Monday, October 15, 2012

The most frustrating thing about Down Syndrome (Day 15 of 31/21)

I think the most frustrating thing about have a child with Down Syndrome is the inability to convince people not in the DS community how incredible it is to watch Cate grow up.  I am pretty isolated in reality - our community accepts Cate, her school loves her, my family adores her, and our friends embrace her.  We have never had anyone say anything terrible to our faces.  I tend to read good things for the most part on the DS momma blogs and the Baby Center DS board, and most really bad stories are second hand so easy to sympathize without actually having to experience.

But every once in a while I read something out there that shakes me out of my perfect world.  I could list plenty of links to articles or comments on articles where people have said horrible things.  There are the articles on Materni21 - a prenatal test that some says will cause the population of people with DS to significantly decrease if not be eliminated eventually.  I don't believe that elimination is likely but to read the comments of doctors and professionals not to mention the general public about how great the ability to more easily abort a child they perceive as imperfect is makes my heart ache.  Then there is this journalist in Europe, Samantha Brick, who not too long ago after documenting her frustrating infertility issues actually said in a televised interview that she will abort if the child has DS.  Really - this baby she wanted enough to go through that type of medical procedure and major expense, she wouldn't want if there was an extra chromosome?  Of course there were comments from people in the DS community telling her how wrong she was and people on the flip side telling her its is her choice and they understand.  The reason that particular story hangs with me after months is that she said that she knew herself and she couldn't handle a child with special needs.  No one can know that because it is impossible from a prenatal test to know what your child's issues would be - just like a child with typical chromosomes can have stressful medical conditions that don't show on any test, a child with DS might have very few.  That is a common reason people give in this situation and although I think its so wrong, I can at least understand where that person is coming from BUT here is what Samantha Brick proceeded to say that after that:

"I actually think it would be selfish to HAVE that baby because of the impact on the local health services, the cost of raising that child and the support it would need.' 
'My family and I have between us worked with hundreds of people with Downs Syndrome. Let's stop 'Disneyfying' this genetic condition and ensure families, and potential parents, can debate and discuss and have the full unbiased facts of exactly what they're getting into.'

That is what is the most frustrating thing about DS - there is no way I can convince that women or the hundreds of people who comment on how "they couldn't handle it" exactly how perfect my life is now.   I can tell them how amazing Cate is, I can blog about our normal life and I can advocate for Cate in public but I can't change minds of "those" people. 

Cate is the best thing that ever happened to me without question.  I love Lucy just as much as Cate - she is also my daughter and deserves every bit of love and attention I can give her but it is not the same for me.  Cate changed me in ways I cannot really describe appropriately.  She opened my eyes to the world, she opened my heart in amazing ways.  It is frustrating to not be able to touch people who still have their eyes closed to the gift disability can actually be to the people who chose to learn from it.  Because it is in so many ways it has taught me to appreciate life and determination in new ways, it has made me value differences, celebrate the smallest victories and to not put so much pressure on being "perfect". 

Is disability hard?  Is our life more difficult in some ways because of Cate?  Honestly, Yes.  But it isn't hard in the ways you think, yes it takes more planning, yes it takes money but you know that is true for a great many typical children as well.  Lucy is that perfect example.  She is dairy and egg allergic so we have to plan every meal, every snack she has in and outside our home.  We carry an epipen and emergency meds everywhere, if we go to a birthday party we take our own cupcake or ice cream.  Her milk & yogurt cost double or more what ours do.  Does that make our lives unbearable?  Of course not, it is our routine, something we hardly think about as outside the norm.  Cate's effect on our life is so similar, I drive her to therapy, I have constant contact with her teachers and a long roster of specialist but still Down Syndrome isn't that much a part of our everyday life.  Cate's personality on the other hand is a huge part of my life - the best part.  I couldn't "disneyfy" the positive effect she has had on me because there are not adjectives great enough to describe it. 

I know will have to live with the frustration that I just can't convince everyone no matter how hard I try.  It doesn't mean I'm going to stop trying because how could you not shout it from the mountain tops if you were blessed to see that smile everyday?


  1. I love the way you compared therapies to a food allergy because it's so true. EVERY child will have that "thing" that requires extra from us. This post is just so beautiful because I have lived every word, and I know exactly how right you are. The Samantha Brick story still just makes me so ill because it's not an isolated perspective. This is such a sad thing that so many people believe the lie that we are "Disneyfying" the "condition".

    BTW- Cate is gorgeous! I'm so glad that you shared your blog with me so that I could come see the legendary girl that I've heard so much about!

  2. I secretly hope "those" people go to a Mental Illness Island called It's A Small World and the song just plays over and over and over..........