional Texan that loved a stiff drink, a good party and a raunchy joke.  To be this sentimental was not like her.  She even kissed me on the lips as I left.

Diane’s message was simple, but it moved my friends and I profoundly.  The love does not pay the mortgage, or make the sick heal, or stop you from having a fight with your husband, or  prevent an accident on your way to work or worse, the love does not stop brutal acts of war.  But it can be a state of mind with which to fight all the daily suffering in our lives and in our world.  Ghandi and Martin Luther King  preached it, but we all still seem to need to be reminded again and again.

And in this context, I realize that my journey with Leta is all about THE LOVE.  She is a walking 3 foot 2 inches , non-verbal ball of love and love is all she wants to share with everyone.   If I allow myself to focus on the other stuff; the medical challenges, the chaos, the things that get broken in my house, the fighting, the sleep deprivation.  And I often do, then I  miss the forest for the trees.  Leta and my friend Diane are my reminders to not take myself too seriously and to remember what is truly essential in this life.  It always comes back to the love.  The love of your friends, your children, your spouse, your parents and even strangers on the street.  We all do better just knowing that it is there.

The 9 Apology Letters I wish I could write

DSCF2172 DSCF2161Dear Amish Family, I am so sorry that my daughter stripped naked on the steps of the Franklin Institute while all your kids were leaving the other day.  It must have been quite shocking to see her toss her wet pull up in your direction, have her throw her pink Krocs at your son’s head as he passed by, and have her flash her naked butt for all your family to see.  I know from your horrified looks that you must think I am a bad parent, but my daughter has special needs.  Since she can not talk, this was her way of staging a formal protest that she didn’t want to leave the museum yet. I am so sorry you were part of the collateral damage, but on the bright side, I bet you had lots to discuss with your kids on your long car ride home.

 

Dear waiters at The Diner, I am so sorry that my daughter flipped over the dinner table at your restaurant, spilling everyone’s dinner and causing your bus boys to spend an extra 20 minutes cleaning the seats and rugs beneath the table after we left. I am equally mortified that on our way out, my daughter grabbed a patron’s plate of hot food and tossed it on the ground. The broken plate and strognaoff-mess all over your floor was really bad. I know it was quite a scene.  I promise you, She isn’t always like this. Her special needs make transitions hard. I am as surprised as you that a little girl only 3 feet tall has that much strength. I know what you are thinking. Impressive, right? I do hope everyone’s tip was satisfactory. Leta really loves your soup. We look forward to returning soon.

 

Dear Pretzel Shop Owner, I am so sorry that my daughter grabbed another patron’s cheese spread and made such a mess of it on your counter. We also offered to dry-clean the woman’s shirt that Leta somehow managed to cover in Nutella chocolate. It was very nice of you to replace her portion without charging us, and I am so sorry for the scene we made as we departed. My daughter has some strong pipes on her. Oh, and if by chance you happen to find one pink Kroc under a table, that would be ours. Namaste.

 

Dear Mary, I am so sorry for the loss of your father last night. And I apologize that when you texted me the news of his passing that I responded with a picture of Leta at the beach followed by happy emoticoms of birthday presents and exclamation points. It wasn’t me. It wasn’t me. I hope you don’t think I am that self-centered. The short explanation is that Leta hickjacked my phone and has apparently figured out how to text pictures and emoticons, which I don’t even know how to do yet.  My thoughts are 100% with you and your family right now, and NOT at the beach. I will call you in a few days to find out how you are doing.  Much love.

 

Dear Neighbors,  I know from the screams in our house that it sounds like I am beating my children at night, but I promise that I have everything under control.  My special needs daughter tends to get a little crazy when her behavioral medication wears off.  She can be quite a handful and make a lot of noise, but I promise that everything is O.K .  No need to call the police.  And thank you to our one neighbor, you know who you are, who happened to see my daughter wandering down the middle of the street yesterday pushing the baby stroller without a baby,directly into traffic.  In the blink of an eye, while I was in the bathroom, she managed to run out of the house, grab her wheels and go. Normally I have the doors locked, but she has figured out now how to unlock them. Thank you for going to her aide until I caught up with her and for pointing out that my fly was open.

 

Dear Photographer at The Camden Aquarium,  Thank you for your patience with my daughter who wanted to spend the entire afternoon sitting in front of your stage set having you take her picture again and again and again. She is quite a ham and loves cameras.  You were incredibly kind and patient with her.  I am so sorry, though, that she held up the line for so long and made such a scene as I tried to drag her out of the picture frame. Have you seen a pink Kroc by chance?

 

Dear woman at CVS, thank you for being so patient with my daughter yesterday while we  waited for medication at the pharmacy.   I am so sorry that she kept walking up to you and poking your nose. I hope she didn’t make things worse.  I think she was really fascinated that you were wearing a band- aide on your nose,so that was her way of letting you know she was sorry for your injury. That is the reason she kept saying “boo-boo” and making a circular motion with her hands on her chest which means, “sorry” in sign-language.  Leta’s special needs and lung disease often limit her physically and verbally but her capacity for empathy is limitless.  I really enjoyed our heartfelt conversation about the lessons we can all learn from children like my daughter. Your kind heart was obvious to Leta, and shined through and that is why she didn’t want to leave your side. I hope we meet again. You are a special person.

 

Dear Friends,  If you received a call from me last week and only heard loud screams or funny babbling noises, please do not be concerned.  I promise I was not drinking.  Leta has a habit of grabbing my phone while I am driving and enjoys calling some of her favorite people. For some reason she wanted to call the Volvo dealership many times, but I also saw that she called many of YOU as well. If your last name begins with an A, this may not be the last time you hear from us, even though I am sure it is the last time I might hear from you. And hopefully you were not one of the one’s we woke up at 6am Sunday morning. I just wanted to have a few minutes more sleep and, wouldn’t you know it,that Leta got hold of my phone…and was calling people for over an hour while I was in deep REM. I am sure you all had fascinating conversations with her. Hope you are having a wonderful summer. Please let me know if you would prefer if I delete your name from my contact list.

 

Dear lifeguard at the pool,  Thank you for understanding that some rules are meant to be broken.  My daughter did not understand that the splash pool was not open until 6p and there was no way for me to dissuade her from sitting in the shallow section.  I hope we were not too disruptive of the other kids swim lessons.  And I promise we will pay closer attention to the schedule next time we come.  I also apologize for going down the kiddie fish slide with my daughter.  I didn’t read the fine print that adults are not allowed, but I did have my 10 year old catch us like the sign said!  I know we were on your last nerve when my special needs daughter joined me in the hot tub.  But the sign does say 12 years old and up and she is 16, just very small for her age.  Rules are rules.  I think we even made you smile by the time we left, no?  Leta has a way of breaking through to even the toughest hearts sometimes.  We will look forward to seeing you next week.

Dear Carrie- Thank you for appreciating the blessings of imperfection. I had to laugh at the site of you when you left my house after our family dinner last night. You had yellow paint in your hair and on your clothes, you had pasta sauce on your forehead, and your hair was sticking straight up. But we had fun didn’t we? Just another typical night with Leta. Thank you for knowing that our life is messy and unpredictable and yet, you still bravely chose to enter the chaos anyway. We love you.

Happy Sweet 16 Leta!

  Prologue to “Sweet Sixteen”

Ever since I was a little girl, I knew I would one day have a baby and name her Leta.  Lovely Leta, Leta Frances, Baby Leta, Leta my love….I dreamed about her my entire life.  The father of Leta was inconsequential.  In my sureness of how the world works, Leta would someday be born and would look like Elizabeth Taylor in National Velvet or Audrey Hepburn in Breakfast at Tiffany’s ….She would be sporty and smart and whimsical….we would go to Paris when she was 16, and I would teach her to drive a Citroen through the Loire Valley.   Most girls spend their time fantasizing about their princess wedding, but I skipped that  part and dreamed about my beautiful baby girl.

If there is a God and if he “works in mysterious ways” to teach us lessons,  I was setting myself up for the ultimate curve ball.  God was gearing up to teach me my first lesson in humility.   And so when Leta Frances Moseley was born, in 1997 at St Vincent’s Hospital in Indianapolis,  she was born with major medical and cognitive disabilities.   People tried to tell me that I would not be going to Paris or Italy or Holland with her …. Instead, I would be spending the  next 20 years in and out of CHOP hospital in Philadelphia and surrounding East coast medical centers.   In retrospect, I look back at my  roller coaster ride with Leta  and can confidently state that … life is what happens when you make other plans.

Happy Sweet Sixteen, my lovely Leta.  You are perfect… just the way you are.

 

 

Why won’t Lucy and Ava stop fighting?

DSCF0617So here we are in beautiful Maine for a week. Jack is still in Philadelphia working at CHOP and Leta is away at camp for the month. We are only three; Lucy, Ava and myself. Time to kick back, sleep late, and have fun. I don’t need to be in “go mode” trying to keep Leta happy, and I don’t have to worry about Leta’s medicine or her potential for getting really sick on vacation. But the reality? We are not having fun. It is not calm or relaxing because Lucy and Ava have NOT stopped fighting since we arrived. All I hear from them is… “Lucy stole my sunglasses,” “that was my seat,” “I found that sea glass first”, “that is my boogie-board,” “I called shot-gun,” “It is my turn on the computer”, “I’m talking to mom now,… No, I’m talking to mom now” as they struggle to get primacy on our beach walk. …the nonsense just goes on and on and on ad nauseum.

“Enough!” I scream for the 100th time, but yelling does not stop them. Then last night, the girls got so wound up over whose turn it was with the Kindle, that they actually ended up in a full blown hair pulling , knee kicking cat fight. It was either time to call Nanny 911 or figure out what I was doing wrong. With Leta away, instead of things being easier, the girls had managed to fill the calm of Leta’s absence with unbelievable chaos. “Why? Why? Why?” I asked myself.

And at 3am with my insomnia in full swing… The “Ah-hah!” answer dawned on me.

