I am the mother of a 13 year old boy, Alex, with Down Syndrome. Raising a child with special needs is both challenging and rewarding, but unless you have experienced it first hand, it is hard to fathom the minute by minute, hour by hour and day by day situations that arise. Some of the stories I have shared with people have brought tears of laughter as well as sorrow, so I decided to share parts of my journey, maybe to enlighten, maybe as a little bit of self therapy. Hope you enjoy!
Tuesday, November 3, 2009
This past Sunday we had a big neighborhood game of capture the flag. It was fun to see the kids running around on a crisp fall day, and especially to see Alex included in the fun. He had the job of defense, and they told him to blow his whistle any time a member of the other team came into the backyard. Let me tell you, he blew that whistle like his ship was going down - nonstop the whole game. At one point I had to tell him to come up for air, I seriously thought he was going to hyperventilate! It's always bittersweet for me though, on one hand I get to be with my kids, interacting with them and seeing them interact with friends, seeing Alex having fun and feeling a part of things is always good. But knowing the other moms are inside keeping busy, getting things done while occasionally checking out the window to see if the kids are ok, the normalcy of that ,which I will probably never have stings a bit. I know it frustrates Alex too, he actually tells me to stop following him around, to let him be with his friends, "the other kids will watch me mom, I'm fine, I'll be good." If only I could know that for sure - it is in his heart but is it in his control?
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