What is something unique and special about your child with trisomy that you wish more people knew?

Christopher is such a loving little man. He adores his family. He speaks with his eyes and facial expressions. He’s a lot smarter then anyone gives him credit for. He’s such a fighter with life even after all He’s endured. Christopher is strong, charming and mischievous. I always thought he would have been my naughtiest kid if he was able. He loves being in the kitchen, he loves being outside and going on adventures. His favorite movie is Joseph and the technicolor dream coat.

Why do you believe raising awareness about trisomy conditions is important, and how can others make a difference?

Nowadays with all the technology and our kids living longer it’s important for this information to be out there for new parents facing the scary diagnosis. 27 years ago was much different then how it is today. We have come a long way and we need to continue to advocate for our children and make it easier for the children coming into the world. Raising awareness with the families and the doctors is huge. Many doctors still do not see the importance of our children so we need to keep showing them that our kids are worth every breath of life and fight theu have in them. Our kids no matter the diagnosis should have the rights like all other typical children and be offered all the life saving treatments as any other child.

During Trisomy Awareness Month, what message would you like to share with the world about your family’s journey and the trisomy community?

After 27 years I can’t say this journey has been easy. I was told he would not live to be 3 months old and here he is at 27yrs old. I had 2 other children after Christopher. It does affect the entire family. Fight for your child. Advocate for your child. Be the voice and eyes and do not hold back. You must fight with your child. As I am aging with my son we take 1 day at a time. We continue to make his quality of life the important reason of how we make decisions for his future.

He has been inspiring to his siblings, to his nurses and his doctors. He is my life and he shows me he loves me. Being a mom with a young man who is super complex and needs 24/7 cares is not easy. Self care is a must, breaks are a must.. as you can get burnt out fast if you don’t have the right supports in place. It’s not easy by any means and this life is a Rollercoaster of ups and dows. Not ever knowing what the future will bring so having a strong support system on place and having a community and having your faith is so important.