I had planned to write a moving and deep post about world prematurity day. Since my friend, Nicole… Kenna’s mom took care of that with her beautifully written post. Instead, I will take another approach.
I would like to scream that from every roof top around the world. Prematurity sucks. It sucks for the parents. It sucks for the siblings. It sucks for the grandparents. It sucks for the extended friends and family. In a word… it SUCKS.
Yes. I have a beautiful boy who is in better shape than most would expect for a 24 weeker. Yes, I am a stronger person because of having my preemie. And yes, I made some amazing friends in the wonderful nurses and doctors at Alta Bates Hospital. Would I trade all of these positives in for a son born at full term. Hell yes.
And now, I have a new battle ahead of me, thanks in most part to Sam’s prematurity.
When we were in the NICU, I obsessed every day that Sam would get NEC and die. I was consumed by this fear. We were lucky enough to never experience the soul crushing blow of NEC, but the anxiety of it did a number on me. Once we were released from the NICU, I turned all my fear and anxiety on to autism. The chances of autism in premature babies is over 5 times higher than for term babies.
At every home health visit and every doctors appointment, I would ask about autism. I wanted to know the signs. I pointed things out that worried me with Sam. Each time, I was reassured that Sam was perfect. When Peter and I left for a long overdue vacation, I was worried about Sam, but not overly. Coming back after six days away, I was able to see things more clearly. I took him to his Occupational Therapy appointment, and voiced my concerns. The therapist voiced hers. I wrote about this on Wednesday.
We saw the speech therapist on Friday, and the results were not great. It appears that Sam is on the path to an autism diagnosis. Yes, there is still a chance that with speech therapy we can correct all the red flags that we are seeing and he will be fine, but it doesn’t look great. The next few moths will be long and hard and filled with quite a few chewed nails and tears. But most of all, I think they will be filled with anger towards prematurity. Once again, prematurity will be impacting me, my husband, our daughter, my parents, our extended family, and our friends. Worst of all, prematurity will once again be taking a toll on Sam – my wonderful little boy who has already been through so much and doesn’t deserve another thing to go wrong in his life.
So, today, on World Prematurity Day I saw SCREW YOU.