Tuesday, March 22, 2011

Honestly crazy

I feel a little out of place in the Down syndrome community and I have been struggling with that lately. No one knows Fiona has DS. Excuse me, let me rephrase- no one looks at my daughter and thinks " She has Down syndrome". I find my self in a limbo, that I poured my soul into loving this community but we don't look like we fit in. Kinda ironic, that I am sad my daughter doesn't look different enough to fit in.

I have mentioned before my original pain of her diagnosis was a shallow one. I didn't want her to look different. The heart and feet could be fixed, but there is no fixing the look of Down syndrome. So when they held Fiona for me to kiss her soft, fresh cheek for the first time and she looked "normal", I was surprised to find myself desperately searching for almond eyes. (which she does have, though they are not that predominate) And as day after day, I have to repeat, " I know she doesn't look like she has Down syndrome, she has a rare form of it where not every one of her cells acquired the extra chromosome" I feel like people think I am crazy. Why am I such a big advocate for Down syndrome when my daughter seems "normal"? And who am I to be encouraging people to keep their baby because not everyone's story turns out as positive as ours. There is a very wide range of how Down syndrome effects a person, ranging from highly functioning to severely mentally handicap. We seem to have fallen barely even on the line, holding onto the very tip of highly functioning and even hanging half on the normal spectrum. And I often say how much of a blessing this is, but we are just blessed to have Fiona in our life, and I would feel that way even if she fell somewhere further down that spectrum. I see DS in my daughter because I look for it. But to the common onlooker, she is just a normal cooing, laughing, sitting, rolling, big blue eyed 7 month old. And wasn't it always my prayer that that is how she would be viewed? So why do I feel a little sad that people don't look at her and know she is special. If it weren't for strangers prying so much, "O, she is soo tiny for a 7 month old!" which I feel the need to defend her by informing them, " She was born with a heart defect that she recently had surgery for" which then is followed by all the pity and questions and the easiest way to explain why she had a heart defect is just to say, " she has Down syndrome". Que the, "Oh? She doesn't look it at all? Are you sure?". Am I crazy to feel out of place with a daughter who is typical, just not for her label?

I hated the attention the twins brought me. I do not like being in the lime light. I love writing here because I feel comfortable talking to a computer screen, but I used to pray strangers didn't talk to me in the grocery line. And I remember thinking, when learning that Fiona did have Down syndrome, crap, strangers are going to see shes different and  feel the need to talk to me  like they did with the twins. " Are they twins?" "Is it a boy and a girl" (Um, no they are both in blue) " You have your hands full!". I am shy by nature. But I have come to the realization in the last year that maybe one of the reasons God gave me high risk pregnancies and children that draw extra attention was to push me out of my comfort zone. I have learned that really opening up to people is freeing. That making eye contact with people makes me smile more in a day. And when person after person would peek around the stroller and see my beautiful girl for just that, I found my self sad she wasn't more of a conversation starter. A few would notice how small she was for her age and, now that she has casts, we get all kinds of inquirers. My favorite are the people who gasp and ask what horrific accident she went through at such a young age that broke both of her legs, as she is happily kicking her casted legs against the stroller. But no one, not one person has ever looked at her and questioned if she was different. Not one look of surprise- they saw exactly what they expected to see when they look in the stroller, a normal baby.

 I've wrestled with my odd reaction over and over- I am trying to label my daughter. I want her to fit in somewhere. I want to fit in somewhere. But she doesn't fall into any label, she is just Fiona. Excuse me, let me rephrase, she is the amazing, unique, strong, beautiful, perfect Fiona. Whether she looks it or not, Down syndrome is part of her uniqueness. And its a piece of the puzzle that makes up this family. I want people to know her for her and not as "the girl with Down syndrome", but she is doing a better job then me in proving her awesomeness- I am still getting stuck on her little diagnosis. I have fallen head over heals with this special almond eye community. And I will continue to be an advocate for them, even if we may not be a typical example of what life with Downs is like. And I will continue to encourage expectant parents to take the road less traveled and embrace the gift- the blessing- begging them to accept them into their family because everyone has potential. Some more then others, but no testing can tell you how amazing your child will definitively be. And your puzzle will never be completed if you throw away one of the puzzle pieces.

My shallowness sometimes scares me. As a Mosaic Down, we do not know which cells carry 47 chromosomes and which don't. We know things such as her heart and her feet where affected by Down syndrome, and that her facial features were not as much. But the way she looks is no where near as important as her health. Cognitively and health wise, we could be dealing with a more severe place on the spectrum. I would rather my daughter have a healthy heart then to look like a normal child and I am ashamed by my initial ignorance.

With the fundraiser and World Down Syndrome Day, I am sure I have Down syndromed everyone out. I am trying to drop this label I have unintentionally given my daughter and working on not trying to make her fit into any one box. It might ocassionally come up, as we celebrate a hurdle jumped or are working on picking a knocked over hurdle back up for another try, but I think its time to start concentrating on other pieces of our puzzle. Starting with the mom-verse kids food battle.


  1. Shannon, I know EXACTLY what you mean...When Piper first had her stroke, she was so sick, and the outside world was oblivious. She LOOKED just like any other baby, but there was a battle going on inside. It was hard for me NOT to point it out. What Fiona overcomes, makes her even MORE special than she already is (is that even possible?) but the gift of her life, must be fully shared to be appreciated. How ironic, that her beauty, could cause turmoil? I felt the same way when Piper was better. We are traveling this road together, and I am so glad that I don't have to go it alone anymore.

  2. what a great post. Fiona is just beautiful. Thanks for stopping by my blog...I plan to return to yours too


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