Roots of Struggle

Is it possible to love someone too much? If so, then I love him too much. I love him and love ON him too much.
And once I learned of his diagnosis (diagnosES, I should say), I loved him all the more. I know it’s probably not something you should do–or should you?–love a child a little more once you hear that they will likely have medical issues and struggles throughout their life.

But I do.

I know I take more moments to pause and look at him – really look at him – and take him in. I battle myself constantly with wanting to baby him more than I should (is that not a given? Would I not have done this even so?).

But I can’t. 

I can’t baby him the way I might have chosen. Babying him because of a left hand that doesn’t cooperate, or constantly reminding him of the order and fashion in which to brush his teeth, every. single. day and night, does not serve him long term. Allowing him to constantly stay within the safe and comfortable confines of his home to carry out repetitive tasks and rituals, does not serve him. Allowing him to self isolate, is not an option. 

For almost 4, he’s sharp, witty and has a memory like an elephant despite needing guidance in motor planning. His recent and new found imagination is something to stop you in your tracks. It’s a guarantee he will hear and spot a speck of an airplane miles and miles in the sky, long before you EVER do. 

He’s sensitive. 

His mind and body interpret sensations much differently than you and I. Warm water to us, is hot to him, and can cause him to scream in agony. Not only the temperature, the actual feel of the water rippling and rolling along his little frame, is sometimes enough to send him over the edge. Combing his hair hurts tremendously. Seams on his socks, tags in his shirts, a collar that touches his neck in a not-so-right way, are constant sources of struggle. 

I wasn’t sure what this Halloween would bring, as the confines of a costume are becoming a bit too much for him. He finally decided he wanted to be a “skeleton ghost” and I breathed a huge sigh of relief – because PJs!!! No tags, comfortable seams and collar. It’s a Halloween miracle.


But face paint.

He wanted his face white and so we worked for several months to build him up to tolerating the feeling on his skin, starting first with a few swatches on his hands. He hated it. And yet we were both determined. Perhaps me a little moreso…but

He’s determined. 

I don’t let him give in to the struggle. Struggle is not an excuse to quit or to stop. Ever. Struggle is the reason to press harder, believe more, trust more. 
While I don’t like to think about it (no parent does) I won’t always be here. It weighs more heavily on parents of children with disabilities and so, I let him struggle more than I don’t. For if in doing so, his strength becomes more deeply rooted, he (nor I) will not have reason to one day fear the winds. 
Because I love him too much…

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