“How’s his quality of life?”…
The words rang in my ears with no real answer coming to my lips. It wasn’t a question I had anticipated having to answer at L’s specialist appointment. I had prepared for countless other questions for our trip to Boston. Recent fails. Lists of triggers. Symptoms. Passed foods. Feeding aversions. Blood tests. Illnesses. Growth concerns. Next steps. Further testing. Other diagnoses…
But somehow this question left me reeling; such a seemingly simple question, yet a complex answer.
On the surface, his quality of life was great. Sure we had illnesses, food reactions and lots of doctor’s appointments but in all honesty, he was always so happy! He had no idea what he was missing out on because of his FPIES diagnosis. So that’s how we answered, with one simple word: ‘great’.
Over the last few weeks, I have been thinking about this question every day. Haunted by it really….his quality of life was great, but what sacrifices has our family made to give that to him? What happened behind the scenes to ensure our little guy stayed oblivious to what he was missing out on?
In an effort to pull back the curtain, I’ve put a lot of thought into how we ensure that his quality of life isn’t affected. The simple answer? Preparation and planning.
LOTS of it.
There are no impromptu stops to eat while we are out. There are no spur of the moment ice cream pit stops after a day at the playground. Social gatherings require the ever-present helicopter parent; it’s not an option, it’s necessary to ensure his safety. Even eating at home means monitoring safe food inventory and constantly preparing multiple meals and snacks from scratch. To even get to the point of being able to prep food, we have to carefully choose which foods we trial next in an effort to make L’s diet not only varied but similar to ours.
I wouldn’t change any of our work in all honesty. It is out of love that we pour such devotion into the small moments, always thinking ahead to make sure he doesn’t go without. I remember when I first became a mom and it was as if my awareness suddenly opened up, I was aware of my child at all times. Being an allergy mom has awakened true superpowers….seriously!
Isn’t it our job as parents to give our kids experiences, help them learn, have fun, explore, make memories, and live their BEST lives? We willingly make the sacrifices so they don’t have to. But when your child faces any sort of challenge, be it physical, developmental, medical, or any type of food allergy, that job becomes more complicated.
I know more about food chemistry and how food proteins change than I ever would have thought. I know substitutes when cooking that goes beyond the commonly known alternatives. I can do more with just a few safe ingredients than I ever imagined. I can spot dangerous crumbs from across the room. The list goes on.
Sure packing food for the day, for outings or meals out, seems like a small task in itself. But do you see the placemats I bring with us each time to give him a safe eating space? Do you see the package of wipes we go through when we arrive at a restaurant just so we can avoid triggers on the high chair and table? Do you see the constant monitoring as he sits at the table with us? The repeating to everyone “don’t feed L”?
I’m sure some of these things are more noticeable than others. You may understand or you may think we are OCD germophobes and that’s okay. I’m grateful for the confused looks because it means that you have never had to face the struggles and fear we do daily, and I pray you never do.
What you don’t see is how I try my hardest to plan the food I bring him, to resemble (at least on some level), what he will see others eating.
What you don’t see is my stress that if he throws that food on the ground, I will have nothing else to feed him without going back home.
What you don’t see is that I worry not only about his health but about how he will grow up constantly feeling left out. Meal times are an important social time across cultures. We gather around food. Celebrate with food. Share food. Enjoy food. Food in many cultures brings us together and my sweet boy is never fully included in that.
He is still young and often I can keep him happy with a similar enough substitution for him. Whether that is putting his safe yogurt in the same styrofoam cup that his sisters have when we go out for ice cream, or making him his own safe frozen treats the day before I know other kids will be eating theirs in front of him. That may mean that we look for specialized products like carrot spirals so that he can feel like he has spaghetti at dinner like everyone else.
The problem is, as he gets older this won’t always work. In fact, when I posted this exact question about the quality of life to the amazing FPIES support group I’m in, it was brought to my attention that eventually, these simple tricks may not work. What happens when he wants to taste ours because we said it was the same? Or he realizes that in fact, his “ice cream” is the same yogurt he eats daily. That his carrot spirals are not spaghetti but instead are just carrots…again…for the second time today. What happens when he no longer tolerates being confined to his stroller for outings in an effort to eliminate accidental exposures?
For now, we experiment with safe foods. We plan out trials carefully. We plan out his meals to line up as much as possible with ours. We plan our daily activities based on his available foods. We hope, that we can continue to stay one step ahead. That we can continue to plan and prep and tap into that creativity so little L’s quality of life never suffers. That he never has to see that when we go for walks in his wagon in a field, his sisters are gorging themselves on warm freshly picked strawberries. That he doesn’t realize that his “ice cream” was secretly poured into a cup while he wasn’t looking from his yogurt we brought in the diaper bag.
It may be more complicated, more work and more exhausting but it is also more rewarding! When his little face lights up at a new spin on a safe treat, when he feels included in food sharing (even if it is just his safe chips), our hearts explode. In those moments it is all worth it. We know there will be challenges as he grows. That his challenges will change as he does. As he learns that there are foods he can’t have and things he can’t do, we already see glimmers of frustration which in true toddler fashion lead to tantrums. In an effort to protect his little heart and big spirit, we prep, we plan, we research and we continue to be devoted to a GREAT quality of life.
