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)