When Leta is around, the girl’s needs always take a back seat to her more immediate needs, and so, the trivial minutia of the day becomes irrelevant. There are no fights about clothes, or food and I don’t hear one hundred times that “It isn’t fair that…” or “she stole my shirt” or “she got the better seat,” or my favorite random scream for “MOMMMMMMMM!” the minute I leave the room. I realize that Leta reinforces this good behavior because her immediate medical and physical needs always trump the other kids crying wolf. My kids know this when she is around and don’t even test it. They already know from experience that not only will I ignore their trivial fights, I will give them my “are you serious?” glare and simply respond, “Too bad, life’s not fair” and walk away to return my focus to Leta.

But in Leta’s absence this week, I have parented my girls differently. I have indulged in their silly bickering and instead of parenting them with the glare and the “oh well, life’s not fair” approach, I somehow, unconsciously, coddled, arbritated, bribed and eventually found solutions to their problems of the minute. Only to be discouraged that their silly fights escalated.

When Leta is with us, all our priorities shift. Her medical care and her needs always come first. And in so doing, Leta not only helps me but helps my kids focus on what is really important. The petty small stuff is magically disregarded.

My girls will be returning from a sailing class shortly. Hopefully, after a fun afternoon, they will appreciate how lucky they are to be in beautiful Maine. But if they don’t and they come home with trivial complaints about the cold water, the bugs, or that one didn’t wait for the other to bike home…..then I am now re-armed with my glare and my “oh well” attitude. No more indulging Lucy and Ava. After 16 years raising Leta, I should know better.

A Day at the Beach by Camphill co-worker Shirley Watt

sun, sea, sand, and Leta!

sun, sea, sand, and Leta!

Rehobeth Beach with Garden House

Rehobeth Beach with Garden House

 Leta learning to swim with water wings

Leta learning to swim with water wings

Sun, sea and sand means only one thing – The Beach! And for Leta it means excitement and a lot to do.
Driven by her own determination, she marches around the house gathering essentials in her backpack,
greeting others, a few checks in the kitchen that her lunch is being made… finding her one missing shoe,
then finishing her oatmeal!
The cars are loaded, songs are playing and Leta is smiling and dancing. She is planning on diving in
the sea – and is practicing holding her nose while still on firm ground.
“Bee” (Leta’s word for beach) becomes her mantra
for our car ride, which was anything but rhythmical or harmonious or peaceful. At first Leta was acknowledged and
responded to with smiles from the staff, but after two hours of hearing…:”be”,”be”,”be,” all fellow travelers went from politely saying
“I can’t wait to get to the beach.” to “get me out of this car.”
At the car park there are umbrellas, chairs, toys, coolers, boogie-boards and windbreakers to
carry and Leta is in the middle with hands ready to help. Naturally, she wants to carry multiple things, and thinks nothing of offering her third hand, her mouth.
Finally, when convinced that a little bucket with a shovel is as good as carrying the tent, the cooler or
chairs, we make our way to the beach. Leta carrys her items proudly, using one hand to hold her
bucket and the other to hold on to the person next to her; never mind if that person is juggling 10
chairs too!
Her grip is firm. Her steps are small. The weather is hot, and the word ‘be’ has not subsided in volume or intensity; “beee!”, “beeee!”, “beeeeeeeee!”.
Satisfied that she has arrived, she begins her search to find a good spot – near the water but not too near…she intuitively understands the incoming tides.
Not that it would stop Leta. Come big wave or enormous wave, she continues playing in the
sand. Even when the wave takes her bucket away, she calmly watches with a sorrowful expression,
prompting instant assistance from the public.

Next, Leta begins her diving dance safely on the beach. She holds her nose and makes motions for her brave act to follow. Of course, once in the sea she is
more eager to push, splash and dunk others instead. Enormous waves come upon Leta as payback. And she laughs.

Then Leta is ready to swim. But only if someone is standing on the shore with camera ready to document the moment.
Throughout the time at the beach, Leta makes sure that we don’t forget that she is there. She sits close to us and varies between
pulling large bugs out of our hair to making sure we really
appreciate the feel of LOTS of sand on our skin.
But most of all, we appreciate how entertaining and loveable Leta is. Her excitement is
contagious and her passion for the beach, heart warming. That’s what a beach trip should be after all- Sun, sea, sand and
Leta.

Are you an Optimist or a Pessimist?

A Parable: (source is Anonymous)

A family had twin boys whose only resemblance to each other was their looks. If one felt it was too hot, the other thought it was too cold. If one said the TV was too loud, the other claimed the volume needed to be turned up. Opposite in every way, one was an eternal optimist, the other a doom & gloom pessimist.
Just to see what would happen, on the twins’ birthday their father loaded the pessimist’s room with every imaginable toy and game. The optimist’s room he loaded with horse manure.
That night the father passed by the pessimist’s room and found him sitting amid his new gifts crying bitterly.
“Why are you crying?” the father asked.
“Because my friends will be jealous, I’ll have to read all these instructions before I can do anything with this stuff, I’ll constantly need batteries, and my toys will eventually get broken,” answered the pessimist twin.
Passing the optimist twin’s room, the father found him dancing for joy in the pile of manure. “What are you so happy about?” he asked.
To which his optimist twin replied, “There’s got to be a pony in here somewhere!”
__________

This parable caught my attention because I really believe that 90% of all success or failure in people’s lives is determined by their attitude. People have asked me in this blog, how I manage to cope with Leta. And my answer is that by nature, I am an eternal optimist. That said, I also have made a conscious decision in life, to look for the best in others, not the worst. It is too easy to find fault in people.

What has been wonderful about having Leta in my life, is that because she has no filters and no social boundaries, she continues to put herself out there with all her imperfections and she asks the world to love her anyway. This very act has helped me re-define my notion of whether the glass is half-empty or half-full. For Leta, the glass is always half-full, despite all her limitations. In fact, Leta is the happiest child you will ever meet.

If I saw the glass as half-empty, I would have never made it through the last 16 years. Optimism is a very important survival skill. Without it, I probably would have thrown myself into despair and given up. Instead, every day with Leta, I continue to dig through the horse manure looking for the pony.

Leta is My Teacher: ( posted on Babbles ” Best of Blog” site)

Two years after Leta was born, and many sleepless nights later, we arrived in Philadelphia with a partial diagnosis of Leta’s special needs and we started trying to imagine what it was going to mean to raise a special needs child.  We knew by now that she had Pervasive Developmental Delay, lung disease, was non -verbal and had moderate retardation.  But none of that told us what the journey of loving and caring for our special little girl was going to look like .

One day, she was due to go in for a hospital procedure that required her being put under anesthesia, and we were told that because of her lung disease the procedure could be quite risky.  I was terrified and went in search of a massage to calm my already shot nerves.

I found a place in Chestnut Hill and asked if  they had any last minute cancellations which they did. So I was led back to a room and met my therapist whose name was Beth.  She asked me the typical questions and told me to lie down on the table.  I took a deep breath of relief.  A few minutes later, she walked in and gently  began massaging  two pressure points on either side of my ears.  But then she abruptly stopped.  And she asked me a question:  ” I don’t normally interfere, but someone wants you to know that it is not your fault.”…..and she repeated herself. .” I’m supposed to tell you that it’s not your fault.”  This may seem strange, but I knew immediately what she was talking about and I burst into tears.    I cried like a baby for ten minutes and then thanked her and left.  I didn’t even get a massage that day, but I felt I was  spiritually healed.

For those two years since Leta’s birth, I had held on to tremendous guilt that I had done something wrong during my pregnancy that caused Leta to be sick and not have a healthy chance at life. Maybe I ate bad food, or caught a virus, or drank a glass of wine, early in my pregnancy,that I shouldn’t have.  My guilt was overwhelming…. I carried this child, she was part of me, and I had failed her.   But in this strange encounter, with an American Shaman in Philadelphia, of all places, I was  released from my belief that I had somehow caused Leta’s special needs….

Was this some kind of divine intervention?  Beth explained to me that she had a gift for reading people and she was studying with North American Indian shamans who channel the spirit world .  She explained that she had been forbidden from sharing her visions during this period of study,  but she felt she was channeling something too important not to share it with me.  Was there a greater destiny for Leta that I didn’t understand yet?  I like to think so, because without it, I would not have had the strength to go on and give her the care and love that she deserved.That day, I finally began my journey of  accepting and loving Leta.   I was never going to get an explanation of why my child was given these unfair handicaps.  Leta was clearly going to be my teacher in this life and give me other answers to more important questions.  And even though she has needed me to feed and care for her medically, she  has  nourished my soul for 16 years.Leta can not talk but she offers unconditional love.

Leta can not live without the care of doctors and her daily medicine but she lives within every single person she meets.  She is unforgettable.
Leta is curious and will walk up to anyone that interests her.  The shallow shun from her, the enlightened embrace her.
Leta runs with her heart, her feet sometimes slowly follow.
Leta is willful and tiring but she is also funny and engaging.
Leta is loyal.  She will always be your friend.
Leta is smart, she just has fewer opportunities to show it.
Leta couldn’t walk until she was 3 years old, but she was able to say “I love you mommy”, much earlier.
Leta reminds me  what a real friend looks like.

When Leta turned 8, we discovered Camphill Special School and we were invited into a world that we never thought possible for our little girl.  It was a place that embraced all that Leta offered.  It was not easy sending Leta away to school.  We had so many questions about the quality of her care and if she would be given the love she received at home.  But the truth is, Leta thrives at Camphill because her life is simpler, healthier, less frenetic, more predictable and more attuned to Leta’s needs.

Time marches on at Leta’s pace at Camphill. It is unhurried and manageable. And Leta has fun.  She goes for long walks, enjoys lots of music ,dance and art.  But she also has learned to be a responsible member of a community.  She is given jobs to do, like mucking out the horse stalls or setting the dinner table every night.  Whether it is a big or small job, Leta has  learned to take pride in her work.  At home, she is babied and indulged;  At school, she is forced to find her purpose.  And finally, Leta is loved…no, I mean, she is really loved at Camphill.  And what more could a parent want for their child.  She has found her special place in the world where she is able to create meaning every single day.  I often feel that my other kids would benefit from a life structured more like the life that Leta now has at Camphill.  They love spending time running around the school, visiting the newborn pigs , or just taking long walks with their sister, at her unhurried pace.  There is an energy that surrounds the place, that my other kids really respond to.  We may not talk about it, but it is there.

