Every Sunday we go to church and sit in the same general section of the sanctuary — inside middle aisle approximately 5 rows back. It’s not the ‘young families’ section of the church (that’s to the far right), so we are usually surrounded by, ahem… “seasoned” men and women and the occasional family with older school age children. Honestly, I was a bit nervous about our sanctuary seating arrangement at the beginning, but for several reasons this was a section that I needed us to be in.
What would I do about the people in ‘our’ section if Isaac became too distracting? Were they aware of, you know…why we are a different family? They are Christians, so I had to assume they would be
gracious… but people are people; what if they weren’t? It was a honest concern.
Boy, was I wrong. After exactly 9 seconds of some possible hesitation, my little boy and his extra chromosome had an active fan club. People clamor to sit near us and ask to be a part of Isaac’s worship experience. (His new thing is a jump-flap-spin-clap worship dance in the aisle during praise. It’s awesome.) On a weekly basis members of our larger church family find us in the foyer or in the halls describing what a blessing Isaac is to them during service. “I just can’t help but praise the Lord when I see how Isaac lives through the music.” That makes me so happy. (We don’t need to talk about how he shouts AMEN when he thinks prayer is going too long.)
Let me tell you, when people are AWARE, they are just fine. In fact, more than that, they are great! They are encouraging and invested and protective and engaged. All fear on their part… and mine… is gone. All that is left is relationship. This is why dedicated activities (or months) to bring awareness to topics like Down syndrome are so very important. When people don’t know, they get scared. And when they get scared they get weird and say and do hurtful things, which can destroy relationship all together. Of all the things in all the world to NOT be scared of, an extra chromosome is one of them!
There are three different types of Down syndrome (Trisomy 21 being the most common) and all three kinds are considered a spectrum “disorder”,which means there is no magic recipe card to describe a person with Down syndrome. Some are considered very high functioning, living alone as an adult and have successful employment, even marrying and maintaining a home. Some need long term emotional and/or physical support through their lifetime. Just like with any newborn, there is no way to anticipate how a child with DS will fall on that spectrum.
In fact, some of our chromosomal friends are WAY AHEAD of their neuro-typical peers in some areas while lagging behind in others. The truth remains, that extra chromosome is just a part of who that child is; perhaps adding some extra struggle in areas, but certainly lightening the load in many, many others.
In the US the stigma against Down syndrome is starting to lessen. Starting. There is still a very high pregnancy termination rate for couples who receive a prenatal diagnosis of Down syndrome. And in some countries that termination rate is quickly approaching 100%. This absolutely crushes me. I can’t imagine what it does to the Father’s heart.
Thankfully, the stigma in China is also starting to change. Four years ago children with Down syndrome were destined for a life of medical neglect and institutionalization. Now, through focused advocacy groups like The Bamboo Project and other agency orphanage partnerships, many Chinese children sporting an extra chromosome have a HOPE. A hope for health, nurturing, education and most importantly LOVE! Can you imagine when a bundle of chromsomally enhanced joy is at the center of a family’s heart? It. Is. Powerful. For the child, for the family, for those in the now “cool” section of the Sunday service.
If you would like more information about adoption of children from China with Down syndrome, please visit these resources: