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Posted on 23. January 2014

Letting Them Fly

By Jessica Leigh Johnson

Raising kids today is hard. They face so many obstacles in life: bullying, exposure to graphic violence, being pressured by peers to engage in risky behaviors, and the list goes on. But raising children with a primary immune deficiency disease (PIDD) is even harder. Not only do PIDD kids face the same threats to their well-being as "normal" children, but they have the added risk of becoming very sick by coming in contact with common, everyday germs that most kids can fight off without complications. And, it seems that winter is an especially dangerous time of year when all kinds of "bugs" come out of hiding and spread like wildfire through schools and within families.

So, it seems that I have forgotten what time of year it is, because in a moment of temporary insanity, I signed my 10-year-old immune-deficient son up for winter camp. His best friend was going and didn't want to go alone, and it sounded like a good idea at the time. Besides that, my son has always wanted to go "night tubing." So, I gave into the pressure and agreed to send him with his friend. 

Now that that dreaded weekend of camp is fast approaching, I've begun to question my decision. Just last night, I learned that the flu has made its yearly appearance in our community. Now I'm asking myself: "What was I thinking? How could I agree to send an immune-deficient child to camp in the winter? Twelve boys in one room, all sharing one bathroom! It's a recipe for gastrointestinal disaster! I'll be lucky if he makes it home at all!"

But, then I remember the deal my husband and I made seven years ago when our son was hospitalized for more than a month with pneumonia and a life-threatening condition called HLH. For a while, it didn't look like he was going to pull through. The doctors diagnosed him with a PIDD and explained to us what his future would hold. My husband said: "All I want for him is to have a normal life." And, basically, aside from weekly subcutaneous infusions and daily chest physiotherapy (and a very worried mother), he has just that: a normal life. 

But for some reason, every time my son is faced with an opportunity to do what other kids are doing, I get scared. I want to say no and keep him home where he's safe. But I can't do that forever. Eventually, he will have to grow up. He will have to spread his wings. My job as a parent isn't to keep him safe in the nest forever; my job is to help him learn how to fly. Sure it's dangerous out there; no one would argue with that. But my husband and I promised him when he was little that if he got the chance to live, we would let him do just that. And he will. Hello winter camp, here we come.


Comments (1) -

11:59 AM on Monday, January 27, 2014

Anyone with a chronic illness must choose whether that illness or disability will become a handicap.  I also have chronic illness and, while mine is not immune-related, I have had to make the decision to not allow my illness to dictate my life.  With the positive attitude you are showing your son and teaching him the balance between living life and necessary caution, I expect he will live a well balanced life when he is truly on his own.

You will never stop worrying about his health, Mom, but kudos for showing him balance.

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