“If ever there is tomorrow when we're not together.. there is something you must always remember. You are braver than you believe, stronger than you seem, and smarter than you think. But the most important thing is, even if we're apart.. I'll always be with you.”
~A.A. Milne, from "Winnie the Pooh"

Sunday, February 12, 2012

A Big Mistake

A few days ago, I made a mistake....
I followed a link to an article written by a father about his son with Down Syndrome. The mistake itself had nothing to do with the article itself (it was beautiful) but instead of reading the post and leaving, silly me had to read the comments.
And there lies the mistake. I know what I will find in the comments section. It rarely varies. Inevitably, if you find a public article about DS or about aborting babies with DS, you will find a whole lot of people who truly believe that our kids are "suffering", that DS is a crippling disease that needs to immediately be eradicated. There is continual commentary about the difficulties of raising a child with special needs, about the effects on marriages, sibling relationships, and financial repercussions. All from people who aren't raising a child with DS, and who despite a thousand arguments from those of us who actually ARE, would be the first in the abortion line if they were to have a positive result from the "new non-invasive blood test." 
The battle lines are clearly drawn and it's obvious that those with such strong opinions can not be swayed from them any more than we can our own, not even with words chosen carefully, calmly stated. I know this.
So why do I still feel as if, when faced with blatant ignorance and immovable, insurmountable misconceptions, I have to at least make an attempt to be the voice of reason with those who can't be reasoned with?

Its a path that leads to no where fast, as well as one that leaves me with a bad taste in my mouth and deep sadness in my heart.
We've come so far to stall here. Its disheartening to see so much misunderstanding, so much denial, so much discrimination, so much just plain fear. It all boils down to a great fear and distrust of anything different than the ideals we have in our minds.
But if I'm honest here, the only thing that separates me from the ever growing "them" is love. In the early days after the bomb dropped in our lives, stamped with the words "heart defect" and "Down Syndrome", the fear consumed me. Almost totally. The ONLY reason my daughter is now sleeping sweetly in my bed is because the love I already had for the tiny bean who would be my Lydia was already stronger than the fear.

Yes, my daughter has Down Syndrome. But while it might not be the trip that I had planned, it is better than even the carefully laid out tour of my dreams could have hoped to be. Each day brings more to soak up, a virtual feast of sights, smells, and sounds that file themselves quietly away inside my heart for remembrance during the storms that will inevitably return at some point in the future. The brightness of a smile, the twinkle in eyes as blue as the ocean, musical laughter ringing in my ears, the sweet, sticky smell of the curve of her neck and the warm, silkiness of the hair on the crown of her head.
Every one as much a miracle to me as the fact that the sun rises each morning or that the pull of the moon moves the tides. Each a daily reminder that sometimes life gives us so much more than we deserve.

I am honest to a fault sometimes. I've said it a thousand times already, and will probably say it at least a thousand more. I didn't ask for any of this. But sometimes, you just get lucky and God gives you what you need anyway.

I'm sure I didn't change any minds over on that board. And as sad as it could make me, it's not going to change the fact that I know something they don't. I know that my tiny girl is going to become someone amazing. She is beyond perfect in my eyes. I know that she is loved, she is coddled, she is well cared for, and she already knows that she can be who she is with us without reservation.
Those bitter, scared people are the ones missing out.........on all the love they could be giving.
And as for me, life is wonderful.


  1. i swear that last photo of you girls has more calories than a snickers bar. too. darn. sweet.

  2. Love that first picture!!

    I read that article too...And I always read the comments, I feel it's important for me to know what some think about people like Russell, I don't want to just hear all the good things people have to say...I want to know why all the ignorant people feel the way they do too.

    A year ago comments like that would have had me in tears...Not anymore. It stings a bit to read some of them...But the truth is like you said, all the people with the strong negative opinions are actually people who are NOT raising a child with Ds so how would they even know!
    That's what bothers me the most. People who do not know what they are talking about telling us our marriages suffer, or we are financially ruined, or our kids are a burden to their siblings...Blah...It's all just ridiculous!

    Anyway...Great post Heidi!

  3. love this post, heidi. who knows that you didn't change any minds, because I'd be willing to bet you at least got some started thinking. oxox


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