If You Could Wave A Magic Wand And Change Your Child With Special Needs To “Normal,” Would You?

We are on vacation, traveling by car back from Brooklyn to Texas. We are in Memphis, at a hotel and this morning at breakfast, my husband asked, “If you could change Kai to ‘normal,’ would you do it?”

Kai is seven years old and has eight different diagnoses. He presents as low-functioning autistic. But he also has PVL (periventricular leukomalacia) and Duplicate Chromosome 16. And delays in all areas. And more. He is still in diapers. He is getting big at 4’4 and 65 pounds.

It seems like a crazy question. Who wouldn’t want that for their child? And yet…

Kai is amazing, just the way he is. He lights up a room. He creates joy in a space that lacked it only a moment before he walked in. He is my greatest student and my greatest teacher.

I would miss him if he were to change.

But…

One day, we won’t be here to care for him. And wouldn’t his life be better if he were able to care for himself then?

But still…

Kai has not a care in the world. His needs are simple. He only wants to be loved and cared for. He wants his tablet and a sippy cup full of milk. He wants cookies. He wants to be in water, to swim, to take baths. He doesn’t care if he is invited to birthday parties and has no inkling of whether or not others are looking at him in public. He is so HAPPY. Pretty much every day. And that is a good life, better than a lot of lives of people that are intellectually more aware.

The truth is that having known Kai and being introduced to the most surprising, amazing journey of my life has changed me. I would miss who he is now tremendously. I don’t know if I could do it. Wave a magic wand and have Kai be… well, who? Not himself?

To me, it is unthinkable. And I am so surprised by that.

But I think that I would have to do it. Because one day I won’t be here. One day my husband won’t be here. And although I can put the necessary things in place to make sure as best as I can that he will be cared for, it won’t be me or my husband that cares for him for the second part of his life. And although Kai’s siblings are amazing and great with him, it is a tremendous responsibility. That they have accepting it gracefully, even though they never asked for it, warms my heart every single day.

I’d have to do it. So that Kai could care for himself when we are gone.

The thought makes me want to cry.

Because I have realized that, to me, he is perfect. I want exactly my Kai.

This is the one time I am grateful that I am absolutely useless at performing magic.

Would you wave a magic wand and make your child with special needs typical? Please share in the comments below.

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