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What You Can't See Behind My Child's Invisible Illness

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Invisible illness can feel like both a blessing and curse. As much as I’m glad that my son gets to blend in and no one is the wiser, there are days where I wish they knew and with that, understood.

I wish the weird looks and stares weren’t present. That the fatigue and inability to function didn’t exist. That the feeling of having to justify myself or my child due to their actions wasn’t needed. That the fear of “what’s next” wasn’t ever present. That the compassion and understanding were there.

My child is a typical, as regular as can be 6-and-a-half-year old boy. He loves basketball, board games, being wacky and making messes. He can tell you funny jokes and random facts about most animals, and can be the sweetest human alive. And at 6 he has more confidence than anyone I know. (Sometimes he has a bit too much). Most importantly, he looks perfectly healthy, until he is not.

What invisible illness does not show is his extraordinarily rare, chronic diseases (what can we say, he likes to keeps us on our toes). It doesn’t show the multiple hospitalizations he has endured, the surgeries, therapies, the tests and procedures, the many, oh so many doctors’ appointments.

It doesn’t show his bad days or nights to the outside world. The days where he is too tired to go to school or even open his eyes. The high fevers that spike, the legs that hurt, the excruciating stomach and head pain that come with his disease.

It doesn’t reveal the activities he has missed, play dates he’s been too sick to attend, and things he couldn’t be a part of.  It doesn’t show the injections he takes, the pills he swallows, the ice he holds. It doesn’t show his fears, or tears, or amazing achievements.
This is the life he knows. And this life is mostly concealed from you.

As much as he might not be at his best all the time, this is his norm. So he brushes it off and goes on with his day, pushes through as much he can until he collapses.

He doesn’t want to be different. He just wants to play.

His friends are none the wiser because they just accept him for who he is. He doesn’t view himself as sick because he is not — he is himself.

But inwardly, as his mother, there are days I struggle with the weight of it all.

I struggle with wanting to know whether we are making the right decisions for him. Whether we should be more open about it so mothers (more than their kids) can be more understanding and supportive. So people can help if needed or just say “you got this.”

There are days when the reality sets in and it is not easy, the future so unknown.

And though logically no future is known, sometimes I allow myself to recognize that we are allowed to at times be vulnerable.

Sometimes we are scared and tired, and want to be done, but for the most part we are just proud.

I cry at his achievements. I cry when he does something we didn’t think he could. We relish the small things.

And most of all, despite the unknown and all that is invisible, and all the illness, we choose to celebrate.

Originally published: August 8, 2019
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