Day 9: A letter to my son Jaxson
You’ve taught me that there is no such thing as “can’t…”
When you were diagnosed with Dyrk1a Syndrome back in April it scared me. The genetic doctor called me with the startling results. Evidently this Syndrome wasn’t on their radar when they did the WES test back in December 2017.
When she started to name off the many different features and symptoms of Dyrk1a Syndrome, it scared me even more. We already knew that you were a bit delayed but we were hoping this was something you would eventually outgrow. The genetic team told us the following symptoms and features:
Seizures / Cerebral Palsy
Fine motor delays
And the one that scared me the most was that you wouldn’t be able to live on your own or take care of yourself when you got older. I was scared because who wishes that for their child? We want our children to succeed, spread their wings and make it on their own. It was a blow.
I had so many different emotions.
We eventually scheduled an Early Steps consultation because you qualified automatically with the genetic condition. As we were doing the evaluation I found myself saying, “I’m afraid he can’t do that…”
The therapist smiled and said that “we would do everything in our power to help him...” That’s when I stopped with the word can’t. I shouldn’t think like that, I shouldn’t automatically assume you can’t do that because of the features and symptoms the genetic doctor cited.
I didn’t think you would overcome your feeding difficulties, but you showed us you can on May 2017.
I didn’t think you would start gaining weight, but you showed us you can on August 2017.
I thought you wouldn’t start rolling over, but you showed us you can on October 2017.
I thought you wouldn’t start crawling, but you showed us you can on January 2017.
I didn’t think you would ever start to walk, but you showed us you can on July 2018.
I didn’t think you would be able to communicate what you need, but you showed us you can on August 2018.
You show us each and every day that you can, and we are so proud of what you have accomplished and will continue to accomplish. You have inspired me to never give up and to tell myself I can.