In honor of World Down Syndrome Day on 3-21 this entry is directed to any expecting parents who have received news that their unborn child has Down syndrome and who may now feel they are faced with a decision.
Dear Expecting Parent,
First, congratulations on your conception and the beautiful child you now carry. I want to assure you, as someone who has been in your shoes, you still have much to celebrate.
Your OB had suspicions and probably referred you to a perinatologist to receive a positive diagnosis of Down syndrome. Perhaps that doctor has advised that you terminate, or perhaps you were lucky like me, and you found a perinatologist who treated your unborn child like an individual with individual needs. But either way, you have received news that you carry an imperfect child and you fear that imperfect child won't satisfy the vision you had for your family.
Your heart is broken.
So was mine.
We all want the absolute best for our children, and society tells us Down syndrome is a bad, bad condition. I believed it, but since I knew I was keeping my child (termination has never been an option for me) I started educating myself. Be assured, I'm not writing this to judge. I'm writing this to inspire you to educate yourself.
Let me tell you about Clara Sue, though my words cannot possibly describe to you the immense beauty she possesses and the overwhelming love I have for her.
She is imperfect--just like my other children before her. Sometimes she cries and I can't figure out exactly what it is that she wants. We go back and forth, from my arms, to her bottle, to her binky, to her crib, until finally, she is satisfied with one or the other that she had been previously offered, but now suddenly she decides it's good enough. She wakes me up in the middle of the night when all I want to do is sleep. And she constantly breaks my heart just by being so bad it makes her darned cute!
But all babies do those things. And even when it seems like they're being bad, all babies are good. They do cute things that bring tears to your eyes and make you realize how fortunate you are to be their parent. Clara does that, too.
But then there are the specifically Clara things. She has soft, gorgeous dark hair framing her petite face that glows like an angel when she is peacefully asleep. When she starts nursing she clenches her fists as if she can't control her excitement at being at my breast--finally! When I nurse her at night in bed, she finishes and puts her arm on me, as if she is hugging me; she loves to be close and I've decided she is the world's best snuggler. When I undress her for her bath and hold her up to place her in the tub her legs spread as if she is coming in for a landing. This always makes me laugh. When she is calm and I hold her to watch her face she will make eye contact with me and hold that gaze, and I see so much there. I see a future for her and for us worth living, and I see this child will be the love of my life.
Clara is an individual with an extra chromosome. She has 47. But she still has feelings, she still does all the things that other babies do and then some, and she already gives a lot of love and wants to be loved in return. Just like her siblings before her who each have 46 chromosomes, I don't know what the future holds for her. Only time will tell.
The only thing I know for certain is that she's my daughter and I'm thankful every day that she is here.
Your imperfect child may not satisfy your vision of your perfect family, but I have news for you: neither will any other child. I have two who are grown and almost grown and they are not who I wanted them to be, but I love them just the same. Turns out they get to decide who they will be. Who knew?!
I can't tell you what problems your unborn child may face, if any. I can only tell you that Clara appears to be a healthy and thriving little girl with a lot of personality and her momma's heart in the palm of her tiny hand. All children are different, no matter what labels they may carry. Read stories from other parents; join groups. Educate yourself before he/she gets here so you are prepared for any health issues should they be present.
There are free resources all around you, including within your state. My daughter is already receiving free aid from the state in the form of bi-weekly visits from a therapist (called early intervention). Their goal is to help make Clara "all that she can be."
I look at Clara and I don't see any reason why the right to be here should ever have been taken from her. I look at Clara and I cry for other children who don't get the chance that she has simply because someone found an extra chromosome. It doesn't seem fair, especially when there is absolutely nothing wrong with who these children are, and that is that they are children.
Your heart is broken but soon it will be full.
Mine is.
There is so much to celebrate.
Love Kel
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