“Psst, let’s go have a pie date,” I said. His eyes grew wide, as any two year old’s would at the mention of dessert before it was even noon. It is rare I get one on one time with my oldest during holiday gatherings, and I figured I could lure him away from the extend family for a few moments with the promise of leftover Thanksgiving sweets. I plated the last two tiny slivers of pie, the pieces that had been left behind because no one else had wanted to be guilty of taking the last bites. I topped mine with whipped cream, and headed over to the kids table where he was anxiously waiting.
He looked at his plate, and looked at mine. His eyes fell, his head hung, and his fork went untouched.
“What’s wrong, honey?” I asked, surprised.
“I don’t want to tell you,” he replied quietly.
I looked down at my plate, piled high with whipped cream. “Is it the whipped cream?” I quickly scraped it off.
He looked up, smiled and dug in.
My son is allergic to dairy. We’ve known that since we took him on a ten hour round trip to see a pediatric gastroenterologist, pulling over so that he could throw up on the side of the road, just like he had done for the last six months. He is also allergic to peanuts and nuts, which we’ve known since we took him to the ER on New Year’s Day, and then again several months later. He had always been perfectly content to eat his dairy-free meals alongside our dairy-filled ones, until now. My heart shattered watching his face fall. If anyone wanted to protect him from pain, it was me; and if anyone was to know how he felt, it should have been me.
It’s awkward to talk about in polite company, but I have a bladder disorder that necessitates a strict diet avoiding any acidic or irritating foods. It’s a long list, including but not limited to: chocolate, alcohol, coffee, tea, soda, fruits, tomatoes, spicy foods, sour foods – in short, all of the things that taste good. Dairy and peanuts, however, were not on the list and after the resurgence of my disorder in recent months, the foods we are all able to eat together as a family has become increasingly limited. Dinnertimes at our household feature a short and steady rotation of monochromatic meat, vegetables, and grains.
“How can you live like that? I would just die if it were me,” people used to tell me when I was first diagnosed. It stung. I watched my friends down beers at the local breweries, and munched awkwardly on popcorn instead. I struggled to stay awake in grad school classes without my morning cup of coffee. I felt guilty about the life for which I had unwittingly signed up my brand new husband. The diet helped and the pain I had been experiencing for years began to subside. The pain of living a life without my favorite foods lingered, however. Food is ritual – the Christmas Eve hot chocolate, the bottle of wine to celebrate our wedding anniversary, the lasagna my mother used to cook for me on my birthday. Losing the rituals was the hardest part for me.
Often I hope that medicine advances and one day my son and I together can dig into a hot fudge ice cream sundae, topped with peanuts, cherries and sprinkles galore. I picture being able to send him to school with a peanut butter and jelly sandwich in his lunch bag, and then meeting a friend for a cup of coffee. Whenever I see families dining together in restaurants, enjoying summer afternoons at the ice cream store, or grocery shopping without stopping to read every label, I wonder if they know how lucky they are.
Of course they don’t.
And neither do I.
My son is kicking his legs back and forth underneath the table, bouncing up and down and eating the (dairy-free) crust off his pumpkin pie. I smile to myself, thinking he must take after his Dad, as I had eaten the pumpkin and left the crust.
It’s impossible for any of us to understand how lucky we are. It had never occurred to me to be grateful for chocolate ice cream, spaghetti and meatballs, or lemonade until I was told I couldn’t eat them anymore. And now I realize that there are so many things for which I should be grateful. There are the obvious – that my son is here with me to share a piece of pie with, or that despite our limitations, we have never wanted for food enough to eat. Then there are the ones that are not so obvious, all of the things that I would only realize I loved and was grateful for after they were taken away. My list of gratitude would be long if only I knew where to begin.
I’m not glad this happened. I would much rather not carry an epi pen, or have never made my kid cry in the grocery store because I yelled at him for eating a piece of candy without asking, than have learned a valuable life lesson. But a life full of tedious dietary restrictions has happened, and I am grateful to have found something worthwhile in it.
We finish our pie, and my son runs off back to grandparents, aunts, and uncles, the sugar making him dance around the room. His little brother bounces along with him. Now I understand that my life is full of things to be grateful for, things I still don’t even realize I should appreciate. Watching them play, I do know what comes first on that list. Them.
Jackie Semmens 