Without a Crystal Ball

Our Journey through Chronic Illness & Autism

 

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I know you don’t understand why we’re working so hard to keep our child safe. I know you shake your head and snicker when we ask you if anyone has a cough, cold or stomachache. Trust me, I know you think I’m being overprotective, and I’ve even heard you call me a “helicopter” parent. Even when you think I can’t hear you or see your looks, I do see it all, and I want you to know there are reasons why we do what we do.

The hardest feedback you ever gave me was, “You are just an overprotective parent who had a child almost die. You just feel guilty he almost died, and you think keeping him home will prevent him from dying. But by doing that, you are doing a disservice to him and harming his development.” I remember those words in their entirety because I wish what was said was actually the truth. However, there really isn’t any guilt in what I do, and there are times I wish it were easy as feeling guilty or simply feeling scared.

Unfortunately, the life we lead isn’t about guilt or fear but rather a very real reality — a cold, virus or stomach virus could kill our son. We know it’s just a cold to you, but to my son, it’s never just a cold.

My son was born without a critical system that helps his immune system fight infection. Yes, his immune system works, but he has no stress steroids in his body to manage the stress the illness puts on his body. We have to give him medications and hope they provide his body what he needs to get through the infection. Sometimes it isn’t enough, and we have to go to the hospital.

When you have a child with medical conditions that threaten their lives, you never know what virus will tip them over the edge. For your child, it may end up being a runny nose. For our son, Von, it could land him on life support. In fact it was a cold, a simple cold, that nearly killed him at 3 months of age.

Now we know any illness can set his body over the edge. He might appear healthy to you, but being “chronically ill” isn’t always visible. For Von, it means he has a system we manage with medication, while other kids have feeding pumps, infusions, dialysis or take shots regularly. No matter the issue they face, their bodies aren’t 100 percent, so as their parents, we have to keep them safe.

That means we miss play dates, and sometimes we may annoy you by asking you to please cover your mouth, wash your hands or stay home if your nose is running. What might not feel like illness to you could kill our children. We don’t mean to make you feel bad by asking you to do these things. We’re simply trying to level the playing field for our children. Does it hurt our hearts that our kids can’t do the same things yours can? You better believe our hearts ache as we think of all the things our kids miss out on, like birthday parties, trips to the zoo, playing outside during allergy season or even having play dates in the winter months filled with illness.

Yes, our kids miss out socially, and you might call them awkward. It’s OK if they’re awkward, as long as they’re alive. When you have to prioritize life over a social life, life is always going to win.

Please know we want to see you, and we want you to see us. So when we decline your invitation, or simply can’t go to the next play date, please know we want to be there but can’t. But please never stop asking us to be there because one of these times, the stars may align and we’ll be able to go. We might hover over our child like a hawk, but we will do our best to be there. Just please don’t ever give up on us.

If it makes you feel better to call us overprotective parents, we will gladly wear that title. We will always choose our child’s life above anything else.

Sincerely,

Parents of medically fragile children

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