Rest, rest my little boy. My heart breaks when I look at you in that cold, metal crib. I am glad that I am here when you open your eyes and I am the first person you see. After all, it is the least that I can do, be here for you. We’ve been through this before. The first time you didn’t know me as well but I know that you could sense me and yearned for me. This is the fifth time that you’ve been hospitalized and I know it won’t be the last. Why does this happen to you? I really don’t know. I know the physical reasons why you keep getting sick but I still don’t understand why you were born with a defect that has made you suffer so much. What did you ever do to deserve this? I am trying my hardest to stay strong and smart for you, your brother and your dad. How much more must you endure before you “outgrow” this pain and inconvenience? Instead of being in this hospital you should be at home, playing your drums, throwing your toys around, being a little boy. When I go home and see your empty crib, your clothes, your high chair, my heart melts and I just want to cry. Without you there I feel like I have nothing to do! You sure keep me busy and on my toes. That big brother of yours has been such a good boy. He suffers too, you know. He just wants to play his video games or play on the computer. I think that’s his escape. He won’t say anything about you or even ask where you are. I believe that he is so scared to know or think that something bad could be happening to you. I wish there were two of me so that I could be with both of you at the same time. I am so lucky to have two wonderful little boys who love me so much. I never knew that love like this existed until you came into my life. I live for you and I would die for you. Enjoy that thumb!
I wrote this on 1/4/10 during Emilio’s fourth or fifth hospitalization. I knew the fight wasn’t over and for the next five years he would be hospitalized at least ten more times. He was born with a birth defect that many doctors refer as VACTERL syndrome. VACTERL or VATER association is an acronym used to describe a series of characteristics which have been found to occur together. In Emilio’s case, he had C, cardiac abnormalities, TE, as in tracheoesophageal fistula, which is a persistent connection between the trachea (the windpipe) and the esophagus (the feeding tube), in his case, however, the esophagus was not attached to his stomach, and R for renal or kidney anomalies. He needed surgery right away or he would have died. He was transferred to Columbia Presbyterian from Northern Westchester Hospital. He was rolled into my room in an isolette, hooked up to all kinds of tubes and monitors. I said goodbye to him and the nurses handed me his picture.
I had a c-section after which I lost half the blood in my body and therefore was not allowed to leave the hospital. The guilt and pain I felt at the thought of my little boy arriving at the hospital alone was more than I could bear. I kept going in an out of consciousness, I was incoherent and cried as I looked at his picture for three days straight. As soon as I was allowed to leave the hospital the first thing I did was see my baby boy. He shared a room in the NICU with two preemies. I remember he looked like a giant next to them as he was 8lbs at birth and quite rotund! We drove from Patterson to NYC every day for the next 28 days to see our boy. There were setbacks and tests and a lot of documents to sign. Every time I signed a consent for a procedure, I felt like I was signing his life away. But what choice did I have? If I didn’t sign, he could die, and if I did sign he could also die. Meanwhile, I had a six year old at home whose dreams of having and holding his baby brother, whom he had waited for so long and imagined many adventures with, were shattered. He saw his brother for a split second right after birth and before he was whisked away to the NICU. In his mind, his little brother had died. He refused to visit him at Columbia Presbyterian and did not speak about him at all. I believe that in his mind it was easier for him to think of his brother as being dead than to face the possibility that he was alive, but wouldn’t be for long.
When we took him home from the hospital we thought that he was “fixed.” Eight months later, however, the illnesses began and would not stop until seven years later. The first time he aspirated formula into his lungs and spent ten days in intensive care. Then six months later, pneumonia, the first of many. So many tests were done, the poor kid was turned upside down and inside out. Yet, no way to cure him, just “maintain” him. His treatment regime was the same as someone with Cystic Fibrosis, except he did not have CF. Looking back, I think we pretty much spent every single holiday at the hospital: Thanksgiving, Christmas, New Year’s Eve and New Year’s Day (my birthday), Easter and fourth of July. We even had to cancel his brother’s birthday party one time and THAT broke my heart.
picillo4Fast forward to 2015. We took Emilio to Cincinnati Children’s Hospital where they determined the cause of all his illnesses. Within a month he had an aortopexy to repair his severe tracheomalecia as well as a laryngeal cleft repair. He went from taking five different medications, four daily nebulizer treatments and two daily chest PT treatments via SmartVest, to NOT needing any medications or treatments at all. What a giant weight off our shoulders. We don’t need to carry all that equipment or a backpack filled with drugs with us on trips anymore.
Now we can fully focus on his autism, his global delays and making up the countless days of instruction and therapies that he missed due to his recurrent illnesses. Now we can relax a bit and relish the countless times that he asks random people what kind of car, along with model and color, they drive – and enjoy their reaction when we see them months later and he can recall this information! We can enjoy “Piano Peter” as he calls his piano teacher, and Mr. Keith, his Tae Kwon Do teacher. We can enjoy his sense of humor, discovery and emerging speech. We can calmly cuddle at night in his bed and read Dr. Seuss’ ABC for the 500th time…. “Big A, little A, what begins with A?” ANGEL, our little angel.