The 9 Apology Letters I wish I could have written last week:
Dear 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 shocked 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 on your 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. 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 spread. 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 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. I didn’t mean to change the subject and make it about me. 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 with you and your family and not at the beach. I will call you in a few days. 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 ok. 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 and she wanted you to know that she was sorry for your injury. That is why she kept saying “ boo-boo” and making a circular motion with her hands on her chest. 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 that is why she didn’t want to leave you alone. I hope we meet again.
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. 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 if but Leta got hold of my phone…again. Hope you are having a wonderful summer.
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.
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.
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.
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)