The First Birthday for a Medically Fragile Child - You will make it through!

One of the the most incredible deja vu moments I have experienced in life was hearing from a doctor "this child will not make it to their first birthday, and if they do he will not be able to walk, or talk, or thrive" for the second time, over 20 years after I had heard it before. When our eldest first came to my parents as a foster child, only a few months old, those were the words where his oncologist laid down the gauntlet. Of course Adam threw that prediction out the window and turned one surrounded by the nurses and McMaster staff who loved him, and has continued to conquer that challenge every year since, learning to do far more than walk and talk - he has become a Special Olympics athlete and a valued member of our community. With him, his first birthday was nothing but joy and celebration, but then we hadn't been there for his birth. It wasn't part of our story.

For our youngest son, his birth is not full of happy moments. I have struggled with many of the memories stopping me in my tracks and literally taking my breath away. (PTSD is a whole other story I will someday have the courage to go into, but not today.) March 7, 2018 was the day where our son was brought back to life and also the day where we lost our son. What do I mean by that? Well we had dreams of our little Liam (what I was planning on nicknaming him) running around, terrorizing the world in his explorations, talking your ear off and growing into a young man who would get a job, fall in love, and have an independent life of his own once he flew from our nest. I do not in any way love my son William less for being the complete opposite of this. I had to say goodbye and grieve my healthy son while falling deeper and deeper in love with my perfectly imperfect son. This grief, this saying goodbye to those dreams, for all the parents of special needs children out there, please allow this to happen. It is the most heartbreaking and gut wrenching process, and while I will never truly get over the grief, by walking through that soul changing fire, I find I am able to breathe just a little easier.

That first birthday was something we had to get through. My biggest lesson learned was from his party. My advice to any medical parent trying to sort through their emotions - wait to gather people until after their actual first birthday. His first birthday party is something I regret and the day after his birthday I wanted to throw another one as our minds were in such a different place. Why was it difficult? We were engulfed in the memories of his birth and the year that followed. We wanted to be happy and to celebrate his accomplishment but we had to go through the lead up to it first. Our emotions were raw and we walked through the days leading up to his birthday in a haze. We threw the party for others, not ourselves (no fault of anyone else but me who planned it!) The moment during the party that finally broke us was when everyone decided to sing him Happy Birthday and he slept right through it because he could not hear or see anyone. It just shattered us.

There is light in this story in that the party made us realize we had to make the actual day of William's birth something just for us. We spent the day going through all the emotions with him in our arms while the other kids were in school, and by the end of the day we were worn but we had made it. Honestly the day after, life wasn't back to normal, but there was a glimmer of light. He had made it past his first birthday and we could pick ourselves up and take another step forward.