Honored, Privileged, Blessed to be the Parent of a Special Needs Child

January 17, 2011

This weekend, Michele and I were truly honored to be asked to speak to a group of 5th and 6th graders about our experience as a family raising Katy. One of Michele’s clients had done an interview with us last summer and knew the story of Katy’s chromosome deletion. She asked us to tell the kids about acceptance and how Katy has helped changed everyone in our family.

I really had no idea what to expect; but I didn’t want to let my little girl down. I prepared a presentation complete with some of the videos you’ve seen on this site, and loaded it onto Michele’s iPad ¬†thinking there’d probably only be 10-15 kids, tops. Oops. I was speaking to 70 kids.

I may not have had the size screen I needed, but I truly wanted to include video for this presentation. Katy is one of the most loving kids around – once she feels comfortable with someone. In a setting like we were going to be – even if it was only 10-15 kids – I knew she would be shy, worried even. And she was; but thankfully not for long.

So, I told these 70 kids and 10 or so adults our story. I told them (as best I could) about Katy’s chromosome deletion. I explained that chromosomes are like instructions for your body. And when part of chromosome goes missing, the body doesn’t have it’s full sheet of instructions anymore.

I told them about Katy’s issues. That she can’t walk (yet). And she can’t talk (yet). And that she’s had five surgeries already in her five and a half years on this earth. And I said (as if I was Katy), “So if I can’t walk.. and I can’t talk… I must lead a pretty boring life right? WRONG!”

And then I showed them pictures and video of Katy horse back riding, of Katy being pushed onto the field during starting line-ups at the Lindenwood Women’s Soccer Game, of Katy swimming, of Katy playing the piano, and of Katy with a mouth full of whip cream laughing her laugh.

I tried to show them that Katy was just a kid like all of them – once you got to know them. After I was done (I think I talked for about 40 minutes), I was expecting to get one or two questions from a couple of girls that thought Katy was cute. Imagine my shock when we were asked good, insightful question after question by boys, girls, parents, everyone. What made it so special for me was it told me they were interested in my little girl.

One of the older boys asked the toughest question of all: “If you were told tomorrow that doctors could cure Katy, would we do it?” I told him I couldn’t answer that. I want the best for Katy. That never changes. But answering “yes” to that question somehow seems like I’m admitting that I want my little girl to be different than she is, that I can’t accept her for who she is right now. I don’t know if that will make any sense to anybody out there.

All I know is that on the way home after our hour of time became closer to two, Maggie and Bryan talked about how different they would probably be if it wasn’t for Katy. They already believe they are better people because of her. ¬†I truly believe I would not have started writing again if it wasn’t for this. Every day, I watch my little girl work so hard to do things that your average, every day kid just “knows” how to do. I watch her study other kids’ feet as if she’s trying to figure out just how they’ve all made them work. I watch her study her teachers’ faces as she tries to put out the same sounds from her mouth. I watch her oldest brothers taking her out to the trampoline or rolling a ball with her. I watch her face light up when they walk in the room.

And I pick her up every morning and put her down to bed every night knowing I couldn’t feel more blessed with my family than I already am.

Our thanks to Sharon Vermont and the Congregation Shaare Emeth for inviting us into your community. This was a very special day for us. I hope the kids got as much out of it as we did.

{ 4 comments… read them below or add one }

mary gilsinn January 18, 2011 at 10:59 am

Thanks so much for sharing Katy’s story with us. We are so proud of your family-making the very best out of a challenging situation. Katy’s is one of God’s angels, put on this earth to teach all of us important lessons. Love, Mary

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Todd January 18, 2011 at 10:02 pm

Mary- I finally got you correctly signed up for the e-mails! Thanks for your kind words and thanks for all your cookies and love over the years!

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Sara Ladd January 18, 2011 at 2:26 pm

Thanks for sharing this with us!! I especially like how you responded to the question about whether or not you would “cure” Katy. You asked if your response made sense and it absolutely does. I find myself thinking that exact same thing. Parker is young but I already see how he has affected us all in a positive way and I look forward to looking back when he gets older and realizing in how many ways we have been blessed just as you are doing. Thanks again!

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Todd January 18, 2011 at 10:39 pm

Sara- I’m glad at least one person understood what I was trying to say there. It truly is a difficult topic to discuss, though, especially when you consider we just went to Mayo in October to find “answers.” But I also think that trip – and it’s lack of answers – made me realize that I needed to start truly loving Katy for who she is and ease up a bit on everything else.

I want Katy to be happy, healthy and safe. As long as we can start there, we’re doing okay.

todd

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