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The Challenge of Raising a Child With a Chronic Illness

Photograph by Twenty20

Kids with chronic illnesses often have to deal with medications, injections, blood draws and medical tests on a frequent basis. And let's face it—while it's is difficult for adults to deal with, it's even more of a hardship for a child, who may not be on board with the treatment plan because it hurts and they don't want to feel different from their peers.

Those of us who have children with no health issues don't really understand the challenges of raising a child who has special medical needs. I know I didn't. We've dealt with food allergies and then celiac disease, but it wasn't until my daughter was diagnosed with juvenile idiopathic arthritis (JIA) that I learned how frightening, challenging and difficult a chronic illness really was. And right on the heels of that, she was diagnosed with autoimmune hypothyroidism. Hopefully, her list will end right there.

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While we're fortunate that she only has to take her JIA medicine once a week, we still have had to learn how to administer the injections at home, and then teach her how to do it herself when compliance became, shall we say, an enormous issue. We've had to help her with the side effects of the low-dose chemotherapy that she's on (which is working very well, thankfully.) Also, the frequent visits to her doctors definitely wear her down, especially since we have to drive about an hour to get there each time.

Her immune system is also compromised, which means that it can take her longer to recover from ordinary illnesses, which means even more time out of school—and as a dedicated, motivated student, she greatly dislikes missing class. And the medication she's on can be toxic to her liver, so she needs frequent blood draws to make sure that stays in check.

However, JIA is not the only chronic illness that crops up in childhood. Unfortunately, there are tons of them. You probably know someone who has type 1 diabetes, for example, or has suffered from Crohn's Disease since they were a kid. Or what about kids who have asthma, lyme disease, thyroid disease, chronic glomerulonephritis or Marfan syndrome? The list, unhappily, seems to be endless.

Nobody wants their child to have to take daily or weekly medications, submit to a barrage of medical testing and to feel alone.

Though it's difficult for a parent and her child to deal with a chronic illness, there are ways that you can help them cope. Whether it's an afternoon out after blood tests, or a favorite meal after an infusion, or letting them select a small toy for each injection, it may be just enough to brighten their day.

And some organizations even offer camps, getaways or group activities for kids with chronic illnesses. For example, my daughter participated in a sleepaway camp last summer for kids with juvenile arthritis, and we recently went on a retreat with other families with kids with similar diagnoses.

These experiences gave her the chance to not only be in an environment where she is safe (the camp even had a pediatric rheumatologist and several nurses on site the entire time to take care of any medical needs or medication administration that was needed), but they allowed her to be around other kids who have very similar medical situations. This is priceless, as she doesn't know anyone else locally who has the same disease and the same struggles, and by meeting other kids, she feels less alone.

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Also, reaching out to other parents, whether it's in "real life" or via Facebook groups (do a search for your child's illness—chances are, there are groups out there for it) can be a huge help as you navigate your family's new normal. Those connections you make with other parents can make all the difference in the world.

Nobody wants their child to have to take constant medications, submit to a barrage of medical testing and to feel alone. And it's hard for Mom and Dad, too, as well as everyone else who loves your child. But you don't have to be alone, and you don't have to make your routines ones of drudgery. Just a little light into their lives can make a huge difference to them—and you.

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