Wednesday, February 1, 2012
Born Too Soon
In his early days, we didn't know whether or not he would survive. We took lots of pictures, most of which I am still unable to look at. It was a painful, terrifying time that I actively avoid thinking about.
He was a few days old when this picture was taken. The gold ring in his hand is my husband's wedding band. My son was so tiny, the ring easily slipped all the way up his arm to his shoulder.
It was a time of such intense emotion, words soon became meaningless. Back then, I might have said that I was devastated. But, I'd heard people use that same word to describe a bad hair day or an undercooked steak, rendering the term completely insufficient. At the same time, I suddenly understood what real love is. But, I'll be the first one to admit that I overuse that word myself. I love coffee. But, would I lay down my life for it? Nope.
Once it became clear that my son would survive, I began to worry about the possible disabilities he might develop as the result of his prematurity. Dr. Shrugsalot and Nurse Ida Know were quick to offer absolutely no help regarding this issue. I was left to sort through the dark recesses of my imagination entirely on my own.
I remember standing beside his isolette wondering what he was feeling: Are you warm enough? Are you hungry? Are you in pain? My sweet boy, do you have any idea how much I love you?
That's when the bargaining started. I began to dream of a day when he would be able to answer all of my inane questions. A day when he would be able to talk to me...to tell me what he needed so that I could provide it for him.
If he is blind, I will guide him.
If he is weak, I will carry him.
If he is sick, I will comfort him.
But, please, please, let his mind be okay.
Let him be able to talk to me.
Most of my son's medical issues healed in time but, he was left with significant scarring on his lungs as a result of being on the ventilator. When he finally left the hospital on his original due date, he came home attached to an apnea monitor and an oxygen tank. Getting out of the house was difficult with all of the 'extras' and we came to refer to the combination of our son and his medical equipment as 'the triplets'.
He went on to develop appropriately for his corrected age, which is based on due date rather than the actual date of birth. He rolled over, sat up, walked, and talked right on time. I was, as you might imagine, especially happy about the talking part.
So, yes, it did feel like the ultimate cosmic bitch slap when he developed autism and suddenly lost all of the language skills he had previously acquired.
It has been exactly 5 years since I first uttered those terrible words to his pediatrician, "I think he has autism," and, thus began a new journey for our family.
As hard as this experience has been for me, I am always mindful of the fact that it is infinitely more difficult for my son. He has already faced and overcome more challenges in his 8 years than most people will accomplish in a lifetime.
Tomorrow, we'll celebrate his arrival into this world and I will push aside all of those bittersweet memories. It is the anniversary of the day he made me a mother and, ultimately, a better person -- for that, I am forever grateful.
Happy Birthday, sweet boy!
You are loved more than you know.