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When the special-needs boy turns into a man

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Some little girls dream about the day when they will walk down the aisle, into the arms of their very own Prince Charming. I have to honestly say I was not that little girl. And the funny thing is, my wedding day came fast!

I married one of my older brother’s dear friends — that is another story in itself — and it was a roller coaster ride. We married within six months of dating, and I was pregnant right away. There wasn’t even a chance to catch my breath.

My son Casey was born on Oct. 2, 1992. He weighed 8 pounds 2 ounces and seemed like a healthy baby. He came on his due date and everything seemed normal. I ended up having a C-section because the doctor felt he was just too big. Nothing out of the ordinary, I was told.

Casey began having issues right away. Feeding time was always a nightmare, and the poor kid only slept for about 18 hours a week. Yes, you read that right! Talk about sleep deprivation for the parents — but my husband and I could not believe that Casey could survive like this.

Long story short, everything came to fruition when Casey was 2 years old. The bottom line was that Casey had a ton of food allergies, was developmentally disabled, his fine and gross motor skills were off, and he was not growing.

The doctors used the term “failure to thrive.” We started feeding therapy, and he entered Early Childhood Prevention.

At 3 years old, Casey had to have a feeding tube. He would be hooked up to the intravenous for 12 hours a day, so he could get the nutrients he needed. The doctors figured this was the best solution while we worked on getting Casey to eat solid foods.

That is not why I decided to write this. I look at Casey every day, and I am amazed by him. I know parents say that about their kids, but I am baffled by and in awe of him.

When is a person lucky enough to get the chance to see someone’s true heart? And with all the turmoil that is going on in the world, I feel very fortunate.

Casey has had so much adversity in his life, and he never once batted his eyelashes. He never faltered or broke. My husband and I can count on one hand when he lost it — and rightfully so. There was never a “woe is me” attitude of any kind.

He was like a soldier and just conquered whatever came his way. Casey never took anything for granted and just tried to enjoy his life. His favorite saying to this day is “Don’t sweat the small stuff.” I think most of us need this mantra in our lives.

Raising a child and then sending him off into the world is a very scary place to be for a parent. But when you have a special-needs child, that spot is 10 times worse to be in. You worry about who will take care of him when you are gone. You hope and pray that the siblings will step in. I informed my younger son, Christian, that he needs to do that.

When Christian was 16 years old (he is now 22), he caught me crying one day. He asked why, and I told him I was worried about Casey’s future. He looked me directly in the eye and said, “Mom, I got this. Casey will never be alone. And if my wife doesn’t want Casey, then she is out.”

God love him.

I look at Casey now. Not the boy, but the 25-year-old man, and I see a man that is okay in his own skin, that knows right from wrong, that is respectful, and that loves hard and fiercely. He treats people like he wants to be treated.

I can now take a breath and let it out. There are no dreaded feelings whatsoever. Casey will be, and is, just fine.

I say to Casey and all the special-needs children and adults, “Carpe diem! You are perfect just the way you are.”

Kathy Chlan is the author of “Maternally Challenged: How My Special Needs Son Taught Me to Sack Up & Laugh” and the writer behind the popular website Unfiltered Mom. More at www.unfilteredmom.com.

Posted 12:00 am, May 10, 2018
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