Thursday, October 6, 2011

Just a Part

Down syndrome. It flows off my tongue now with no hesitation or pain. Down syndrome. Just as easily said as blond. My daughter has blond hair. Beautiful strawberry blond hair. And my daughter has Down syndrome.

The first time I said those words, my daughter has Down syndrome, it felt like toxin. This horrible poison that I turned my head away from accepting a drink. I didn't want it to be true. It was an unknown. Something I knew very little about other then it was different, and it was going to make life harder. 

Life is different. I have three kids now instead of two, and juggling that is harder then I imagined. I spend more time educating myself and investing time in people then reading gossip magazines. I care about fundraisers and feel deeper for those going through hard times. I am comfortable in a hospital. I clean my house for therapists, and buy toys that help with development, not just light up and make cool noises. Life is different. I am more aware. I am nicer to the random stranger. I snuggle longer with my kids. Life is harder. I worry more about the what ifs because I am aware of them. I get very stressed with having twin 3 year olds who demand so much from me while the baby is screaming from teething pain. Its not Down syndrome that made my life different and harder, life is just hard. Honestly, in this season of my life, its the crazy twins that are testing me. 

I wish that no one had to be made different. That no one had to be teased, and looked down on simply because how they were made. But this diverse world we live in functions with the diverse people who live in it. We learn from each other, as each one has their own thing to bring to the table. Studies show that inclusion of special needs kids in normal classes rooms is just as beneficial for the typically developing kids as it is for those with special needs. It always seems that those who have to endure a challenge have the most to offer. Why do bad things happen to good people? Truly picture a world with no pain or suffering. There would be no need for hope, no need for compassion, no need for selflessness, no need for heroic gestures. Its that whole this-is-a-much-bigger-picture-then-just-us thing. Its not what this life gives you, but what you make with the life given to you. 


  1. She is just soooo adorable! Too funny that your biggest issues are with the twins. I wish people on the outside knew that life with a child with Down syndrome is just life with a child. Period. Well, with some added bits and pieces. :-) I think it's made me much smarter, and like you said, much more *aware.* Heck, apparently parents of typical children don't have to learn each and every part of the process to teach your child to walk or talk, but we sure do!

  2. It is amazing how quickly our entire outlook can change. I didn't realize how challenging the jump from 2 to 3 would be! Right now, it is my middle child that is the most challenging (not my child with DS)!

  3. Well said. Couldn't agree with you more. Such an amazing mama you are! We're dealing with a lot over here due to the prematurity of the twins...lots of appointments, physical therapy etc and my 3 year old is definitely demanding...but it's so is hard no matter what and I wouldn't trade it for the world.


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