• Mon, Feb 11 2013

My Special Needs Child Lost His Best Friend

Vater SyndromeWe practice most things we do in our lives. Things like driving and cooking, the skill set we use at work and raising our children are all things that take practice. It’s hard, repetitive practice every day until we are satisfied, or not, with the results.

But how do you practice telling your child when their best friend dies? How do you tell him that her heart was bad and nobody could fix it? There is no practice for that. No manual, rule book or DVD that explains how to do it.  All you can do is glean the information from those unfortunate ones who have had to experience this before.

Of course this process is made even harder when you’re dealing with special needs kids on both sides of the equation.  What’s normal to us can be far from normal to them. Emotions can range from uncontrolled hysterics to almost non-existent. I almost pray that it quickly turns to hysterics. I have dealt with hysterics. It’s the silence which drives you mad. And still does drive me mad.

Two 11-year-olds, Blake and Alyssa, were bound by their disabilities as much as their personalities. These two kids spent almost every minute of every school day together, and have spent every school day together since they began school.  Still it makes me wonder if kids that age take things for granted. I wonder if they count on each other as a safety net like they would count on the bus being there every day or the nurse always having that band aid for a scraped up knee.

Blake was born with Vater Syndrome. It is essentially an anagram for many different conditions and is also known as Vacteral Syndrome. Blake also suffered nerve damage to his diaphragm and got an infection during surgery which turned into viral encephalitis. Many other things happened during the months at Comer Children’s Hospital. Enough to prompt Blake’s attending physician to say it was like getting struck by lightning three times.

Alyssa was born with one-half of a heart. (I believe it is called Hypoplastic Right Heart Syndrome). She had routine surgeries to dilate her arteries. This past June she had the surgery the day we were taking Blake for the Summer Games of the Special Olympics. We got a call that evening that she had an aneurysm and passed away.

So my son’s life changed drastically. He wondered when he would see her again, and if it would be in Heaven when he saw her. He doesn’t enjoy school like he once did and the only thing I know to do is love him even more.  The hours of the days he spent with her will now be a shell of what they once were.  No more walking down the hall together, no more giggling during speech therapy when one of them goofs up.  Recess and lunch and the normal part of the day won’t change much.  It’s the special time of the day when it was the two of them that’ll change.  And it has changed forever.

His therapist said it is something he will learn to deal with over time. I’m just an agronomist and I could have told you that. He misses his friend every day. Sometimes he will tell us, sometimes we just know. And all I can do is give him a bear hug and hope it makes things better, if only for a little while.

Blake will carry on like he does, saying “please” and “thank you,” cleaning up after himself and asking Santa to “fix his dad’s back so it doesn’t hurt anymore”. That’s just the kind of kid he is. But there will be a darkness that comes and goes and that’s my job to take care of. I’ll do it the best way I know how by walking him through the darkness, whenever he needs it.

It’s not about the quantity of life you’ve lived but the quality of it.

And as I told Blake, “You worry about having fun. I’ll worry about everything else.”

This is a reader submission. 

(photo: Gordon Warlow / Shutterstock)

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  • http://www.xojane.com/author/eve Eve Vawter

    Heartbreaking, thank you for sharing

  • Blueathena623

    I’m so sorry. You have my sincere condolences.

  • Flying fingers

    I had the pleasure and privilege of teaching both of these children. I can tell you that they were and are remarkable children! I still miss Alyssa and I still don’t understand why she was taken to heaven on that day. Through my tears today I thank Scott for sharing this story.

  • LiteBrite

    I’m so sorry too. Thank you for sharing this.

  • meg

    I am so, so sorry for your child’s – and indeed, your – loss. Thank you for sharing your tragic, confusing experience so thoughtfully.

  • C.J.

    So very sorry for your son’s loss. My daughter’s just lost a close friend to a car accident. She was 9 years old. It is hard to explain something to children that we as adults don’t understand. I imagine it is even harder to explain with a special needs child. Thank you for sharing your story.

    • ScottA

      I hope all goes as well as it can under the circumstances. Every day I remind him to have fun and let me worry about everything else. And to stay happy when he thinks about her.

    • C.J.

      Thank you Scott.