Today’s post is by Beck from Frog and Toad Are Still Friends
My youngest child was diagnosed with Celiac Disease at nearly 15 months old. It was a tremendous relief when she was diagnosed, because she had been so sick for so much of her short life and the improvement in her health was almost immediate when she switched to the gluten-free diet.
“Expect to do a lot of mourning,” a wiser mother of older kids with severe allergies told me early on, and indeed I did do a lot of sad moping around, thinking “Oh, she’ll never be able to eat a croissant at some street-side café in Paris!” or “BEER! SHE CAN NEVER HAVE BEER!” But time has given me a different perspective most of the time – there are gluten-free versions of most things (even beer), and having her healthy is much more important than having her able to eat a Tim Horton’s maple dip doughnut. And I’m pretty capable of whipping her up a batch of maple dip doughnuts on my own, come to that.
There are still moments of sadness, though. She misses out on a lot of things, and although we work hard to have her life as normal as we can, there are still far too many occasions where there’s a treat being shared around that she can’t have and she turns away with a look of quiet, heartbroken resignation on her 4-year-old face, her normal feistiness stilled by the knowledge that there’s nothing she can do about it. And that is hard and all of the homemade doughnuts in the world doesn’t quite make up for knowing at 4 that so much of normal life is already shut out to you.
What we work very hard at is to let her know that life is joyous and fun and that there will be many things for her to enjoy in life – maybe there will be a gluten free bakery right near the Eiffel Tower, even – and if there’s not, there is still a delight in all of the things she still can have and a tremendous delight in being able to keep herself healthy and well.
I think that’s such great advice, for so many things. I mourn by son’s diagnosis every so often when something new comes up that he may not be able to do, and my other son has newly found allergies to milk and red food dye. It causes a decent amount of craziness (did you know there’s red dye in Life Cereal? How about the yellow food coloring you buy on the shelf? Lower grade chocolate?), and it’s hard each time he can’t have what the others have. But he gets an immediate, horribly stomach reaction, and he is learning in a clear way that there are consequences for our actions.
We just got a diagnosis for our son and are still trying to figure out what it will mean for his life and ours. I’m hoping we’ll get more answers to our questions at our genetic counseling appt.
If you are interested… Angel Food Ministries has a gluten-free package. I thought it might be worth looking into. Here is a link to their menu. God Bless.
http://www.angelfoodministries.com/menu_0908en.asp
It helps that your daughter has as dedicated a mother as you. I can imagine that many children with celiac simply live on a very, very limited diet. I love hearing about the new discoveries you make in gf products and recipes.
Partly that is selfish, of course, as I embark on a gf life myself. Still hard to do as an adult, so thank goodness for New Grist Beer!
I mourn here as well. No food allergies, not that I would know since he doesn’t actually EAT. But mostly it is because of his Trach – no Sand, no weenies Roasts on the Beach, no swimming. We live in SoCal all of these things are practically genetic in our family. Add to that his need to have 6 breathing treatments a day for Chronic Lung Disease…well it just sucks. I work very hard to make sure he does have some fun.
This makes a little weepy. The caring you give each of your children is so genuine. How the changes you’ve recently made for her education will protect her from the daily struggles I can imagine a gf diet vs. elementary school would bring. Soon she’ll be developing her own gf recipes, knowing what a spectacular education she’s to receive. You’ll surely get a mention in the dedication page of her first cookbook.
:0)
I appreciate this post. I have been mourning what my daughter’s diagnosis this week will mean for her. She suffers from seizures and was just diagnosed with epilepsy this week. The day before that, our older daughter’s cardiologist said we might need to move up her surgery date. When you’re caring for children with health problems, you are very thankful for the things they can do, but there are days you mourn for the things they can’t. And not everyone understands the usage of the word “mourn” in these circumstances. Thank you.
Loved this post, sweet friend.
Yeah. That’s how it is. I feel like we’ve finally hit this even keel with KayTar where I predominately think of her as “normal”, but her life really isn’t. One TINY example is that she wanted to play t-ball, but she can’t run or keep her balance on uneven ground, and she can’t bear to be in the sunlight many, many days…so we had to say no. At times like that I remember she’s isn’t QUITE normal, but we manage to get pretty close most days, in spite of the meds and tube feeds and other restrictions we live around. I hope that when she looks back she won’t see the things she missed out on, but all the wonderful things she DID get to be a part of.
Good post, Beck. There is a lot of mourning and it comes in phases. ANd then there is the rest of the time when we just enjoy our children.