My son is the son no one would choose.
He has Down syndrome and Leukemia.
Would I take away the Ds?
Would I take it away even if I knew he would also get Leukemia?
Am I cruel to say no?
Am I cruel to say it is a part of who he is?
The only way to take away the risk is to never let it exist.
This was my choice.
Am I cruel?
This was my initial reaction to Maureen Wallace's post on the "Good News" comment on the Today Show.
(read with sarcasm intended)
MaterniT21 has done it again.
Any press is good press.
It gets people talking.
And buying the test.
For preparedness of course.
The article seemed to be balanced but it is her view that stirred me to think.
Her annoyance with Charlie's lack of response to her signs and her comparison of Charlie to his sister are honest but not exactly necessary to the article. I wondered her motive for sharing in this context.
Her fear of the known is what is most disturbing.
What is an absolute known about Down syndrome? Other than the additional chromosome, the life itself is certainly unarguably, an individual experience. So why didn't it seem this way?
I wondered why she would use people like my son with his dual diagnosis of Leukemia and Ds to question the good news comment. I didn't understand.
Well the good news is this - he is alive.
He is a survivor.
He has survived all of my insecurities and his fathers, even those narcissistic projections we placed on his life, and of course the ones placed on him by statistics.
He has individualized his life thus far and proven that this really is about him and not about me or his dad or his Ds.
I met a mom recently who was pregnant with her baby girl who will be born with Ds. I asked her if she had a name picked out yet. No, she explained many of the ones they had originally thought about were difficult to say and hard to spell so they were trying to come up with new names since the diagnosis.
Already a destiny has been set for this individual child.
This was at a conference about Ds. The mom was there with other new moms to be and parents of babies with Ds. They were there to learn all they can about this diagnosis. I stuck with them even though I am 16 years into the Ds diagnosis. I have a need to be there for them for my ears are almost as big as my mouth and I love babies. I love the endless individual potential of babies and how most new parents embrace this with gusto.
I tried to listen to the speakers as if I were the new mom. And it hit me how often the information was so generalized. On the first break I beelined it to the pregnant mom and told her to listen but to hear the words "some not all". I wanted to protect her but also to protect her baby from the limiting statistics.
But it seems as if, hard as we try, the bigger message that prevails is just the opposite of some not all. What we seem to believe is most.
While I read the article from Maureen Wallace I felt kicked in the gut.
There was a plea for change but not a motive. When I read "I love my children with every fiber of my being"...I thought, but not every fiber of his...I did pity her. I couldn't help it. Not because I have evolved. Not because I don't have frustrating days. Because it was about her and not him.
And then I felt responsible.
It made me so sad.
Sad for the new moms and dads.
I hold some responsibility for the fact we didn't do enough to make this diagnosis,this extra chromosome become good news.
It made me sad we haven't provided a welcoming place for people who develop in a non traditional way. It made me sad a mom pleads for change that is way overdue. It made me sad that modern medicine has researched a way to eliminate and not illuminate a person with Ds.
The Ds community is stuck.
Stuck in a mindset that being born with Ds is bad news.
My hope is the new generation will do more, will respect more, will provide more. My hope is they will include my son with Ds and Leukemia in the efforts (not as a research tool but as an individual). My hope is new moms won't be frightened by the known or unknown. My hope is that the lines between the person and the disability will be indivisible and enough to call good news. My hope is for survival of the individual.
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