When Macyn was two we went to a Christian Family Camp. Macy was on oxygen 24/7 at the time, but we brought all our tanks and a concentrator and we had a blast. On the last day of camp, we were sitting around the breakfast table with a couple we had gotten to know. They were older and listened to our story of adoption and Down syndrome with attentive ears. As we were saying our goodbyes they asked if they could pray for Macyn,
“Of course, we always appreciate prayers for our girl.”
They came over to Macyn, who was sitting joyfully on my lap, and placed their hands on her shoulders and began to pray. They prayed for her to have strength and a strong immune system and for her lungs to be healed fully. I nodded my head and gave the occasional, “Amen” in agreement. Then the woman prayed this;
“And God, we know you have the power to heal her Down syndrome. It is only one extra chromosome and you have the power to take that extra chromosome away.”
Wait! What?
***
The next summer we were in Hawaii with Macyn. God had in fact healed her lungs so she was no longer on oxygen. As we ran in and out of the waves with our daughter we got to chatting with a couple who had just recently moved to Maui. They shared their story with us as we shared bits and pieces of ours with them. At the end of our conversation they asked if they could pray for us.
Sure! I’ll take all the prayer any time.
“Dear God, thank you for this family and this child you have given them. Thank you for healing her. Continue to make her strong. And we know you are powerful and capable of anything so we ask that you heal her Down syndrome.”
Wait! What?
***
In both of the above circumstances I was shocked and appalled by the prayer for Macyn to be healed of Down syndrome. Not once did we say anything negative about Down syndrome or about our daughter. At that point in life it hadn’t event crossed our minds that Macyn having Down syndrome was a bad thing. Maybe it was the fact I was a young mom and she was my first child. Maybe it was because I was at a loss for words, but both times I just gave a weak smile, made an excuse to have to leave, and walked away with my perfect daughter in my arms.
I said nothing!
And I recognize our situation as parents to children with Down syndrome is so different than most. Both times, we chose to adopt our children, we chose Down syndrome. We were not afraid of it, or disappointed by it. We felt no sense of devastation or remorse (that all occurred for me during my infertility journey.) By the time August joined our crew we felt down right lucky to have another kid with Down syndrome.
I recognize our reality is different.
I do not use our reality with Down syndrome to devoid another’s reality.
The thing is every parent I meet whose child has a new Down syndrome diagnosis, is scared, disappointed and often times devastated. It is not uncommon for me to meet a mother with an in utero diagnosis who tells me, tears on her cheeks, they are continuing to pray that the diagnosis is wrong and they hold on hoping their unborn child in fact does not have Down syndrome. The termination rate for an in utero diagnosis continues to be anywhere from 60-90% (depending on the source and the country). In this day and age, the main purpose for prenatal testing is so parents can choose to terminate, and this prenatal testing is common procedure these days.
I have to note here, I have no judgement for you, dear sweet parent who is feeling devastated about your baby’s new diagnosis. I have only love for you as you pray the diagnosis is a mistake.
This is not the first time I’ve mentioned these things. I mention it again because six years ago I said nothing when those strangers tried to pray away my daughter’s Down syndrome, and I have found my voice and refuse to be silent any longer.
The majority of people in the developed world still view Down syndrome as something negative. This has to change.
This past weekend our family put together a team of loved ones and joined forces with our favorite Down syndrome organization, Club 21, and we walked to raise money and awareness for Down syndrome.
One of my best friends came and brought her son who is Macyn’s age. Later that night, as they were saying their prayers before bed they had this conversation:
“Mommy, can we pray for Macyn?”
“Sure bud, but why?”
“You know, because of her Down syndrome.”
“Oh buddy, Macyn is always going to have Down syndrome. It’s part of who she is.”
“But that’s so sad.”
“It’s not sad at all. Macy has a family who loves her and lots of friends who love and support her. She is happy just the way she is.”
It’s not sad at all!
I repeat,
It’s not sad at all!
Here’s the best part, Macyn is made in the image of God. She is hand crafted by a creator who adores her and intended for her to be just as she is. That extra chromosome, the one people pray away, the one people think will ruin their life, it was beautifully and purposely added to every single cell in her body, by a creator who thinks she’s the jam!
Your child with Down syndrome is on purpose.
Friends, we have to start spreading this message.
We have to start recognizing that the difficulties and struggles people with Down syndrome face are not because of Down syndrome, but because of a society which still refuses to make room for them and celebrate them just as they are.
As Down syndrome awareness month comes to a close, l encourage you to be like my friend who went out of her way to make sure her kids are around people with Down syndrome, which then opened up a door for life changing conversations like the one she had with her son. Because of her intentionality and her ability to recognize Down syndrome for what it really is, her son will not grow up feeling the need to pray away someone’s Down syndrome. Rather, their voices will join ours as we Shout Their Worth!
My prayer for the future for Down syndrome is parents would meet their child’s diagnosis with a sacred elation. High fives, instead of devastation. While they may find themselves mourning the loss of certain expectations, or what they thought would be, I pray our unified voices, shouting the worth of people with Down syndrome, would have been so loud, those parents with a new diagnosis will have heard us and rather than hold tight to the hope of their new diagnosis being a mistake, they will hold tight to the hope that in fact their child with Down syndrome, is a freaking masterpiece! And they are lucky to have a front row seat.
Sweet Macyn during her oxygen days.