A few years ago I re-read one of my favorite books by W. Somerset Maughn.  “The Painted Veil”  In it there is one quote, that was lost on me when I read it in my twenties. “Remember that it is nothing to do your duty. That is demanded of you and is no more meritorious than to wash your hands when they are dirty.   The only thing that counts is the love of duty; when love and duty are one, then grace is in you and you will enjoy a happiness which passes all understanding.”In my care of Leta, I have had fleeting moments where I can say I have experienced  grace, but the teachers and co-workers  of Camphill live grace, and breath grace every single day.  They are unfaltering, as far as I can tell.  I am in awe, but grateful that I can know what this looks like even if i haven’t  reached it myself.

As the years go on, and the doctors continue to take care of Leta’s medical needs, I realize that each day that she is still alive, she is not being saved but doing the saving.  Leta is my teacher.  And so is Camphill.

Rosemary’s Story

rosemary and leta playgroupWhen Leta was 2 years old she was invited to join a playgroup in Chestnut Hill. One other little girl, 6 months younger, named Rosemary was also in that playgroup. Since then, our families have grown close and our kids have grown up together. While Leta has not physically grown-up, she has been a part of Rosemary’s entire childhood. Rosemary, now 15, smart, and beautiful has recently developed an interest in working with special needs kids when she gets older. Home from school for the summer, she asked if she could work with Leta as a one-to-one for a few days. I was thrilled to have some help, and Leta was thrilled to have Rosemary’s company. Where once, the contrast in physical size and mental development between Leta and Rosemary was not obvious, now it is inescapable and hard to ignore. Rosemary is a young lady and Leta still looks like she is 4 years old. But I noticed something new about Leta in the time she spent with Rosemary. Despite Leta’s obvious mental and physical retardation, my 15 year old was dying to be treated like a teenager. With Rosemary, she was suddenly conscious of her looks, and kept wanting to brush her hair. With Rosemary, she wanted to show off that she knew how to drive and insisted on taking my car keys and sitting in the drivers seat, and with Rosemary she was just happy to “hang out” like a normal teenager would do with their good friends. Rosemary said two endearing things to me in our week together. “Leta is my oldest friend” and “I don’t even think of Leta as having special needs, she is more like an unruly toddler.” Rosemary did an amazing job helping me take care of Leta. Rosemary possesses the unique qualities of having endless patience, being non-judgmental and having an extraordinary sense of humor about Leta and her unusual antics.

rosemary and leta

Rosemary wrote a short essay about lunchtime with Leta that I asked if I could publish on my blog:

A Meal with Leta Moseley:

Like any job, to eat with Leta you have to have a certain skill set. You have to be a fast eater, ok with mess, very patient, have a good stomach, a good sense of humor, and be ready to fight for the food you want to eat. These are all skills that I had assumed I possessed. That is until I had a meal with Leta.
Anyone who knows Leta knows she loves to eat, and will eat anything. Her favorite food is soup, but for this particular meal we were having wraps.
It started out normally. Lainey called us in for lunch and Leta and I sat down. Right form the start the wrap was opened and then dissected. Any food that Leta did not want was thrown at me. As her sister, Ava, says, “Leta would be amazing at football. She has great aim and an even better arm.” I had the privilege of witnessing this first-hand, when all of Leta’s rejected food landed in my lap. Moving on, Leta decided the wrap needed ketchup; not a big surprise since that is Leta’s favorite condiment. Leta uses ketchup the way most people use salt and pepper. But unlike most, she puts the ketchup in her milk then proceeds to mix it together as if making Nesquick. Through out all this chaos I was able to finish most of my wrap. Unfortunately, when the ketchup-milk was all mixed, she decided that she wanted my wrap too. She quickly grabbed it and when she was done, she gave me back the parts she didn’t want. The meal ended with a splash. Leta, forever the drama queen, decided that it would be a good idea to pour her ketchup-milk experiment all over the table. Making our already extraordinary meal, unforgettable.

Eating with Leta is always entertaining. If you ever get the chance I highly recommend it. Since then, I have had many meals with Leta, each as hectic as the last.
-Rosemary Osborne

0 Days Without Mayhem

image

Leta was home for a week after graduating 8th grade at Camphill. And I was a little out of practice taking care of her 24/7. My response times were slow, my reflexes less alert. Leta requires ninja-like speed to stay one step ahead of her as she dives into the cupboard for soup, or opens the refrigerator at 7am for a shot of ketchup, or throws my contact cases in the shower before I’ve even gotten out of bed. When faced with a tough situation people usually prepare mentally by adopting either the sprint or the marathon response to getting through their hardship. Unfortunately, caring for Leta, is both a sprint and a marathon for as many hours of the day that Leta is awake. Some days, depending on her mood, can be so hard that I just want to burst into tears. When Leta wakes up at 5am each morning, she is in full go-mode. I, in my pre-caffeniated fog, am usually not ready for her bursts of energy. Leta turns the TV on full blast, wanders into the bathroom and turns on the scalding hot shower, strips her clothes off, decides to take her morning BM, but often doesn’t quite make it to the toilet, sometimes breaks a glass in her attempt to drink some water out of the sink, and then tracks with her feet the BM that is on the floor. Now we are only at 5:15am and faced with the daunting challenge of the long day ahead. By 6am, Leta is given her morning dose of ADHD medication, which turns her go-button down a few decibels. But on a scale of 1-10, Leta’s hyperactivity is at still an 8, compared to my other kids being at a 2 or 3.

Jack was up early this week, starting his summer intership at the genetics lab at CHOP. And Leta and I lovingly made him a big breakfast for his first day. We cooked sausage, a ham and onion omelet, and a toasted bagel with cream cheese. We laid it out for Jack on the dining room table, and Leta helped me pour him a large cup of orange juice. Jack sat down, looking dapper in his chinos and white shirt; his CHOP ID strung proudly around his neck. And then I made the mistake of telling Leta that it was time to go. We were headed to the gym. And Leta threw her first fit of the day. In a split-second, she yanked off her shoe and flung it across the room. It hit Jack’s glass of juice, and like dominoes the juice spilled into the plate of eggs, which then ran down the table into Jack’s lap. Breakfast ruined. Jack’s clothes wet and stained. And Jack pissed, storming from the table to go upstairs to change. Leta and I exited for the gym texting Jack an apology on our way. “Sorry sweetie. I hope you have a great first day. Remember that leta’s chaos can be funny with the right mindset. She does have great aim.” And Jack’s response by text: ” Her aim is always TOO good.” This is a truth that Jack and his other sisters have known their entire lives. Things get ruined and destroyed in Leta world. The trick is deciding to laugh and not cry about it.

Our morning routine revs up at around 7am when Leta and I finally hit the gym. Urban Athlete is our spot. I am so appreciative that the owner, Pamela, allows Leta to just hang out among all the gym rats and heavy circuit training equipment. Kettlebells, weights, ropes and balls. Leta has trained on all of them, Leta style of course. (see Leta’s Urban athlete video on this blog) Leta is a fixture at the gym, and I am grateful that everyone that works out when we are there are so forgiving of her antics. Leta likes to drink out of other people’s cups, she likes to talk and mostly gesture to people earnestly while they are doing a difficult plank, sometimes she likes to even sit on someone’s back while they are planking or doing a wall sit. Today she leaned on one kind woman who was sweating it out on the erg and Leta helped her count to 4. Leta also likes to tell people with her hand gestures that they are “done” or that they need a shower. This week my highlight was Bob, another regular at the gym, who coined a phrase for Leta. Leta likes to give people high-fives or hit them with an urban bump. We had been trying to teach her the firecracker bump; you bump and then release your hands in a spray and say “AHHHH!” But Leta could never get this right. She had her own version that Bob coined “The Butterfly Bump” instead. Leta bumps, then gestures her hand back with a wave, and then blows a kiss at the end toward her fellow bumpee. It stuck, and as of this week, is her signature greeting to everyone she meets.

After the gym, we get our Highpoint Coffee. Mine,the triple-shot latte, Leta the everything bagel. She has taken to trying to go behind the counter these days and serve herself. This week we decided to sit down for morning crepes. But after eating one, Leta wanted a second and when I denied her, she not only flipped the table, she threw her knife and fork across the room. Luckilly, no one was hurt. And many came to the rescue, righting the table, picking up the broken dishes and returning one lone Kroc that was flung across the floor as well. In a situation like this, our best strategy is to just exit quickly. The collateral damage is left behind us.

The trick to keeping Leta happy is to keep her busy. So this week by noon, I would take her to an indoor waterpark at the Plymouth Meeting Rec Center. One section is no more than 3 feet deep so it is perfect for Leta to have complete autonomy in the water. She loves to run under the fountains or just lie flat and crawl along the shallow section near the edge. She caught the eye of a few cute little girls and taught them her butterfly bump. And they would keep coming back to show their friends this greeting. I think by the end of the summer, the butterfly bump will have spread nationwide thanks to Leta. Wouldn’t the world be a happy place if it did actually catch on. Anyway, the water park was a lifesaver, not only because we are in the middle of a heat wave but because it wears Leta out and she is exhausted after a few hours of splashing around. One day, while changing out of our wet bathing suits, a large camp group was also leaving. There must have been 30 little girls all about Leta’s size lined up in the ladies room. In a blink of an eye, as I was changing, Leta disappeared and apparently had lined up with the other girls and marched out the door, the counselor in charge, taking a head count and including Leta as one of her own. I thought Leta had run to the shower so I went searching in that direction, but by the time I had figured it out, she was practically out the Rec center door, about to get on the camps big yellow bus. Leta thought my panic was hysterical.

Some afternoons we try to run errands. This time of day is always risky to be out in public with Leta. Her hyperactivity medication has worn off and she is usually tired and hungry. A bad combination for most kids. One day I needed to find a pair of shorts for Ava, so we headed to Target. I was hoping for a quick in and out. We couldn’t find the shorts and Leta wanted soup, so as we wheeled the shopping cart out into the parking lot, Leta threw a monster tantrum. She stripped her clothes off, tossing her wet pull up into the middle of the parking lot, her shoes in another direction, and there she stood butt-naked. Ava was mortified and hid in the car. I quickly grabbed Leta’s things and threw her into the car. I have stopped wondering what people are thinking when they see our public spectacle. I am too busy trying to contain the situation.

