BY KELLY RICHARDS

I’ve struggled today. Do I post about what today is or do I let it pass….. Do I talk about it or let it sit under a rock and coast the day into tomorrow.
Reflection has led me to post about it. I need to. I need to reflect on all the good, not just the heartbreak of what is today.

Today is DD…..Diagnosis Day; for the evil that is GM-1 gangliosidosis.

March 9, 2015. Etched. Engrained. Can never forget it.

One year ago today was the devastation that came to our family. Parents’ nightmare! We heard words that no parent should hear…..

Life Limited
Pass away in early childhood
Palliative Care
No cure
Special needs
Seizures
Loss of skills
On and on and on…..

I zoned out for a bit after that. Michael, being the stoic and astounding husband, took it all in.

I was PISSED! Outraged and mad at God. Beyond words, angry.

…………..looking back, I see God. I see him trying to guide us down the right roads and in clear directions. Intuition nagged at me. God sent us to the heaven- sent medical team we have today. It has taken me a long time to come to this realization. He was always there.

I still believe in miracles, every single day!

I have one in my home, he is wrapped up in a now feeble little boy.

I will never stop believing in the great people, kind people, gracious people and hopeful people that manifest in our lives to this day. That is a miracle, in itself. Thank you!

Cooper Matthew, one year later, is frail. He is a shell of his former self. Pictures are methodically chosen. It isn’t always pretty. I don’t always post the hard things. It is too big a cross to continuously bear.

With his regression has come positivity, and that is why I had to post. One full year, 365 days, we have become diehard special needs advocates. We’ve fought and won every battle we needed this year for Coop. We found the perfect school for Cooper to enjoy quality of life and like peers, learned about equipment and adaptive devices that we never knew existed, been speakers and have been asked to present with some of the best in the field on hospice, palliative care and rare diseases, speaking and hoping we reached one person that needed to hear it on that specific day. The amazing people in our life, one year later, is something I can’t find a word to describe.

We are starting a new adventure also. Boston Children’s Hospital is starting a new venture. They are opening a specialized Lysosomal Disease Clinic this year. Michael and I will be one of four chosen parents to sit on the parental advisory board for this exciting new clinic. We can’t wait to be part of this!

Cooper is so much more than a diagnosis. He forces us to appreciate life more than ever. He has taught us empathy and true love. He has taught his siblings empathy and true love. Cooper has not one sin, not one single unkind thought in his fragile body. He speaks mountains without ever having uttered a single word. All he knows is pure love and to love back. ?

One year in. We take it day to day. Moment to moment.

On DD, we ask for a simple thought or prayer as we travel into year two. We don’t know what it holds or how many years we have to hold onto. A simple pause to send Cooper a prayer would be all we can ask for today!