October is Down Syndrome Awareness month and I wanted you to meet a little friend of mine who is rocking that extra chromosome.
His big sisters go to school with my kids so I’ve known his family for several years now but it actually wasn’t until about six years ago that I got to know his mama really. She was pregnant with Jase when her oldest daughter and my son were paired together on a school project. She was also just learning that the baby she was carrying possibly had down syndrome.
Everyone wants a happy and healthy baby and when you are facing the possibility that your baby might not be “healthy” it can be hard. But over the months I was privileged to watch Christi and her family not only come to terms with the diagnosis but to have a deep joy in the gift of their son. They navigated the uncertainty with grace and a deep faith that God was at work. Certainly there are challenges that come with that extra chromosome but Jase and his family rise to meet them every time.
I feel in love with him the first time I met him with those beautiful blue eyes and his red hair. Over the last five years I have been able to take his pictures on different occasions and I can honestly say it is a special delight every single time. His smile and sweet spunky personality just pulls you in.
One of the best things born out of Jase’s diagnosis has been the creation of Genes of Joy, a non profit organization whose goal is to establish a community rich in support for those families touched by DS, provide resources for those families, as well as to raise awareness about down syndrome. It has been wildly successful with an annual buddy walk and respite days that serve the community. They also provide baskets through local hospitals to the families of babies born with ds that are full of resources and contact information so they don’t have to feel overwhelmed or alone. How great is that?
It has been such a blessing to be a part of Jase’s life and to see how his family has leaned into his diagnosis and look for ways to help others who also walk this journey. There is joy and delight and an abundance of love and grace that spills over.
Down syndrome will affect 1 in every 700 babies born in the United States. Children born with DS will go through all of the milestones typical to any child…they just meet them at a different pace. As adults with DS they have jobs, manage relationships and navigate life just like everyone else. They might have some additional things to cope with but with love and support from their families and communities they are just as important and contribute just as much to society as “normal” people.
Indeed us normal people are better off for having such resilient and determined friends in our lives.