Evenings are the hardest with Leta. So my ninja training must kick in at its best by 6p, when I have to cook dinner while Leta is either trying to reprogram my computer, paint the dogs with a green sharpie pen, or worse, help me cook dinner by pulling everything out of the fridge and turning all the burners of the stove on. It is a three-ring circus at this hour.

Eventually, after dinner and a bath, Leta does wind down. And she usually falls asleep by 8 or 8:30p. And I take a deep breath and read for a few minutes on my Kindle. This week I was reading Khaled Hosseini’s latest novel, “And The Mountains Echoed.” And a passage jumped out at me because it resonated with my week:

“They say, find a purpose in your life and live it. But sometimes, it is only after you have lived that you recognize your life had a purpose, and likely one you never had in mind.”

16 years into my journey with Leta, I am recognizing that I am not going to be a successfull television producer, or cure cancer, or perform at Carnegie Hall. Leta is my vocation. Leta is my unexpected purpose. And even on the days I want to just break down and cry, I now accept that I am living the life I am supposed to.

Finding a New Religion

One of Leta’s favorite places to go when she is home from school is our Episcopalian Church, St Martins in-The-Fields in Chestnut Hill. Leta was baptized here in 1999 when she was two years old. From the time we moved to Philadelphia, St Martins became an important place for Leta and our family. We would take all the kids to the 10am children’s service that was cleverly designed to last only 20 minutes; it was less formal, and the sermon and songs were always predictably the same.

“What is the Gospel, kids?”
“Good News”
And what does the Gospel mean?
“That God loves us”

There was never a variance and the congregation of pre-schoolers always knew the right answer. And even though the service was meant for younger kids, Leta continued going until she was about 10 years old. I secretly never wanted her to out-grow it, as that would mean getting up earlier for the 9am hour long service and having to navigate a more adult and perhaps less forgiving crowd. But still today, Leta always looks forward to church. When I tell her we are going, she rushes to my closet to pull out my dress and then insists that I find her a pretty party dress too. Her entrance into the church is always with flourish. She pushes the heavy doors open with gusto, lifts both her arms above her head to heaven, and announces her arrival with a high pitched, “Dahhhhhh.” She presents as if she is The Queen of England, announcing her arrival at court. Some in the congregation, may be thinking, “Oh God, here comes trouble”, but most, I believe, are incredibly accepting of Leta if not a bit amused by a break from convention. And then, with the refracted light from the stained glass windows shining down on Leta, I feel the love of God. And the song that Leta adores begins to play:

“I see….. the light ……of God….. in you,
the love of Christ, come shining through,
and I am blessed to be with you,
Oh Holy child of God……”

At this point, Leta would confidently march down the aisle and find a seat in a pew close to the front, gesturing her hands to her eyes,(seeing the light of God), to her heart, (the love of Christ) and then raising her arms to the heavens again, (the Holy child of God.) I am forever grateful to the community at St Martins for their unwavering patience and 100% unconditional acceptance of my little girl. Without a doubt, Leta is nosier, wigglier and more unruly than any other child in attendance, and yet no one ever lets on that she is disruptive. And we have tested our congregation’s acceptance on numerous occasions. For example; Leta has grabbed the tithing out of the dish, walked up and held hands with the minister as he delievered his sermon, and blown out the candles on the offering table, just because. But my greatest moment of mortification came one day as Leta watched the communal bread be carried down to the front of the church. And instead of waiting patiently for our turn in line for the sacrament, Leta, always hungry, saw a dining opportunity and grabbed the loaf of bread from the silver tray just as it passed our pew. Like a seasoned football linebacker, she tackled the bread to the ground, one arm holding it tight the other hand quickly stuffing large bites of dough into her mouth. Like a pro, she knew instinctively that she only had seconds to succeed. A gluttonous moment to witness for even the most forgiving in the congregation. There was nothing for me to do at this point, but pick Leta up off the ground, pull the bread from her mouth, and stick it back on the tray. My face was red with embarrassment, but no one said a word. The service went on and everyone took communion that day from Leta’s football.

Having Leta in my life has made me question my faith, but also made me a journeyman in understanding not only my faith but other faiths around me. I was baptized in an Episcopalian church, St John’s, directly across from The White House, in Washington, D.C. in 1963. But I never got the sense that my parents were anything more than “Cocktail Christians”. It was always important to them that we get up early to attend church, in our Sunday best, white gloves and all, but I don’t ever remember having meaningful discussions with either of my parents about the actual sermons or the reason we performed this weekly ritual in the first place. Instead, my parent’s focus was always on “The Who’s Who” that attended the 9am service each Sunday. I grew up saying polite hellos to Supreme Court Justices, Congressman and Senators who seemlessly intermingled with my parent’s old guard ,”Inside the Beltway,” social set of self-important doyennes and their husbands. I equated religion with power and influence. And as I grew up I had a pretty cynical take on the ritual of church based religion. Spirituality had never seemed the emphasis.

When we moved to Philadelphia, we joined St Martin’s-in-the-Field in Chestnut Hill. And we baptized all four of our children in this church. But still it seemed like a riutalistic rite of passage for my kids, rather than a conscious spirtual decision. We loved St Martin’s and developed a tremendous sense of community there, but it didn’t satisfy all my spiritual needs. At times it felt very social; it mattered how you dressed your kids and it was a bit of a scene on Easter or Christmas when the holiday congregation showed up. In contrast, we had bought our house in Mt Airy, the next neighborhood over, where we were considered outsiders by being WASPY Episcopalians in a predominately Jewish neighborhood. These neighbors, I am sure, thought we had wrongly taken a left hand-turn by landing so far from our Chestnut Hill milieu. But in fact, this was the exact right place for us to be. And it was the place that my spiritual journey began. Mt Airy thrives on diversity and embraces differences; a refreshing change from Washington D.C. And with Leta in our fold, my family was the definition of different. And even though I was completely ignorant of the Jewish traditions; I asked my neighbors what gelfite was, prounouncing it “Jell-fight” and I wished all my Jewish neighbors a “Merry Christmas” each year, they tolerated my ignorance and embraced my little girl. It was the first time that I was surrounded by friends and neighbors that valued community for the sake of community and not because we were politically important or had influential jobs. I fell in love with Mt Airy and finally felt like I was home. My favorite aspect of the Jewish tradition was what I learned to be called “Mitzvah,” practicing acts of kindness or doing a good deed. I know that this is at the heart of the Christian religion as well, but it resonanted with me by seeing it played out by my Jewish neighbors and seeing them raise their kids with this as the core value system. I was raised with such a skewed value system, money and power, that I loved this tradition and wanted in.

And then we sent three of our kids to Germantown Friends School, which is the oldest Quaker School in America. And I fell in love with this sect of Christianity. The Quakers cut out the middlemen of church and believed in an individuals direct communion with a divine being. And that God exists within each of us. This felt right too. And in my search for divine guidance, I loved the simplicity of the Quaker school and the reflective aspect of Meeting For Worship. Again, no emphasis on money or power.

And then we discovered Camphill Special School for Leta, and I slowly learned about Rudolf Steiner, The Waldorf Movement and the philosophy of Anthroposophy. And I wanted in on that too. I knew there was something special about the people that worked at Camphill, but it has taken me years to understand WHY they are all so special. I have learned that at the heart of Anthroposophy is the emphasis on the development of the human soul and the belief in Reincarnation. At Camphill, the don’t see my daughter as limited by her mental retardation, they see her as a beautiful soul in one phase of her journey to enlightenment. They describe her as a musical instrument who in this life has a few broken strings. I love everything about this value system. Imagination, inspiration, intuition and the goodness of the individual soul are all celebrated in this world.

I’m not sure where I am going with this journey. I am still a Christian and want to raise my kids as such. But I think Leta is much more. If I believe in the teachings of Anthroposophy, Leta is further along in her spiritual journey than the rest of us. She has chosen a harder path in this life. Her vessel, her instrument, is broken. but her soul is strong and intact and sees the light of GOD in everyone. As I have said before, even with all her limitations, Leta is still my guide and teacher.

Cookie Cutters

When Leta was 6 years old and entering Kindergarten, I wanted to find a way to return to work, make some money, and still have the flexibility to be home in the afternoon for my four kids. What I found out was that everyone wants this kind of job, and these jobs don’t really exist unless you are your own boss or can work from home. So, I decided to do just that; start my own business. I did not let the fact that I had never gone to business school, had no background in finances, or ever run a business before deter me from my pursuit.

My “A Ha!” moment came one day while taking Leta to get her haircut. In general, Leta hated these outings. I think she thought of it as an extension of the hospital, where sharp and unpleasant things often poked and prodded her. So I would often cut her hair myself at home. But after a few months of bad haircuts, we would end up back at a salon for a professional do-over. This particular day, we walked into a quiet salon in Chestnut Hill that mostly catered to elderly women. Leta began screaming the minute we arrived. She refused to sit down in the chair and kept trying to run for the door. So the only way to get her to sit, was for me to physically hold her down in my lap, wrapping my legs around her legs, my arms around her arms. A human straight jacket. Even with all this drama, the stylist remained a good sport and was willing to try to cut Leta’s hair. I prayed that she was quick and nimble with her scissors. But Leta was fighting my grip, jerking from side to side, and spitting in the stylist’s face so much that I thought the stylist was going to burst into tears too.

After ten minutes of blood, sweat and tears, the stylist finally called it quits. We were all exhausted and only a few locks of hair lay scattered on the floor at our feet. The other patrons in the salon also seemed exhausted after watching and listening to our theater. I caught their looks of horror out of the corner of my eye. I could hear in my mind the questions I knew they wanted to ask. “What is wrong with that little girl?,” “Why can’t that mom control her?,” “Why is that mom holding her in such a tight grip?,” “Why did they have to come here?” The silent judgement was deafening and far worse than Leta’s tantrums. And to avoid this kind of repeat embarrassment, I adopted the strategy of salon-hopping with Leta; never returning to the same place twice. Kind of like a hit-and-run; we would make a scene and disappear.

