Saturday, October 3, 2015

Day 2, A Day Late

#31for21 #DownSyndromeAwarenessMonth #October

So it is Day 3 of DSA month and I am already late writing my 2nd post just now. But I do have a good reason and it lends to my 2nd topic.

Yesterday I participated in a Zumba-thon to raise money and awareness for Breast Cancer Awareness. October is also Breast Cancer Awareness month, and pretty much everyone knows that. My grandmother and aunt passed away from breast cancer, so it is an important cause for me as well. We did 2 hours straight of Zumba and it was AMAZING! We had a pretty good turn out and an extra instructor that alternated with our instructor. I made the entire 2 hours without stopping. My toes started going a little numb towards the end, but whatever.

I had to arrive early because I offered our bouncy house and 10ft infaltable slide/pool thing so the kids would have something to do in those 2 hours, and we had to set it up. And then we were there until about 930 taking it all down. THAT was a pain. The slide/pool was still wet but we crammed it into the back of the minivan with much grunting and cursing. It's still there, hopefully not mildewing.

Here is the great group of ladies that was there last night




Which brings me to not letting Down syndrome define or dominate your life or your child's life. As parents we continuously say that the DS does not define our kids, and it doesnt. But it is a big part of our lives, in the sense of IEPs, therapies, doctor and specialist appointments, advocating and educating, in the beginning. In the beginning I ate, drank and slept DS. I was on a one mommy mission to make sure that he would reach milestones in the same time frame as his typical peers. I knew if I worked with him enough we could outrun or outsmart the DS. Thankfully it didnt take long for me to realize what I was doing was turning my baby into a project and I was missing out on him being a baby. I was letting Down syndrome define both he and I. Down syndrome is not something you can outrun or outsmart or give 500 supplements for to diminish or eradicate whichever parts of the body it chooses to affect, anymore than wearing colored contacts will permanently change your eye color. That is because DS is part of your genetic makeup, just like your eye or hair color. You can do things to cover up and change the color of those, but in the end, they are still really that color when you take out the lenses or your hair grows out. Once I realized that and started just enjoying him as a baby, my first baby, life became a whole lot sweeter. I didnt spend 5 hours a day trying to make him balance on a toy to sit up, instead I played with him with that toy. He would learn to sit up when he would learn. I could help facilitate that doing certain things with him but still play with him or interact with him as a mother and a baby. Soon it became second nature to position him this way or that without a thought, like learning how to Zumba. You do it enough it becomes automatic and you dont think about it. Slowly over time as the dr appointments lessened, milestones were being met, you dont see down syndrome every time you look at your child. You see your beautiful child. The one that looks just like his daddy. The fabulous little boy with blonde hair and blue eyes and a wicked grin. 

You still think of down syndrome here and there, but not the way you used too. It is just a part of your life. Yes, many of our friends are families with DS. Yes, we do lots of activities, etc with them. But I think most families hang out and do things together that have things in common, like soccer moms, tball moms, boy scout moms, etc. But we have friends that are typical families as well; we do have 2 typical children as well. But we are just a family with 4 kids. So after the realization that I didnt have to live every waking moment talking about DS, thinking about DS I began to live my life again. Of course things would be different with or without the DS, just becoming a mommy changes the things you do; activities, friends, etc...

And my boys certainly do not let DS define them. They are too worried about if the movie Im about to turn on is Toy Story, if the reason I went into the backyard was to set up the water slide or bounce house, Oh can I have the Kindle/iphone?, if I lay here on the stairs long enough Mom will forget about me and I wont have to take a bath tonight, if I hide behind this couch cushion she cant see me and I wont have to get dressed. Those all sound pretty typical to me for kids their age. If they dont let their DS define them, then neither should I, or anyone else for that matter. Every thing they do or can not do is not because they have DS. Every illness or quirk or personality trait is not because of their DS(although trying to get some Drs to see past that is pretty difficult). 

So yes, I went to my Zumba-thon last night to support another cause *gasp* (I know) and to participate in my number 1 favorite activity and to hang out with my friends. And you know what, not once did I think about Down syndrome.  That is until I got home after 11pm and realized I had not written this post!

So please, if you are a woman, go get your bewbs squished this month. I know Im looking forward to it!





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