As parents of these beautiful children, we understand something that isn’t always so evident from the outside: Down syndrome is a blessing. So let these kids into your classrooms, your studios, your camps, your programs, your sanctuaries, and if you’re lucky, you might just catch a glimpse of the magic. But you’ll never know if you don’t try.
Right now the Centers for Medicare and Medicaid Services is drafting guidelines for their Coverage with Evidence Development in the use of the new Alzheimer’s drug, aducanumab, excluding people with Down syndrome and other intellectual and developmental disabilities (I/DD). A quick comment from you could change the course of Hope’s life! Please help.
I’m not going to justify the life of a person with Down syndrome, explaining chromosomes and how they give back to the community, and I promise to never ask you to explain or defend your child’s existence either. All I’m going to ask is for you to consider the possibility that raising a child with a disability is mostly about simply raising a child.
There is truly nothing I want more than to tell our local community that we are here to stay and that this town and all it has to offer is for Hope, too.
Our story doesn’t end in failure, thanks to the confidence instilled in us by the National Down Syndrome Society, the leading human rights organization for individuals with Down syndrome in the U.S., who caught us with outstretched arms while we were falling in a tailspin this past winter.
I never really knew where we would fit into this awareness month until January 2020 when Henry, Hope’s baby brother, was denied entrance to an age-appropriate preschool because of his upper limb difference.
There is no greater gift you can give this World Down Syndrome Day than to consider whether you have room to shift your perspective on what makes a person valuable and what you or your family can do with this privilege.
In the spirit of virtual advocacy, this year we accepted the new NDSS 32.1-mile challenge, which kicks off tomorrow and runs for three weeks. Matt will be rowing his way to 32.1 miles and I’ll be on our Peloton bike, riding under the #Racingfor321 tag. (If you’re on Peloton, please join us!!!)
Instead of being scared by tests and appointments, just buckle up and enjoy the crazy ride, because whether your pregnancy is typical or not, your baby will thrive if you smile, laugh, throw your arms up, and declare an unconditional love.
Take a moment to enjoy the beauty of Hope’s fifth year, which has been our true blessing to witness. Happy 5th birthday, Hope!!