And this particular day, after all this effort and still failing at the task of getting her hair trimmed, I had my epiphany. I should start my own kid’s hair salon! Leta would never have to go anywhere else to get her hair cut again. I would be able to hand pick my own stylists that could cater to special needs and autistic children. And I would have the flexibility to work and still be there for my kids. I had seen how successful a kids hair cuttery had been in Indianapolis, where we lived five years prior. That salon, called “Cookie Cutters” let kids sit on motorcycles or old fashioned police cars and watch videos on a television monitor. The kids, so blissed out by the “plug in drug,” would never realize the buzz saw was headed towards their scalps. No tears, no pain, and a balloon at the end. Nothing like this existed in Philadelphia, and it was the perfect combination for me of work and kids. A big departure from my career as a television producer for CBS News in New York City, but it seemed like it might have a potential market, and I jumped head first…

( more in my book)

I took Leta to get her hair cut the other day and was reminded of this time in my life by a strange meeting from my past. I did end up opening and running a kids hair cuttery in Chestnut Hill for 7 years, but I had closed the doors in 2009. And now I was back to cutting Leta’s hair at home. Her hair, so thick and curly, was starting to look like a mullet and really needed a professional shaping. Like when she was little, we dropped by a salon close to home; one we had definitely visited years ago. Jennifer, the stylist, was still there and remembered Leta instantly. For good and bad reasons I have always known that Leta is unforgettable to other people. But even without an appointment, Jennifer eagerly welcomed us in and put all her other appointments on hold to tend to Leta. Ten years older, Leta was able to pull herself up into a chair as Jennifer gently wrapped a cape over her shirt and lovingly introduced the hairbrush and scissors. Leta’s behavior was not perfect, but she did not act the way she used to when she was little. There was no hitting or spitting or crazy flailing in my arms. Jennifer was able to systematically trim Leta’s hair while we reminisced about the last time we had been at her salon. She seemed to have an uncanny memory for my family, even remembering all my kids names. We commiserated that where once the future seemed full of promise, we were both now divorced and leading drastically different lives. But we agreed that we had survived, and the worst was behind us. Jennifer was just like my care specialists at my salon, “Cookie Cutters.” She was so loving and patient with my special needs little girl.

As Leta got up from her chair with her new coif, she tugged at her cape to pull it off, trying to wipe away the bits of hair that had fallen down her shirt. I could tell she was itchy and wanted to take a shower. She asked for some water, which Jennifer gave her. And as I was leaning down to Leta’s feet to put her crocks back on, Leta poured that cup of water right on my head. And she laughed. I guess Leta determined that I needed a shower more than she did. Or in her mind, am I just an extension of herself? Did she pour the water on my head because it was funny or because she was itchy? Maybe both.

We said our good-byes. But this time, I knew we would definitely return. No more haircut hit-and-runs for Leta. She was growing up.

Clouds

Dec 5, 2012 – Uploaded by Woolly Rhino Productions
Check out Zach’s latest song – Fix Me Up – http://www.youtube.com/watch?v= KvSYZHmhIAM&feature=youtu …

Zach Sobiech’s “Clouds” video: http://bit.ly/UIGq9r

This week I watched the inspiring documentary of Zach Sobiech who died last Sunday, May 20th after battling osteosarcoma for 4 years. In his last days he wrote the song, “Clouds,” that I can’t get out of my head. It is a beautiful and uplifting song about remaining positive in the worst of situations. Often, people don’t really appreciate living until they know that they are dying. But Zach’s message, to those he has left behind, is to not wait this long. We all have an opportunity to embrace living life to the fullest each and every day. “Carpe Diem!”

When Leta was young, I was living somewhere in the middle. And I had not fully accepted my life with my special needs child. It wasn’t until God almost took her away from me one day that I fully appreciated how much she truly meant to me. And at that moment, I think I began living, realizing how blessed I was that Leta was in my life.

Laying in my arm was my 8 day old daughter, Lucy, named after my mom, just home from Lankenau Hospital in Philadelphia. She was healthy and beautiful.

I was nursing her on our red couch in the family room. Feeling a post-natal high. I was so in love with this baby. Leta was also home from her pre-school, UCP, United Cerebral Palsy, due to a slight cold that caused her to be low-oxygen and sluggish. She was not quite needing to go to the hospital, but I was on alert as she slept quietly on the floor next to me, her oxygen tank humming close by. Suddenly the phone rang, and startled Leta awake. I could tell that Leta was a bit groggy from some Benadryl I had given her earlier that morning, but at 3 years old, she had also just learned to walk, so was at times a bit wobbly. I smiled as she stumbled towards me, eager to see her new baby sister up close. She called her sister “Ditty” from the moment Lucy came home from the hospital. And as she was calling out for her “Ditty,” making the cradle rocking gesture that meant she wanted to hold her, Leta tripped on her oxygen cord and fell head first onto the hardwood floor. I quickly scooped her up, expecting to see a bump on her forehead but instead discovered a cut lip and blood oozing out of her mouth. It was probably nothing, I thought, but on closer inspection in the bathroom, I realized that she had bit her tongue and was bleeding quite a bit. Even so, It didn’t seem too serious. Leta had already stopped crying. I called her pediatrician anyway and they suggested I bring her in to be evaluated. I packed both girls into my Suburban and we drove out to the pediatrician’s Flourtown office, 15 minutes away. On arrival, we were quickly escorted to a room to wait for the doctor. Lucy began crying, and I was just about to pull her out of her car seat to nurse her when things became surreal. Leta went from sitting quietly in a chair to suddenly and violently throwing up blood. And not just a little blood, she began projectile vomiting blood, Linda Blair style, hitting the opposite walls of our tiny room. I remember thinking that it was truly impossible for this much blood to be coming out of this little girl. I grabbed Leta tightly, irrationaly hoping my hugs would make her stop vomiting and I screamed. I screamed at the top of my lungs for help. The nurse rushed in and seeing the bloody mess immediately called 911. No one quite knew what was going on. Leta was lethargic, collapsing in my arms. The nurse put an oxygen mask on her face and in what seemed like seconds, we were huddled in an ambulance. Just as the doors were about to close, a nurse handed me my almost forgotten carseat and baby. Lucy was crying, clearly wanting to be nursed. There was a smattering of blood across her monogrammed blanket. But all my attention was on Leta. I asked the ambulance driver to take us to Children’s Hospital of Philadelphia; all her specialists were there. But my request was denied. Due to liability issues, the EMT’s were instructed by law to take us to the closest hospital in Abington. The medic assured me that Abington had a great pediatric care unit and Leta would be fine. But at that minute, Leta began throwing up more blood. The medic looked at me alarmed and signaled the driver to turn on the sirens. We had been upgraded to a Code Blue, We arrived at the emergency entrance, covered in blood. But again, Leta had calmed down and did not seem to be in any distress. The medic even took off her oxygen mask and wheeled us to a room.

The doctor arrived, examined Leta and asked me questions about my son. “Excuse me?” I asked, annoyed that she was so obtuse. Leta had short hair like a boy, but was wearing a pink shirt and pink sneakers. “Actually, She’s a girl, her name is Leta and she has special needs and lung disease.” I explained the fall, the cut tongue, the massive amounts of blood. The doctor nodded her head and left as quickly as she had arrived. And we waited. Leta got down from my lap and began stumbling around the room, asking for water. A nurse grabbed us a dixie cup, Leta drank it all and asked for more with her sign language hand gesture. I filled the cup up a few more times and we waited. Things had calmed down, leta seemed fine and I began to reason that all that blood from her tongue was just blood she had swallowed not understanding how to spit it out. I was getting ready to explain this all to the doctor when she returned, but the doctor spoke first. She stated that she was going to need to examine my son’s mouth. Again with the gender confusion? I corrected her and agreed that my DAUGHTER could be examined. I held Leta in a tight grip, knowing she would not like someone poking a tongue depressor around her mouth. And I was right. Leta wanted nothing to do with this. She became agitated and refused to cooperate. She flailed her legs, she spit at the doctor and even tried to bite the doctor’s fingers. The doctor was frustrated and left without a word. In fact, this time she was gone so long, that I had time to call my husband and ask him to come meet us, hoping that we could all go home within the hour. Rick arrived 40 minutes later. And then there was poor baby Lucy who had somehow managed to fall back asleep through all the excitement, but was now awake and screaming for my attention. She needed to be fed. She and my aching boobs were telling me so.

Finally, the doctor came back in and advised that Leta needed to be put under local anesthesia in order to get a better look at the laceration and possibly stitch it up. We were surprised by this decision. And we asked a lot of questions, primarily if this was really necessary given that Leta had lung disease and was sensitive to anesthesia. After all, It was only a tongue bite. In the past, when Leta had undergone any kind of surgery, she had needed supplemental oxygen and very close monitoring. The doctor assured us that this was just a very light dosage of anasethia, and Leta would be monitored with a pulse ox the entire time. We nodded our heads, like bobble-dolls, and agreed with the good doctor. As she continued to explain that a worse outcome would be to take Leta home and have her tongue bleed more all night, possible aspirating the blood in her sleep. I did not want this scenario to happen. I had seen enough blood for one day, so I consented. After all, the doctor knows best.

A nurse arrived with a large bolus of Brevitol and pushed it up Leta’s rear-end. I sat sat on the table holding my little girl, and she dozed off within seconds. But I quickly also noticed that her oxygen saturations began to drop. 95, to 82, to 70, to 60, to 52. I looked at my husband with alarm, unable to even get any words out, I knew something was desperately wrong. I looked for the doctor but we were alone in the room. Rick instinctively left the room and screamed for a nurse to get oxygen. It was strange how they had given her the anasthesia and then all left. We were alone and our daughter was crashing. I was losing my little girl right before my eyes. A nurse ran in to put oxygen on leta, then realized there wasn’t even a canula hooked up and she had to leave the room again in search of one. And then Leta became limp. She was unconscious and started trying to throw up more blood. But she swallowed it into her lungs and was drowning in her own blood. Leta stopped moving all together, and no one was helping. I was not sure if she was even breathing and I freaked, “She is fucking dying…do something ,God damn it.” My hands became weak. I felt numb and someone pulled Leta from me just in time, as I fell off the table and onto the floor. I could hear Rick screaming at a nurse, “We warned you guys, we warned you guys…” He said this over and over again. And then hands lifted me off the floor, escorting me out of the room. Above the hands, I noticed a clergy’s collar, and he asked me if I wanted to pray.

