During our drive to camp, we left the highway to get some libations for Finance Guy. Sitting at a table in one of those random Starbucks-in-a-Target, Beanie and I had our first, and only, camp prep talk. We reviewed the menu, my color coating system, and how I made the determinations of what was safe, questionable, and totally off limits. I explained that she would be allowed to consume foods manufactured on shared equipment, and ones that contained corn starch and corn syrup, (which is a no-no at home) but that I tried to avoid any direct hits of corn, and soy based foods or flours. She had just celebrated her ninth birthday a few days earlier and she listened with the intent that only one has just finishing their final year in the single digits can. I also explained that she might reach a point that she started to feel sick, and that was ok, just let her counselor know. I finished hoping that my own worries had not shown through my attempt at a non chalant facade.
"Does this make sense to you?"
"Do you have any questions or want me to clarify anything"
She shook her head. I sensed she was holding something back. I probed a little further.
"Do you have any concerns?"
"I do have one." she said quietly.
"I do have one." she said quietly.
I steeled my heart a little bit and imagined the questions. What if I get sick,? What if I can't get to my food? What if the other kids make fun of me because I am eating different? What if I get hungry? What if I forget what not to eat? I quieted my own fears and waited for her to share.
"What if I don't make any friends?"
That was it? That was my daughters biggest worry. I sighed with relief. Maybe Finance guy and I, had done something right for her to have such a normal nine year old concern.
* * *
That was the first of a series of good omens that day. We drove into the parking lot behind someone who lives just a mile from our home. We stood in line in front of another girl, who also couldn't eat soy. When we received the cabin assignments, we found one daughter was in a cabin the same number as our house, and the other in cabin Deborah, which is the name of our favorite gluten free baker at Main Line Bakery! OK maybe I was grasping straws, but at the time I was feeling pretty comforted by what I perceived as a double thumbs up, and a cheeky grin from the Universe.
After completing the checking in process, we dropped the girls at their cabins, and proceeded to the dining hall. There we met with one of the directors to review the menu that I had altered to delineate what Beanie could safely eat. As we reviewed it, the director juggled multiple calls and interruptions, managing the opening day operational crises. Each time apologizing and kindly returning her attention to me and the information I shared, graciously giving me more time then she could really spare. She also, had two daughters at camp. One attending as a camper, the other, too old to be a camper, was helping out as a support staff.
One of the interruptions, was from that daughter with camp questions. She was about 17 well spoken, with that quirky cool thing going on, that gives you just a hint of the unique, and self assured woman beginning to surface. After she left, her Mom, (the camp director) confided that after nine years of living with her daughters autoimmune diagnosis, she thought she would have a better grasp of it. She and her husband thought they wouldn't still be struggling when odd symptoms appeared, that the grief would have diminished more substantially. That there wouldn't still be so many frustrating unknowns related to her health.
Here five years into our own journey, I stood for the first time before a Mom who had been traveling the same road. Raising a child whose health was sporadic with no answers or research to guide. This is one of the aspects of raising a child with an autoimmune illness that is very difficult to convey. The worry and frustration that never really goes away, and bites you in the butt when you least expected it. This camp staff, were parents that lived with the unknown unpredictable nature of life with a wellness challenged child. I got a little choked up to be in the company of one of my own who was offering to care for my child for a week. It was like being handed an unexpected gift, followed by a huge bear hug of love from the divine. I knew at that moment we, (myself and my children) were exactly where they were supposed to be.
Everyone from the counselors to the directors were incredible. From the moment we arrived we were surrounded with people who understood. Understood the anxiety of raising a child with a food mediated illness. Understood the guilt of needing a break so badly from the worry, and the child that you love so much. The fear that you are the only one who can really keep your child safe enough to keep functioning in the face her own immune system's attack. Understood that no matter how good, how vigilant, we are as parents our children won't ever be free of the challenges of their illness. Understood that weight on our hearts doesn't ever go away. Understood, without a word of explanation. I couldn't ask for anything more.
* * *
Beanie stayed healthy enough to enjoy all 6 days of camp. The parent pickup was a victorious frenzy of sleep deprived hugs, and photo shoots with new friends. Soon to be followed with the tears of good byes. As we climbed into the minivan there were stories of froggy potties, and the spider showers and sobbing lament for 'Cheesy' the mouse that lived in the one of the bath houses. Finance Guy and I, so happy to have them with us again ,we sat with ear to ear grins, me wiping away tears, soaking in as much of the moment as humanly possible.
It is hard to express with words all the feelings that swirled within me that warm August afternoon as we drove on the unfamiliar highways towards our distant home. The image that continues to comes to mind, is the Grinch who stole Christmas. After chronic illness's repeated attempts to squelch the magic, joy, and wonder of childhood, my own spirit's ability to bounce back seemed to have diminished, in the face of the resulting responsibility and fear. Our Camp Celiac experience loosened the hold that my children's illness has on my heart,......"and what happened then? Well in Whoville they say, that the Grinches small heart, grew three sizes that day"
Thank you Camp Celiac