The Art of Losing

The art of losing isn't hard to master;

so many things seem filled with the intent

to be lost that their loss is no disaster.

---Elizabeth Bishop, "One Art"

Friends keep telling me how easy living gluten free will be for my little one. How manageable. How it will get easier in time.

Family seems focused on what she can't have. How deprived the poor thing will be.

This is all strangely familiar.

Aren't these the same comforts and comments we offer to those newly diagnosed with diabetes?

Going gluten free is not something I've been stressing over. If anything, I feel guilty at how fascinated I have been by the process. I've segregated my kitchen into gluten and non-gluten areas, I've found suitable substitutions for most of the foods she likes, I bought her her own toaster, etc. Truth be told, she avoids most gluten items anyway unless they are particularly sweet or salty.

I'm not afraid of reading labels (I already do that), I'm not afraid of educating future teachers (I have plenty of experience there). I already cook all of our meals at home (recipes to come, y'all).

I don't believe that my child will feel deprived. I don't think she'll suffer; as a matter of fact, I think she'll thrive and blossom on the new diet. I don't believe that complications from the disease are inevitable. I'm a realist, but never a pessimist. And celiac is largely an uneventful disease, much like my vitiligo (which I suspect she also has, for what it's worth).

I think I've raced ahead to thoughts that are hard to articulate.

In the beginning, diabetes seems like it will be about the needles and the test strips and the weighing and measuring of meals. It ends up being about something entirely different.

Diabetes is so manageable, people assure you. It will get easier, they promise. In the case of diabetes, these are little white lies we tell to offer comfort.

Autoimmune disease, though, is about living on edge. It's about feeling a little damaged. It's knowing that your body betrayed you and it's about suffering consequences every time your disease reminds you of its presence.

I don't know that I can make you understand the part that actually bothers me about my daughter being diagnosed with celiac disease. It's certainly not the condition itself (which she calls "silly act").

There is a Discussion That Must Not Be Named. We, the "damaged" parents, speak of it in private phone conversations, direct messages, close circles of confidentiality. We don't talk of it openly and we assure one another we shouldn't entertain these thoughts. These thoughts...

This thought:

My child inherited autoimmune disease from me.

I couldn't protect her. I breastfed her for 18 months, I introduced gluten while breastfeeding, I delayed dairy. I had a healthy pregnancy.

The hospital did force formula on her for five days despite my protests and tears. But really? It seems positively futile to place blame there. As my husband and I always say, you make the best decision you can make in the moment with the information you have.

This reality sought her out. It found her, despite how lovingly I wrapped my weak arms around her. It chased us down and wrenched her from me like a dark wind.

I wanted my kids to have only the best of me.

Yes, yes, it's "manageable." Livable. She will be "fine." She'll "never remember" a time she was celiac-free.

I know. (I should warn you that I genuinely don't accept comfort and support well. I will snap at you.) Yes, yes, I know. (Because I can handle anything.) Stop it. I get it. I mean, thank you. Of course, yes, we will be fine. Thank you.

I'm a support giver, not receiver. An information sharer. When I'm on the receiving end, I'm defensive and critical. It's not you; it's me. Seriously.

I know we will thrive, regardless, but I can't escape the feeling that I've lost something. A game. A race. An opportunity. A degree of innocence.

I also know that I can't know. I can't say definitively that it will end here, with this diagnosis...I can't see whether a more vicious autoimmune disease (like my own) lies around the next corner. But I can hope this is the last of it. I will keep my head up and ride on, chased by the wind.

The Thicker Envelope

I don't normally take both of the kids to the supermarket with me. If you knew Lord Fussington and Lady Runsalot, you'd understand. But on Friday afternoon, I loaded them into the car for my weekly trip.

And on the way out, I stopped to check the mail.

Three envelopes. Addressed to myself, Sweetie, and Dibbs.

One envelope was thicker.

Like many of us who attended the Friends for Life conference, I took advantage of screening opportunities. I had a retinal screening for myself. I had the kids screened for type 1 diabetes markers:

Both kids tested negative this year. I found out a couple weeks ago. Whew.

And I had myself and both kids screened for the antibodies for Celiac disease, as well as for the genetic HLA markers for Celiac.

The screening day was an awful day - our worst at the conference. My daughter was cranky, tired, constipated, and in an overwhelming environment with lots of people. She had an epic tantrum with my husband in the lobby (in front of many people) while I attempted to fill out all of our screening paperwork with Dr. Fasano. I had to sit at a laptop and fill out the same multi-page questionnaire with hundreds of questions...THREE times. Once for each of us. My husband returned her to me and they were both spent. Worked up. Done for the day. That's the state we were all in as we dragged the kids in for the blood draw.

I went first. Easy peasy. But it took 3 or 4 technicians to hold Sweetie as they did the draw. She's super strong. She cried. She tried to get away. Having them do my son was even worse. He'd never ever been restrained before. I held his head as they pierced the crook of his pristine chubby arm. I held him still with every ounce of my strength, wrapped both arms and legs around his head and body...and I flipped out inside when they stuck the second arm to try to get enough blood.

When it was over, each kid got a stuffed frog and settled into the double stroller as we made our way back to our hotel room. They were immediately fine. Fully recovered.

I was shell-shocked.

I didn't say a word. Didn't want to talk to Hubster. My arms were stuck straight in front of me pushing the stroller, unbending, still feeling the muscles flexed as though I still held my son against me so he couldn't move. I got back to the room and just lost it.

I don't ever want to hold my own child down like that again.

But the kids? They were fine.

Dr. Fasano passed us in the hallway later that week and I stopped him. I apologized for my kids' behavior and for my nerves that day. Thanked him for the research he does on Celiac disease.

Nearly two months later, that thicker envelope happens to be for Sweetie.

Little Eye Go

I've always had weird skin pigment issues, I guess.

When I was a little girl, maybe 8 years old, my mom's friend french-braided my hair and teased me about a gray streak that laced through the braid. It originated at a small whitish spot hidden on my scalp where the hair grew out white.

That gray rarely showed - maybe just on the odd occasion that I exposed the underside of my hair while brushing it. I was always strangely proud of it, as though it was a pretty silver little secret hidden in my hair.

Around age 13 or so, a crescent shaped area around the very large and noticeable birthmark on my leg seemed to be blanched - as though the dark brown of my birthmark was sucking pigment from the surrounding tissue.

My arm freckles and a small freckle on my chest developed small white auras. Weird, but much of this whiteness seemed to subside or fade in my adult years, so I didn't think much on it.

Until I had Dibbs.