I was sobbing but dutifully did as he asked and began praying out loud, “Dear God, Dear God…do not let my little girl die. I love my little Leta and I promise I will always love her and take care of her if you let her live. Please God, let her live!” The priest picked me up off the floor, again, to take me to another room. I guess I was making quite a scene in the ER. And as I looked across to Leta’s room, I saw my husband huddled over her bed with 3 or 4 other doctors and nurses trying to get her on life support. Our eyes locked and I knew by his expression that, at that moment, she was still alive. But barely. None of the equipment had been at hand in the room for this sort of emergency. They had wheeled in a crash cart with tubes that were not even properly connected for an emergency intubation. Leta was close to death and I blacked out…

(more in my book)

Finding A New Normal

Our first winter in Philadelphia was tough on Leta. She was really sick all the time, and we had to rush her to Children’s Hospital multiple times for pneumonias, RSVs, or the flu. Even the common cold seemed to hit her hard, and she would de-saturate drastically. What should have been normal oxygen levels of 98-100 would go down into the 60’s, sometimes lower. Leta would turn blue and not even her oxygen would help her stabilize. Sometimes, she would end up with a collapsed lung. Our life became an endless round of 911 calls or insanely late hour drives to the CHOP emergency room. CHOP would become our home away from home for weeks at a time. After 8 hours getting through the emergency department, Leta would be checked into the pulmonary floor. Ten years ago, before the new patient room wings were built, rooms were scarce, and nurses were scarcer. It was impossible to get a “single” room, so you always had roomates and no privacy. I would share rooms with other moms who all had a unique look in their eyes. They had the face of someone sleep deprived but with a sadness in their eyes that could only be caused by a traumatic experience; Not unlike PTSD syndrome that war veterans get. I didn’t realize that I had this look too. I was not familiar with hospitals, having never been very sick in my life. My only experiences had been in labor and delivery rooms. So the sounds and smells and urgency was all foreign to me. The constant beeping of monitors and alarms going off made me feel like I was in a combat zone.

And this war I seemed to be fighting, was chronic and unrelenting. A lot of moms on the pulmonary floor had kids with cystic-fibrosis; a disease passed down through families that causes thick, sticky mucus to build up in the lungs and digestive tracts. It is one of the most common lung diseases in children and young adults and it is life-threatening. Even though Leta did not have CF, these moms and I shared an unspoken bond. We know it just by looking into each other’s drained eyes. We bypassed the formalities of polite chit-chat. Within moments of meeting each other, recognizing our common battle, our conversations and friendships ran deep very quickly.

Leta’s lung disease was an anomaly to the pulmonary doctors at CHOP. She was undiagnosed and no genetic condition seemed to fit her pulmonary issues or physical traits. The doctors all scratched their heads as to why her lungs were so damaged. But with each visit to CHOP, I grew to be more and more familiar with the sounds of a hospital. The constant beeping sounds of IV machines dispensing fluids and the alarms of the oxygen and heart monitors, and the occasional CODE BlUE alerts that would cause all the nurses on the floor to triage quickly down the hall. There seemed to be a rule, intuitively understood by parents, that you should never ask what just happened during a Code Blue. Instead, I would lie in bed with Leta, relieved to know that in the continum of care she was faring better at this moment than some other poor child down the hall. There were always kids far sicker than Leta. Some never leaving the hospital again. One minute I would feel sorry for myself and angry at god that my little girl had to suffer, and then a moment later I would be eternally grateful that she was still here. Besides learning the internal CHOP emergency codes: Code Red, fire; Code Amber, child abduction, Code Brown, weather emergency, CHOP was teaching me how to have perspective. Eventually, I would even have moments of great comfort being in the hospital. It was the one place that being with Leta felt normal. I could relax my guard as the vigilante caretaker, knowing Leta was safe.

But at home things began to fall apart. I began to get weepy at night and cry for hours. I would lash out at the injustice that I had a special needs child. And I would even scream to my husband that I didn’t WANT to have a special needs child. As if I could give her back at this point and have a re-do. At home I indulged myself in my pity party. It wasn’t fair, why me??

People with the best of intentions would tell me that “God doesn’t give you anything more than you can handle.” And “how special I must be that God trusted me with his special angel.” These sort of statements just pissed me off and didn’t make me feel any better. I felt justified in my anger. And worse I was resentful of all the other moms out there who seemed so effortlessly to be birthing healthy kids.

I spent a good two or three years being angry. Angry at everything. I was toxic. And besides Leta being medically fragile, she was a complete handful. We called her a whirling dervish, the Tasmanian devil, a small brown bear at times. Leta had extreme ADHD (Attention defecit hyperactivity disorder) and was unable to focus on any one task for more than 5 seconds. This left us chasing her around the house from one mess to the next all day. She had an endless curiosity and could pull things out of drawers, shelves, food cabinets, refrigerators, faster than the speed of sound. Eventually we got smarter and smarter about leta- proofing our world with safety latches, but this didn’t always stop her and she seemed to just get more creative in her ways of destruction. So coupled with my anger, I was exhausted, sleep deprived, which just made me… well, angrier. And this feeling wasn’t mine alone. My husband showed his anger passive-aggressively or in outbursts of OCD. He would go ballistic over dirty clothes in the hamper, or messy closets , or his favorite was screaming at me for “my drawers of shame.” Leta’s sickness was something none of us could fix, so he would try to control the chaos of our life by cleaning or pointing out the little things that I had done wrong that day. I was too exhausted most days to worry about the messy closets and dirty dishes. I resented that that my life had fallen so far from normal. And poor Jack. He was only 4 years old but angry too. He was a beautiful child, out-going, kind hearted and smart, but he would have horrible outbursts. One day while I taking a rare nap, Jack startled me awake, holding his guinea pig 2 inches from my face.

He said, “mom, mom… something is wrong with my guinea pig, he is not breathing.”
I looked and sure enough, the guinea pig he was holding right in front of my eyes was dead.
“How did this happen sweetie?” I tried to ask calmly
“I don’t know,” he said “He wasn’t listening to me and doing what I wanted him to do, and I got mad.”
My heart raced to images of Lenny from “Mice and Men” or worse. Was this an early sign of my four year old child’s murderous pathology? I knew it was time to get help!

Jack was seen by our friend and therapist. Her diagnosis? Jack is angry. He is not getting the attention that he needs and is not being taught the skills to cope with Leta’s chronic illnesses and condition. She suggested we teach Jack the language of special needs. We helped Jack memorize this sentence. “My sister has pervasive developmental delay of unknown etiology and lung disease.” At first it seemed like a foreign language, too sophisticated for a small child to remember, but Jack learned it in a day. When other kids asked him what was wrong with his sister, he no longer had to shrug his shoulders and feel embarrassed, he had answers. Jack was immediately empowered by these words and seemed happier. And to my great relief, there were no more mysterious rodent deaths in our house.

We knew we all needed to find a way to make the anger go away. I decided that my way was to try to have another baby. And when I finally did get pregnant again, my anger lifted. My family was not going to be defined by Leta’s chronic sickness and special needs. We were going to find joy again and find our new normal.

A Mother’s Day Garden

Leta was home from school this weekend. And Saturday night, it was just the two of us alone. My two other girls had sleepovers and birthday parties to go to, so we began our evening ritual of bath and bed with few distractions. People ask how I cope some days with Leta, and I just say that I buy really good red wine. So with my cabernet glass in hand, I turned on the bath and began singing Leta’s favorite bath time song, “Rubber Ducky.” which is only sung well, which is to say, if it is only sung poorly and really out of key. The higher pitched my voice, the more Leta laughs. “Rubber Ducky, you’re the one, you make bath time so much fun…Rubber Ducky I am awfully fond of you…Rubber Duck, Rubber Duck.” Everyone knows it. Leta loves it.

And it was then that I found an envelope on the sink inscribed, MOM. I opened it with excitement. Lucy and Ava had left hurriedly for their parties, but had somehow sneaked back upstairs and left me this beautiful mother’s day card. Just when I was feeling invisible, another night of thankless mom duty with Leta, I was given this gift.

“Our hearts are only as beautiful as the love we put in them,
And your heart MOM, is one of the most beautiful there is.” Love Lucy & Ava

A small gesture that meant everything to me at that moment.

The next day, Leta was up at her usual hour of 6am. We usually try to kill time until Highpoint Cafe opens at 7am. We are always the first one’s there, cheating the arrival time by 10-15 minutes. But it is the best coffee in Philadelphia, has the nicest baristas in any town, and they love Leta. We get the usual, me a triple latte, Leta the everything bagel with butter. Sometimes we sit and other times we take it to go. But this morning, Leta veered from either routine. She got up from her seat and stood at the counter, hands on her hips, and made her sign for coffee. She shakes her head from side to side really fast and makes the noise, “ Errrrrh”…..It’s hysterical. I can only assume, she learned this as the sign for coffee by watching me wake up in the morning and make this very same expression. She knows that until I get my Highpoint Coffee that this is what I look and sound like. (a grumpy pirate) So there she stood. My warm and wonderful namesake barista, Layney, asked me if I wanted another cup, and I responded “No”, but Leta would not take no for an answer. Hands on hips, she was not budging…..”Errhhh” she intoned again. So Layney, handed Leta a small cup of hot coffee. Leta was delighted and with both hands she carefully walked it over to our table and handed it to me. And then she gave me a big Leta bear hug and sloppy wet Leta kiss. She may not have actually said “Happy Mother’s Day,” but her intent was clear.

The rest of the day, we spent weeding in our yard , making a trip to the flower store for some perennials to brighten up the new house, and then we planted. Ava and Lucy planted their own vegetable gardens, Lucy wanting to include tomatoes, peppers and a cotton plant. Ava picked out lettuce and one tiny watermelon plant, and Leta chose one small geranium. We also bought some hostas, a red azalea bush, some purple salvia, and a few ferns.

In reflection ,gardening with my girls yesterday was a perfect metaphor for being a mother. Symbolic of the nurturing I try to give them. As I try to plant the seeds of kindness, love, and hope, as I gently water my plants each and every day with small gestures; cutting the crust off their lunch sandwich, listening to their latest problem at school or singing them their special tuck in song each night, and then very patiently standing back, with trepidation and pride, to watch them grow into themselves. Leta always growing a bit slower, but still growing every day. It was a perfect Mother’s Day.

