Monday, November 21, 2011

Thinking on the bright side

I wrote the words, "my daughter is disabled" and my brain felt like it was going to explode. As true as that statement is, it also is so incredibly false. The fact that she is not crawling or walking or standing proves it. But yet the fact that she dips her spoon into her yogurt and brings to to her mouth, that she can get her self (somehow) to the toy across the room, and that she points to the baby in the book, proves it wrong. Her therapists called her the miracle baby. She is right on track in so many areas in development even after heart defect, surgery and clubbed feet- let a lone having an extra chromosome. She truly amazes me... until she is sitting next to a baby her age. And then the "disability" becomes so crystal clear. A night and day.

Its funny. Its like someone puts glasses on me that block out anything positive when Fiona is next to another one year old. Sit her in my lap and I can see so many similarities in my one year old and that one year old. Put them right next to each other, and all I see is how small, and wobbly and delayed Fiona is. Its hard to explain how this makes me feel. I tried, today, when her therapist asked me if its painful. Some times, less and less now that she is getting older and I am getting stronger, but some times yes, its painful. Most of the time, it just sucks. And I am not sure exactly why. Maybe its the rat race our society has on child developement. The mommy-wars of my-kid-did-this-first or that intelligence, importance, stems from being ahead of the game. A lot of it is just that I want her to be accepted.

I see us parents of special needs kids being contradictory sometimes. Sometimes, nothing you (person not directly related to someone with special needs) say will be the right thing. If you compliment my kid, I feel like you are putting low expectations on her. That she is "happy" or "alert" or "so strong" as if you expected her not to be. Or if you don't notice her accomplishments that you don't expect too much from her. That you think its a shame she is not walking or talking. I want to educate people not to offend, because most of the hurtful things come from people with good intentions. The people who are out to hurt Fiona and belittle her are really far and few. But sometimes I forget that I am a mother to a special needs child and you are not. That our life is different and sometimes things are just going to suck. No one is really saying anything wrong, its just going to be hard sometimes to live in our reality.

I want to be an encouragement to people, that life with a special needs child, life with a child with Down syndrome, is not a death sentence. It is not a tragedy. Losing a baby, which I am watching a friend go through right now, is a tragedy. My heart breaks for her, as she is going through unimaginable pain. Losing a life is tragic, but life is always a blessing. I have proof. Read Tripp's story. I promise, you will cry. Its very very hard to see and think about this child's life. I think of him often. My son suffers from eczema, and sometimes when I am up with him in the middle of the night cleaning his blood off his scrapped skin and applying his oil, I think about Tripp. Some people would say his life is a tragedy. I have even thought so my self. But then I watch the videos Courtney posts, and I read her talking about spending time with him. His smile. His laugh. There is a lot of tears and pain, but there is also joy and laughter. He has a personality. He has opinions. He has the joy of a toddler- but the suffering of a prisoner.

There are a lot of hard things when your child is different. When you have to watch your child go through surgery or pain or abuse or judgement that most kids don't have to endure. But it doesn't always consume you. The joy is abundant- not in a way that outsiders can understand- but it is abundant.

Thankful posts are kinda my thing, and of course I will do one for Thanksgiving. But my friend Patti is doing a beautiful one that she is posting tomorrow (Tues, Nov 21). Even in the midst of different and difficult, you do not have to look far to find your blessings. You just have to look.

Sneak peak from our family pictures- photography by Ashley Allbee


  1. Beautifully are so right too...the blessings are there when you just simply look. Interestingly enough though, the blessings become easier for me to see as Kristen grows older even though the delays are more apparent. God's hand at work, for sure. Enjoy your blessings today!

  2. So many things in this post I loved.

    I never notice the delays in Russell until he is beside another child his age too. Because he just seems so perfectly normal, so perfectly Russell.
    And it does sting a little when comparing. I'm getting better at not letting it bother me though. I see Russell work so damn hard for everything that mostly all I feel now is pride, no matter how much or how little he is doing compared to other kids.

    I love the pictures of Fiona on here...That last one is really beautiful!

  3. the comparing is so very difficult. Comparing our kiddos to typical kids is hard enough - but I recently joined a reading program w my guy and other kiidos w Ds...and the comparing of my kiddo w Ds and other kiddos w Ds is extremely painful in a wierd way! I like to build a little bubble and stay put! Beautiful words...we are not alone.

  4. We feel pain because we love our children so much. We just want the best for them. It's not painful in a selfish way, I don't think. But yes I compare too, with all my children, it's impossible not to.

  5. It is hard for any mother not to compare her children with others...

    Sending lots of love your way!


  6. Sometimes I compare too. Baby C had bacterial spinal meningitis at 3 weeks old. The doctors said she may be behind and loss her hearing. God proved them wrong. She is now on track with perfect hearing. But I still compare.


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