This morning, I opened up my Time.Hop app to discover this post from exactly 3 years ago. Three years have passed since I “came out” on my blog that there was something wrong with our son. I read that post with sadness this morning, and with a lot of if onlys…
If only I was right back in 2011, when I hoped that the only thing really wrong with my 4 month old baby boy was his vision, and that was why he wasn’t grabbing at toys or meeting other milestones. I was wrong.
If only I was right to hope that first brain MRI on January 24, 2011 showed no abnormalities, and would have allowed us to cross that worry off our list. I was wrong.
If only those early worries about our son’s life and development were a distant memory of his babyhood. They aren’t.
If only, if only, if only.
Three years ago, I became consumed with figuring out why Grayson was different, and how to make him better, and how to care for him in such a different way than all my friends were caring for their infants. It was overwhelming.
Caring for Grayson now isn’t so much overwhelming as it is profoundly sad. Tube feeding him, holding his head while he vomits multiple times a day, pumping him full of medication three times a day, and pushing him around in a wheelchair are all, unfortunately, normal now.
Normal, but so sad. I sometimes wonder what kind of kid Grayson would be if he was developing typically and wasn’t sick. Would he be an outgoing extrovert like his sister or an introvert like his parents? At three years old, would he be playing soccer or attending preschool? What would he be “into”?
I rarely, if ever, cry about Grayson anymore, but as I write this, I have tears in my eyes. There is so much good about Grayson, so much. He has completely changed my life and my attitude and I am a better person and mother because of him. But all that comes at such a high price: his life. His life spent listening to the same songs over and over and over in the same chair with the same one toy in his mouth- day after day after day. His entire life will likely be spent as an infant: in diapers, and relying on others to take care of even the simplest of tasks for him, tasks that his one year old sister mastered months ago. It’s just not right, and it’s not fair, and I don’t understand it.