Jack’s College Essay

 

When Jack was 6 and Leta 4, Jack clearly loved his sister, but he was still struggling with the fact that she was so sick, so often and required so much medical care.  He hated the long periods of time that I was away with Leta at the hospital, he hated the sound of the oxygen machine whirring all night.  He said it kept him from sleeping and was a scary sound outside his door.  And he hated watching us have to wrestle Leta to the ground nightly in an attempt to attach her oxygen to her nose.  Leta refused to keep her nasal canula on, but without it she would turn blue, so our only alternative, short of  having her on a tracheal ventilator, was to strap her arms down with “No-No’s,” a euphemism as far as she was concerned, for straight jacket.  The “No-No’s” prevented Leta from bending her arms and therefore, she was unable to pull out the oxygen tubes from her nose.   We hated putting Leta through this misery, but the end justified the means.  Without “No-No’s” Leta would not get enough oxygen to breathe.

One evening, while I was holding Leta down on the floor and unwinding the surgical tape to wrap her in the “NO-NO’s”,  Jack walked by and insensitively asked: “Why does she have to scream so much every time you put that on her?” ” Why is she such a cry baby about it? It’s just oxygen.”  And for some reason, in a moment of sleep deprivation, grief and bad parenting, I did the unthinkable.

I grabbed my son, held him down and strapped both the “No-No’s” on his arms and placed the nasual canula in his nose, turning up the O2 strong enough to let him feel the rush of air through his nostrils.  He flailed, he wailed, just like Leta.  As I write this, I am horrified that in  some strange quest to teach him empathy and compassion, I  put Jack through this.  We never talked about it again.  Occasionally, I would wonder what his therapy bills might look like down the road, but I buried the memory in our collective past.

And then it came up again, last year;  Ten years later, as I sat with Jack at a college essay writing seminar at The University of Virginia, my alma mater.  The professor was emphasizing to the kids that college essays need to be about a defining moment in your life that exemplifies who you are as a person and the writer needs to convey his own voice through the story.  Jack seemed interested, put his head down and began writing.  I read over his shoulder:

“ The oxygen was pulsating through my nose,  my mom had strapped me down, I couldn’t believe what was happening to me, but I knew at that moment how much I  loved my baby sister Leta.”

Jack turned to me and asked, “Do you think this is what he has in mind?”

I was so choked up, all I could manage to say was that you should go ask the teacher……..

Jack’s memory of that moment was not anger but pride that he had been able to experience Leta’s struggle.   And it seemed that in his memory, at age 6, he had a cathartic realization about how important Leta was to him.   What a relief for me that I wasn’t going to be painted as “Mommy Dearest” in all his college essays.  But more importantly, what a relief that my “tough love” worked.  Jack is a deeply caring and empathetic young man because of Leta.  All of my kids are.

They are wonderful, resilient and fun loving, with an endless capacity for empathy for their sister and  for the world around them.  I  do not take any credit for that part of them.  They learned it all from Leta.

My Cover Girl

leta cover girl

file://localhost/Users/lainey/Desktop/leta%20cover%20girl.tiff

In 2012 Leta was the cover story for her school’s winter magazine, “Reflections.”  The magazine was sent out to over 50,000 friends of Camphill Special School, and it was so exciting to hear from people that our little Cover Girl had arrived in their daily mail.  I was reminded of this moment when I picked up People magazine last week and saw that  Talia Casteliano, a terminal childhood cancer patient, had been named an honorary cover girl by CoverGirl Makeup.  Talia has been battling cancer since she was 7 years old.   This little girl is absolutely beautiful!  How refreshing that we get a break from the impossible images of beauty, that none of us can attain, and we are allowed to focus for a minute on what real beauty looks like.   We all know that “beauty is only skin deep,” but magazines continue to instill in us that we should attempt to conform to impossible images.  When Leta’s face appeared on the cover of her school magazine last year, I saw nothing but perfection.   I am sure Talia’s friends and family agree.  Hopefully, in our kids generation, we will see more Letas and Talias on the covers of our beauty magazines….

 

 

Mr Rogers Mom had it right

When We See the Helpers–We Know There’s Hope (click here for video)

http://www.youtube.com/watch?v=-LGHtc_D328

In the wake of the Boston Marathon tragedy, Mr Rogers tells a story about the wisdom his mother shared with him when he was growing up.  Her advice was: ” when you are in the midst of something scary or tragic, always look for the helpers….  Because when you find the helpers, you will know there is hope.”  I love this sentiment because it reminds me of how I managed to take care of Leta for the last 16 years.  Her dad and I showed up every day, but it was the endless army of helpers that always showed up just when Leta was at her sickest or needed extra love and support.  Leta has brought some amazing people into our life that we would never have known if it were not for her.  So thank you to Mylene, Ericka, Gail, Becky, Linda, Lynette, Jeanine, Rosie, Nora, Narkie, Kim, Guy, Annie, Bernie, Ashley, Nikki, Kenny, Veronica, Sarah, Darlene,  and so many others that have made a difference in Leta’s life so far…….You are all helpers, healers and heroes to us.

Leta’s love affair with Spongebob

 

I have no idea why Leta has always loved Spongebob.  But she does and one of her earliest words was asking to watch her show, “Ba-Ba.”   And because Leta only has a verbal vocabulary of  about 50 words,  I have tried to pay close attention to the words that she does care about.  Leta can say “more”, “help”, “done” and “home” for example,  but she can only verbalize four words that represent activities that she likes.  And these are “ball”, (she loves to go with her dad to coach her sister’s soccer games),  “eat”…( leta’s all time favorite pastime 24 hours a day), and “Ba-Ba.”   Every weekend that she is home from school, she asks to do all three.  We obviously do not deprive her of  eating, soccer is a constant in our lives too , and then there is  “Ba-Ba.”   She knows how to turn on the TV and press channel 33, and like magic, she finds Spongebob on Nickolodeon.  So I had to ask myself, what is it about “Ba-Ba’ that captures the attention of my special needs child?  Leta has extreme ADHD.  Her attention span is 5 seconds long for almost all activities; art, computers, music, books.  She flits from one thing to the next and is in constant search of new stimuli.  Some days keeping up with Leta is the equivalent of running a marathon.   And last weekend was no different.  If she wasn’t opening the fridge for the 20th time, grabbing handfuls of last night’s spaghetti and meatball dinner, she was dumping 1000 piece jigsaw puzzle pieces on the floor then moving on to re-program my computer or paint the dog with a pink Sharpie marker.   Freud would say that Leta is all “ID:,  She has no impulse control.   But Spongebob captures and holds her attention, sometimes for 30 minutes straight.  This is sometimes the only opportunity I have for deep REM sleep , a shower, or a quick moment to fold laundry.  Most parents remember these days  from when their kids were toddlers, but Leta, 16 years old, is still in constant motion.    So Spongebob has been my savior.  Some days I send prayers of thanks to Stephen Hillenburg, the creator.   But he should also be thanking me, because we have spent the last 16 years of Leta’s life buying endless Spongebob merchandise.   We have been throwing Leta a Spongebob birthday party since she was 6 years old.   We buy party hats, plates, cups, party favors, noise makers and the all important Spongebob Pinata.  None of my other kids like to admit that this is their favorite , most rocking birthday party of the year.    The rest of the year, we are helping Hillenburg pay for his retirement home with purchases of  Spongebob pillows, cameras, laptops, bed sheets and musical instruments.

But back to my original query.  Why is Leta so fascinated with SB?

I decided to gather a focus group to find answers.  Actually, I just randomly asked my kids and a few close friends for their thoughts.   But their responses were deep and insightful.  Leta likes him because……..

Spongebob is kind

Spongebob gets into everything

Spongebob is crazy and loud

Spongebob is an eternal child

Spongebob sees only the good in people

Spongebob doesn’t have to be cool

Spongebob loves everyone around him.

Spongebob has no boundaries

And  then I realized……… That’s it!   Leta sees herself in Spongebob.  Leta is all those things, except the annoying voice.   Leta is an eternal child and has a heart of gold, just like her friend under the sea.  And to add my own deep interpretation.  Spongebob and Leta both live  in the moment.

As Spongebob likes to sing, “Everyday is the best day ever…”   Leta doesn’t think about yesterday or worry about tomorrow.  She always just enjoys today.

Maybe we should all be watching more “Spongebob Squarepants”.

 

 

A Different Sort of I.E.P.

Leta’s annual IEP is coming up next month.  And as I do every year, I quickly review the listed goals and objectives.  Honestly, they haven’t changed much since she was in Kindergarten.  Leta is still working on identifying the days of the week, counting pennies up to 5, staying on task at a puzzle for up to 5 minutes, and responding in two word utterances to a picture.  And each year the teachers comment  that Leta has made “very limited progress achieving these goals.”   These IEP’s used to upset me as they are the only measurable way we have to record her progress, and Leta has made few gains in 8 years. But it is no fault of the school.  Leta has mental retardation and may never have success.   But Leta is achieving far greater goals that can’t be measured on an IEP.

We live in such a data driven world, where all kids are scored:  PSAT’s. SAT’s, ACT etc…..  But what we have forgotten to track in the world of testing is a child’s emotional growth.  Leta may never hit the ball out of the park counting to 10, but she continues to hit a home run in a different sort of way.

Emotionally, Leta has grown tremendously since she started at Camphill.  Because at Camphill they do more than work on IEP goals.  They educate Leta by nourishing her soul.  Any given day that you walk into a classroom, you will find kids painting, dancing, playing the flute and lyres, acting in plays, studying art history, or going out for long walks in the woods.  Camphill’s Waldorf based education seems to awaken the spirit in each of the special kids that go to school there.  No IEP will ever be able to measure the data on this objective.

When Leta was 7 years old, she had to do a standardized test in order for her to be placed in a special needs kindergarten in the Philadelphia public school system.  The test was designed for non-verbal kids.  The answers were drawings that required no reading.  All Leta had to do was point to a drawing  that best matched the answer to a verbal question.  One question went like this:

“ Leta point to the wet dog”  and the answers were:

  1. a dog in a dog house
  2. a dog eating food
  3. a dog in a rainstorm
  4. a dog going for a walk

Obviously, the correct answer was 3) a dog in a rainstorm.

