1 year ago today...

Today is the one year anniversary of Coopers Williams Syndrome Diagnosis. This day last year was easily the hardest day of my entire life. I never could have imagined how devastating 4 little words could be…. “It came back positive” Honestly I still have very hard days, There are many times that I still cry myself to sleep and not because Cooper isn't amazing, this little man is the world to everyone he meets, but because I am sad that his life will not be easy.

 And also because this diagnosis means that Taylor's life won’t be easy. My heart breaks for her. I can give everything to both of them but I can’t be here forever. I panic about what life will be like for both of them when Dusty and I are gone. Cooper will be given every chance that I can give him but in the end I know that Taylor have to be his biggest support, she will have to take over when I am gone and frankly that is devastating to me. Just like this was not the path that Cooper deserves, it was not the path that Taylor picked. And to be, honest it makes me VERY angry.

I hear moms say all the time, I wouldn't change a thing about my child. I love Cooper, more than anyone could imagine, but trust me if I could take this away from him I would do it in a heartbeat. I would do anything to replace the deletion in his genes. ANYTHING. I would give up anything… do anything… but I know that I can’t, so I treat him like any other child. I work harder, support more and worry more than I could have ever imagined. 

People often say to me. I don’t know how you do it. Well, I don’t have a choice, Cooper and my whole little team doesn't have a choice. So we move on. This one year anniversary marks just one more day . We just move on. I refuse to let this diagnosis define who we are and what we can become. I refuse to let Cooper become a statistic. Come hell or high water I will do whatever it take to insure that both of my children have the best life possible.

I am sure there will still be many more hard days,( this week has been particularly difficult). But I have found peace and we are all beyond blessed to have this little man in our lives. Would I change his diagnosis yes, but I wouldn't change his soul. He is the light of our lives and a blessing to the world.  I feel lucky that we have the knowledge of families who have struggled through this journey before we did. Cooper has incredible resources, a supportive family and a great WS network . Together we can make his life far better than I could have ever imagine a year ago.

Thank you to all of my dear friends and family who have held my hand through this first year. The educators and doctors who have given me the knowledge to be Coopers advocate and for my wonderful husband who has been the rock of our family. This year is a just one more brick that we will lay to build the foundation of a better life for my little man, and I am blessed and humbled to have you all along for the journey.

xoxo