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What I Wish People Understood About Raising a Medically Complex Child

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Here’s something I’ve learned in the last 10 years: Raising a special needs child can be a very different experience from raising a special needs child who is medically complex. I know that sounds obvious, but you don’t really realize the difference until you live it. The medications, equipment, doctor’s visits, sleepless nights, hospital stays — it can all add up into one big ball of stress. Another thing I’ve learned is people want to help, but they might not know how. They may want to say something to alleviate the stress or bring you relief in some way, but they might actually make things worse. There are a lot of things I wish people understood about raising a medically complex child. This is my top five list:

boy with blanket smiling
Amber’s son, Ivan.

1. I really don’t need your advice.

I know people mean well, but unless you’re a medical professional or a family living through a similar experience, chances are pretty good that I already know more about my son’s condition than you do. Let’s face it, as the parent of a child with a serious medical condition, I’ve had to become an expert. And yet, all we need is one seizure in public, and suddenly every bystander thinks they have relevant information to add to the situation. Yes, I’m aware of the ketogenic diet. Yes, I’ve heard of cannabis oil. No, I’m not going to discuss my son’s treatment plan with a total stranger!

Instead of offering advice, I’d prefer simple acts of support. A stranger holding a door open so I can push my son’s wheelchair through actually means a lot to me. Friends who take me out to coffee while my son is in school and let me just be myself for an hour or two are irreplaceable. We often don’t even discuss seizures at all!

2. Please don’t ask if things are “back to normal.”

When your child is dealing with a complex condition, you’ll probably have quite a few scares. Emergencies are part of your routine, and you may end up in the hospital. You may end up in the hospital a lot actually. And you know what? This is normal. This is what life with a serious medical condition looks like. So when we get out of the hospital and are back at home, please don’t ask if “everything is normal now.” The question implies that we’ve left all that pesky medical stuff behind us. Yes, life is back to “normal” — but “normal” is a very subjective word.

You know what could really help instead? Trying to help us recreate normalcy while we’re in the hospital. Long hospital stays are draining for everyone and time seems to stand still. More than anything we’re often bored, especially when Ivan isn’t allowed to leave the room. A simple visit from a friend makes the entire day brighter. And if you want to bring chocolates, I’m not stopping you!

3. Don’t bring up our illness during good times.

Another part of our normal is that we have happy times. We laugh and have fun when we can. Things can get crazy in the blink of an eye, but in between the emergencies we are living life the best we can. So why would you want to remind everyone about the bad times when we’re happy? For example, when I post a cute picture of my son smiling on Facebook, please don’t reply with the macabre comment, “Get well soon.”

boy in hospital bed
Ivan in the hospital.

Here’s a better comment, I feel: “What a handsome young man he’s become!” Because (a) he’s probably not going to “get better soon,” (b) I’d like to think our friends and family can see past his medical issues and just appreciate his smiling face now and then, and (c) he really is a handsome young man!

4. Don’t offer to help if you can’t.

This is a tough one. For some reason in our society the automatic response to someone being ill or having an emergency seems to be to say, “Let me know if I can do anything” or my favorite “Don’t hesitate to call if you need anything!” Don’t hesitate — just do it!

But I do hesitate, and do you know why? Because in my experience, 95 percent of these promises of help are provided with no intention of follow-through. When I finally do collect my courage and ask for help, the answer is generally no (“I’m so sorry! I wish I could — I’m just so busy!”). This may sound over the top, but it’s not an exaggeration to say this is kind of soul crushing. If you can’t help, please don’t offer.

And if you can help, try to help in something specific rather than with a vague open-ended “Let me know.” Offer to watch our cat while we’re in the hospital or to pick up groceries when Ivan is really ill. Offer to do something small that fits your schedule — and it’s much easier for me to accept when I know you’re already committed.

5. Please include us.

We might not come or we may cancel last minute, but please invite us to your child’s birthday party or to tag along on an outing. Living with complex medical issues and the constant fear of an emergency is isolating. It also holds us back from doing a lot of the fun things we want to do. Which means what we need more than anything are good friends and good times. If you can give us the chance at both, please do!

boy being treated in hospital bed
Ivan in the hospital.

Follow this journey on Wonder Baby.

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Originally published: March 8, 2016
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