My Thoughts on Down Syndrome and Society.

This ended up being longer than I expected but it turns out I have a lot of thoughts on the subject and they needed expressed.  October is Down Syndrome awareness month and I thought this was a fitting time. 

 I was blessed a little over two years ago with a little boy by the name of Ronan who also happens to have Down Syndrome.  This is a fact I don't bring up when introducing him.  It's not like " This is Ronan. He has Down Syndrome."  This is because it has become more of a side fact and his Loving, determined, albeit stubborn at times, personality has overwhelmed any diagnosis he's been given.

With that said I learned rather shortly after Ronan was born that the abortion rate following a prenatal diagnosis for Down Syndrome is 90%.  I found that alarming and disturbing.   The perception people must have of Down Syndrome for 90% to terminate their pregnancies over the diagnosis.  There are tests out there being developed to make it easier to obtain a Down Syndrome diagnosis earlier and easier in pregnancy.  The stated Purpose of these tests is to prevent Down Syndrome births. 

The severity of this was driven home today when I was on a mom's message board I frequent.  A mother on there had had a nuchal translucency test and was told she has a 25% chance of having a child with Down Syndrome.  Based on that test alone her doctor told her she needed to decide whether to terminate or not.  It left me feeling sick.  There is a 75% chance her baby doesn't even have Down Syndrome and without even offering a CVS or amnio he wants her to consider terminating.

I was astonished by the idea that a doctor would push termination at even the hint of Down Syndrome as though it was this plague that needed to be extinguished.  Our society has come a long way.  Institutionalizing children with Down Syndrome is no longer what you do in America.  The schools have opened their doors and allowed children with Down Syndrome to learn right beside all of their peers.

Because of the brave fight of others before myself great strides have been made to welcome people with Down Syndrome into our communities.  The amazing thing everyone discovered was people with Down Syndrome can be and are productive members of society.  They hold jobs, go to college and get married.

One case I've talked about before but I'm bringing him up again because this baby holds a place in my heart.  He was never given a name.  He was merely called Baby Boy Doe.   He was born with the same two diagnoses Ronan was: Down Syndrome and Esophageal Atresia.  Esophageal atresia means his esophagus did not connect to his stomach meaning without surgical repair he would starve to death.  His parents refused to allow the surgery so the hospital took them to court.  And the courts ruled Baby Boy Doe was not a person and they could deny the surgery.  So they let him die despite the fact a family wanted to adopt him.

After that the Baby Doe law was passed where parents could not withhold life saving treatment from a disabled child.  Ronald Regan helped to pass this and He was quoted saying "Our nation’s commitment to equal protection of the law will have little meaning if we deny such protection to those who have not been blessed with the same physical or mental gifts we too often take for granted."

Honestly every time I think about Baby Boy Doe it makes me cry.  But even though a law has been passed to help future infants what about the abortion rate?  Have we really changed our opinions that much as a society?  Why is Down Syndrome the diagnosis no one thinks they can handle?  And it's the same thing even though there are waiting lists of hundreds of families who want to adopt children with Down Syndrome the abortion rate is still at 90%.

This should also make you think if there are so many families who want to adopt children with Down Syndrome then they must know what I already know.  Before Ronan I'd never really been around anyone with Down Syndrome.  But I can tell you with Ronan he is amazing.  He conquers everything thrown at him with great strength. 

He must of had a bad dream the other night because he was crying in his sleep. I picked him and rocked him and he clung to me.  I was thinking about how he only wishes for what every other child wishes.  He wants to be loved, he wants to be happy and he wants to be secure.  I have every intention of giving Ronan a full life.  I have every intention of ensuring he gets a chance at his dreams and desires just as I will my other children.  I will fight for him.  I've already had to.  But each battle gives me more strength and I know we'll make it.

Wrapping it all up if I could talk to a woman who has just been given a diagnosis of Down Syndrome for her baby I would tell her Down Syndrome isn't a death sentence.  This child will be one of your biggest blessings.  He will show you that the most amazing things happen in the small things.  Tiny victories are as big as moving mountains.  You will be changed and your life will be different but you'll come out on the other side and you'll be better for it.

Two and half years ago I sat stunned unable to think beyond the next moment.  I saw a huge diagnosis and nowhere to turn. I felt alone and I cried to God to help me make sense.  And he did in several very amazing ways. But now here I sit typing this and Ronan is no longer Down Syndrome.  He is the little boy who rushes over when I'm doing laundry so he can pick all the socks out.  He is the little boy who follows his big brothers around and watches their every move.  He is the little boy who tries to get out of his therapy by signing "Thank you" and walking away.  His favorite color is green, he can sign around 15 words and can understand more.  He recently learned how to ride a tricycle and he loves Elmo.

He is no different than my other children.  He is my son. Ultimately I wish that all those considering terminating because of  Down Syndrome would see what I see.  Their child will be their child not a diagnosis.