By Annaben Kazemi
Summer camp. Those two words send shivers down this mother’s spine. Every year, the question comes up: “Mom, can I go to camp?” My list of worries is endless; my daughter’s desire to go is boundless. Saying that being a parent is “tough” is an understatement. Bring on the complexity of raising a child with a chronic illness like a primary immune deficiency disease (PIDD) and it’s a whole new ball game. For me, one of the most trying parts of being a parent of a chronically ill child is when I have to decide what my child can do and can’t do. I hear from adult patients that the struggle over what they can and can’t do never really ends.
As a mom, I never want to put limits on my daughter, but I also want to be realistic and not jeopardize her health. At the same time, I’m trying to teach her to know her own limits. It’s this balancing act that now has me caught in the middle. The question of summer camp lingers in the air, like the smell of my neighbors barbecue on a July evening - tempting with the promise of something more delicious than what I have planned. She hasn’t chosen a camp for chronically ill kids even they do exist; she has something different in mind: overnight camp without a medical staff.
So how do I prepare my daughter for camp? Better yet, how do I prepare camp for my daughter? I begin by prioritizing my “to-do” list. Among the necessary gathering of camp clothing, letter writing and care package preparations, I decide to:
- Make an appointment with her doctor and get his consent.
- Have her begin taking prophylactic medication (she has a history of getting sick under these conditions).
- Schedule her to infuse with immune globulin (IG) as close to leaving and returning from camp as possible.
- Educate the counselor and camp director by providing a folder with information on PIDD, as well as a small medical notebook outlining her history with PIDD.
- Have a detailed medical plan written out in case something happens while she is away from me at camp.
Next, I sit down with my daughter and talk to her about camp. She’s 14, and it’s time for her to know what she needs to do to protect herself. We discuss various scenarios and role play what could happen. She assures me she is ready, but I bite my lip nervously. As I pack her duffle bag and secure her PABA-free water bottle to its strap, I think that it’s such a difficult thing letting a child go - especially one that has to cope with the added complication of chronic illness on top of the normal coming-of-age issues. It’s time for her to overcome those things that could stand in her way.
In my heart, I know she is ready. I’ve been teaching her to embrace life and live to its fullest, to never hold back because of her disease and to be her own advocate her whole life. Now I need to step back and let her lead.
When I’m most worried about what my daughter can do, I fall back on Football Coach Lou Holtz’ quote: “Show me someone who has done something worthwhile, and I'll show you someone who has overcome adversity.” What about you? What have you or your loved one overcome as you have journeyed this chronic illness or life-altering disease? What do you think you might overcome in the future?