Dude Note: February may be over but we’ve got lots more Gluten-Free Love Stories to enjoy so I will continue the series. No matter what J. Geils says, Love Rules!!
Someday, I hope you will read this letter and see Celiac as a blessing and not a curse.
You came into our lives on President’s Day, in what was a perfectly uneventful, eventful labor. It was strangely peaceful. You were an old soul from the beginning. With a fierce personality from birth, we strove to understand you…and when you finally found your smile, we were consumed by your spirit.
And then it started. Maybe it was the throwing up for no reason. The fits you would throw around meals. Maybe you were just tired. Maybe you were a typical picky toddler. A spunky middle child. Maybe you were adjusting to your new brother. Maybe you had a parasite. Maybe you had an allergy. Maybe you were just sick a lot. Maybe you just lost your baby fat—lanky. Maybe a little clumsy.
And after months of doctor’s appointment, there were blood tests and x-rays, and then there was a mass. Maybe it was a tumor. How did I miss this? I am your mother. I was so terribly sorry and scared.
On December 23, you had surgery to correct an intussusception—three to be exact—and we were assured that you would be a new kid the next day. But that day came and no such luck. Later that night, a doctor came in the room as you were “recovering” to tell me you had Celiac. I feared the worst: you would die from this, you would miss out, you would feel weird, you would never enjoy a celebratory meal. On December 24, I stopped at Jewel to pick up gluten free groceries to bring to the hospital. I hated everyone around me who was off to Christmas celebrations. I feared you would never enjoy food the way others do. (I was wrong, Luke, by the way.)
On December 25th, we brought you home. A Christmas gift, in what was otherwise a horrific Christmas. All the doctors said that this was a rare presentation of Celiac. “We’ve never seen this before.” We hated to hear this, so we found someone who recognized your story. You went back into the hospital a week later with another intussusception. We were terrified for you to eat and for you to not eat. We were depressed about the Celiac, but every time we feared that there was something else wrong, we prayed that it was just Celiac. “I am so sorry, God! We’ll take the Celiac if you can just let his intestines heal.” Now we know you were having them for months. We were astounded that you had braved these intussusceptions for so long. We always knew you were unique, but then we realized how strong you really were.
We learned so much from you, Luke. You were so brave. The nurses and doctors joked that they were not to look you as they were giving shots and starting IVs. You were just too cute and trying to be too brave every time you were poked and prodded with needles. You recovered slowly and put Lightening McQueen band-aids on your tummy almost everyday until you felt better.
A few weeks after your second hospital stay, a woman told me, “[The diagnosis was] really is a gift.” Whatever, I thought. But, strangely, she was right. We read labels for the first time and cooked a lot together. We had unconventional parties and really came together as a family.
In the following months, there were many gluten free experiments. Many of them went horribly awry, but you never were fazed. We thanked God that you were diagnosed as a little guy. You taught us so much about dealing with the cards you’ve been dealt.
Luke, I am telling you this story because we love you like crazy. We could not have imagined a little guy as amazing as you are. And you have a magnetic, contagious, fiery personality. I see it in the way you hug your 95-year-old grandma without apprehension. the way that you insist we give you multiple hugs and kisses every day, and the way you exclaimed “dammit!” as we walked to your first day of preschool. You will test your limits. There will come a day that you will want to risk it and eat what everyone else is eating. Perhaps you will want to be like everyone else.
But please don’t. Being “you” is so much better.
I’ve always envisioned this conversation we’d have someday before a party when you lament your gluten free diet, and we would tell you, “You still get to have all the good stuff!” But I think you already know that. A couple months ago at your friend’s birthday party at McDonald’s, I feared you would just envy everyone else’s french fries. Instead, you demanded your Udi’s sandwich. (Yes, demanded. It freaked me out, actually. I had a vision of you living in our house at age 40 yelling for “meatloaf!”). I realized that you just were there to have fun. You didn’t think you were missing anything.
Last week, you were looking at the box of Chex, going through all the varieties. You told me, “but I can’t have that one, right?” You were talking about Wheat Chex. Then you said, “but someday I will be able to have that, Mom.”
I believe you are right, Luke. Someday. So for now, we are going to be thankful every day that you are healthy. We are not going to worry about tomorrow— about beer you will drink or what you will eat at your wedding or if you will ever enjoy a dinner at a restaurant. We are just going to be so thankful for what we have and what we know. We are in this together. We love you so much.