Leta looked at all 4 answers and did not respond, so the tester asked the question again.  This time Leta pointed to her mouth indicating that she was thirsty.  The tester asked Leta if she would like a glass of water and Leta said, “Yahhhhh”.  We got her the dixie cup and the very serious early intervention tester asked the question to Leta for a third time.  “Leta, point to the dog that is wet.”

Leta paused, drank from her cup of water, and instead of swallowing, she spit on the page and pointed to the dog eating food . (2 )was her answer.

This dog was now indeed very wet.  And to make matters worse leta began laughing hysterically.  And so did I.

I asked with a smirk, “Does that count as correct?” I was such a proud parent .  But the tester replied ,”NO!”  Leta and I gave each other a high-five anyway.  In my opinion she aced it.

Two weeks later, according to a City of Philadelphia letter, Leta had flunked the test and was given the official label of Mental Retardation.  She got  no credit for creativity or sense of humor.

But luckily for Leta, Camphill appreciates her kind of smarts and they get her kooky sense of humor. And each day they continue to nourish her soul.   It is just too bad that it will never be reflected on her annual IEP.

My Tiger Shark

Leta’s younger sister Ava  decided to write a poem tonight.  I am touched by how funny yet profound a 9 year old can be in her reflection of what it is like growing up with a special needs sister.

 My Tiger Shark  by Ava (9 years old)

Leta you are lovely and make me laugh,

but you have good aim with glass.

We have had our ups and down.

I love the good times but, when it’s the other way around

I hate to have made you frown.

One of our good times is when we are at the park,

And I’m with you listening to the dogs bark.

One of our not so well times is when someone makes you mad

Then you start acting like a Tiger Shark.

But I will always still love you

And I will never change my point of view.

You love everyone,

And you are my homerun.

I hope you love me, because if you do….

I love you too.

 

 

Shopping Therapy

 

One of Leta’s favorite past times has always been food shopping.  It combines her love of pushing a shopping cart around the store and her love of eating.  I have often given her free reign to push the cart down every aisle, load up on all her favorite snacks, chips, soup, frozen pizzas, chef boy ar dee, ravioli, apple sauce, ketchup and lots of pasta sauce.  This sport has helped us pass many a long weekend when I was at a loss for how to keep Leta otherwise occupied.  The trick was to have her enjoy the shopping but not really have to buy any of it.  If any Acme managers in Philadelphia are reading this book,  this is my confessional that I am the one who left all those obnoxious shopping carts filled to the brim with red food products and chips on rainy Saturday afternoons.  I am so sorry.    The girl likes to shop, what was I to do?  And with her Ninja speed she was able to fly down the aisles grabbing things as if she were on a gameshow, timed to see how much she could load up on in 5 minutes.  Occasionally, we would change the rainy day venue to something more exciting like Target!  And it was one rainy day in Maine when I took Leta to Target that I got distracted in the athletic bra section.  When I turned around, Leta and the shopping cart were  GONE.  Thinking that she couldn’t have gotten too far away, I casually walked to the next few aisles to catch up with her.  But Leta was no where in sight.  I quickened my pace to a slow run to cover more ground but still no Leta.  Now I was in a bit of a panic and started running between aisles.  Surely, I would hear her or see her at this pace.  But Leta was  really gone.  5 minutes had now gone by, so I ran to the front of the store and told one of the check- out clerks that I was missing my 12 year old daughter.  I described what Leta was wearing and they put out a broadcast, “Would Leta Moseley please come to the mangers office at the front of the store.”   When I heard this, I realized I hadn’t explained the situation clearly at all.   They were assuming she was a typical 12 year old who had wandered off.  “No! “ I screamed.  “My daughter has special needs.  She is non-verbal and won’t understand that.  She is only “this high”   I gestured, showing a child of about 3 1/2  feet .  “But she is pushing a shopping cart around somewhere in your store, …alone.”   Now, they seemed to understand.  And the next thing I knew, an alarm went off and Target went into lockdown.  All entrance and exit doors were locked shut and the Target staff and I began searching for Leta.  5 more minutes went by and still they had not found her and I  became frantic.  I couldn’t imagine someone actually kidnapping Leta but the thought began to cross my mind, or worse what if she had already walked out of the building?  What if this was one of those moments that my life as I know it stops and Leta just disappears for good?

It also occurred to me that the security team at Target probably had no idea what sort of child they were looking for.  Leta pushing a shopping cart around could look quite competent and not appear to be in any distress at all.  If I wasn’t able to find her, how could they?

Ten more minutes passed, and I had systematically walked every aisle in the store.   And at last, I heard over the radio that she had been found.  I waited  and sure enough, through the aisles, Leta appeared with a security guard in red.  Leta was still pushing her shopping cart, now overloaded with everything imaginable and more.  There was food, there were piles of clothes.  There were diapers and toys.  And Leta, of course, no worse for the wear,  had the biggest grin on her face.  As far as she was concerned, this had been a very successful day of shopping therapy!

Leta is my teacher

Two years after Leta was born, and many sleepless nights later, we arrived in Philadelphia with a partial diagnosis of Leta’s special needs and we started trying to imagine what it was going to mean to raise a special needs child.  We knew by now that she had Pervasive Developmental Delay, lung disease, was non -verbal and had moderate retardation.  But none of that told us what the journey of loving and caring for our special little girl was going to look like .

One day, she was due to go in for a hospital procedure that required her being put under anesthesia, and we were told that because of her lung disease the procedure could be quite risky.  I was terrified and went in search of a massage to calm my already shot nerves.

I found a place in Chestnut Hill and asked if  they had any last minute cancellations which they did. So I was led back to a room and met my therapist whose name was Beth.  She asked me the typical questions and told me to lie down on the table.  I took a deep breath of relief.  A few minutes later, she walked in and gently  began massaging  two pressure points on either side of my ears.  But then she abruptly stopped.  And she asked me a question:  ” I don’t normally interfere, but someone wants you to know that it is not your fault.”…..and she repeated herself. .” I’m supposed to tell you that it’s not your fault.”  This may seem strange, but I knew immediately what she was talking about and I burst into tears.    I cried like a baby for ten minutes and then thanked her and left.  I didn’t even get a massage that day, but I felt I was  spiritually healed.

For those two years since Leta’s birth, I had held on to tremendous guilt that I had done something wrong during my pregnancy that caused Leta to be sick and not have a healthy chance at life. Maybe I ate bad food, or caught a virus, or drank a glass of wine, early in my pregnancy,that I shouldn’t have.  My guilt was overwhelming…. I carried this child, she was part of me, and I had failed her.   But in this strange encounter, with an American Shaman in Philadelphia, of all places, I was  released from my belief that I had somehow caused Leta’s special needs….

Was this some kind of divine intervention?  Beth explained to me that she had a gift for reading people and she was studying with North American Indian shamans who channel the spirit world .  She explained that she had been forbidden from sharing her visions during this period of study,  but she felt she was channeling something too important not to share it with me.  Was there a greater destiny for Leta that I didn’t understand yet?  I like to think so, because without it, I would not have had the strength to go on and give her the care and love that she deserved.That day, I finally began my journey of  accepting and loving Leta.   I was never going to get an explanation of why my child was given these unfair handicaps.  Leta was clearly going to be my teacher in this life and give me other answers to more important questions.  And even though she has needed me to feed and care for her medically, she  has  nourished my soul for 16 years.Leta can not talk but she offers unconditional love.

Leta can not live without the care of doctors and her daily medicine but she lives within every single person she meets.  She is unforgettable.
Leta is curious and will walk up to anyone that interests her.  The shallow shun from her, the enlightened embrace her.
Leta runs with her heart, her feet sometimes slowly follow.
Leta is willful and tiring but she is also funny and engaging.
Leta is loyal.  She will always be your friend.
Leta is smart, she just has fewer opportunities to show it.
Leta couldn’t walk until she was 3 years old, but she was able to say “I love you mommy”, much earlier.
Leta reminds me  what a real friend looks like.

When Leta turned 8, we discovered Camphill Special School and we were invited into a world that we never thought possible for our little girl.  It was a place that embraced all that Leta offered.  It was not easy sending Leta away to school.  We had so many questions about the quality of her care and if she would be given the love she received at home.  But the truth is, Leta thrives at Camphill because her life is simpler, healthier, less frenetic, more predictable and more attuned to Leta’s needs.

Time marches on at Leta’s pace at Camphill. It is unhurried and manageable. And Leta has fun.  She goes for long walks, enjoys lots of music ,dance and art.  But she also has learned to be a responsible member of a community.  She is given jobs to do, like mucking out the horse stalls or setting the dinner table every night.  Whether it is a big or small job, Leta has  learned to take pride in her work.  At home, she is babied and indulged;  At school, she is forced to find her purpose.  And finally, Leta is loved…no, I mean, she is really loved at Camphill.  And what more could a parent want for their child.  She has found her special place in the world where she is able to create meaning every single day.  I often feel that my other kids would benefit from a life structured more like the life that Leta now has at Camphill.  They love spending time running around the school, visiting the newborn pigs , or just taking long walks with their sister, at her unhurried pace.  There is an energy that surrounds the place, that my other kids really respond to.  We may not talk about it, but it is there.

A few years ago I re-read one of my favorite books by W. Somerset Maughn.  “The Painted Veil”  In it there is one quote, that was lost on me when I read it in my twenties. “Remember that it is nothing to do your duty. That is demanded of you and is no more meritorious than to wash your hands when they are dirty.   The only thing that counts is the love of duty; when love and duty are one, then grace is in you and you will enjoy a happiness which passes all understanding.”In my care of Leta, I have had fleeting moments where I can say I have experienced  grace, but the teachers and co-workers  of Camphill live grace, and breath grace every single day.  They are unfaltering, as far as I can tell.  I am in awe, but grateful that I can know what this looks like even if i haven’t  reached it myself.

As the years go on, and the doctors continue to take care of Leta’s medical needs, I realize that each day that she is still alive, she is not being saved but doing the saving.  Leta is my teacher.  And so is Camphill.