I’m having a pretty good day. The kids are back at school, I got a massage and a manicure, I have the house to myself. My book is coming out in 4 days and I’m keeping it together. Okay, last night I did have a minor freak out, but mostly I’m keeping it together. The sun is shining but it’s not hot. The neighbour’s dog is quiet. There’s chocolate in the fridge and even though I’m not going to eat it (headaches) I like to know it’s there.
So, all in all, a good day. Lots to be happy about. Lots of be grateful for.
Considering how awesome my day sounds so far, the highlight of it may surprise you.
Some of you know about my son, Ben, and the challenges we’ve had keeping the kid healthy and growing. He was born with a liver problem but recovered after two weeks in special care after birth. We then had a blissful 8 months with him where he was healthy and chubby and doing everything he should. Even after he had a severe allergic reaction to egg and we discovered a long list of food allergies, he was still doing great. But at 13 months, everything changed when he came down with rotovirus, a severe tummy bug, and he never recovered. He couldn’t keep anything in for three weeks and he basically stopped eating from then on. He was already on a specialist prescription formula due to his allergies, and that kept him from starving to death for the next 18 months. On top of the food issues we were dealing with, he had endless ear and chest infections – one after another – and really bad stomach pain. We watched as those baby rolls disappeared and his cheeks hollowed, his stomach distended and he got dark purple shadows under his eyes. He stopped growing altogether so that between 13 months and 22 months he didn’t change at all. He was our talking, walking baby-looking toddler.
As you can imagine, as parents we were desperate to find out what was causing Ben’s pain and constant illnesses. We worked with a lot of Drs and Ben endured lots of yucky and painful tests, and to cut a long story short – he had to go off gluten.
I always said I could handle the dairy-free, egg-free, peanut, tomato, fish, soy-free as long as Ben could eat bread. I didn’t know what to do without it. I remember that first day after the results were in, driving to New World in Mana from the hospital and running in to get something for a late dinner. I paced the aisles, conscious of the fact that both kids were waiting in the car with my husband and they’d be getting cranky. It felt like there was nothing we could eat. In fact, I remember wailing internally, screaming, There’s nothing, NOTHING we can eat!
I got over it, of course. We all went gluten free for two years and that led to my husband and daughter discovering that they also need to be gluten free. Ben grew 6cm in 4 weeks. Over the course of a year, he learned to eat again and trust that food wasn’t going to hurt him. His skeleton is small, his teeth are behind.. he may always be a short kid – but he eats and enjoys food and he’s healthy. We’re thankful. When people hear that Ben is gluten and egg free with limited dairy, they usually shake their heads and ask me how I do it. I don’t know. You just do. You do it because you have to do it.
That’s not to say that it’s easy. Packing a lunchbox is very hard without bread. The gluten free bread I can source that is also egg-free is around $10 a loaf and usually hard as a rock. So I cook lunches for my kids, often early in the morning before school. Chicken drumsticks, sausages, meatballs. I bake everything. I improvise. Everything takes a long time. I don’t always want to do this. Actually, I never want to do this. But I get it done.
A week ago, we were in a deli in Blackheath that makes its own sandwiches. That’s not an ideal place to take a kid with coeliac disease and another one who’s gluten intolerant, but I had been there before with my husband and they were good. Amazingly, Ben was able to eat a ham and cheese wrap. His first ever wrap – at eight and a half years old. They even made it in a separate part of the kitchen for him. His face lit up when they brought it out and he talked about that wrap all the way until dinner.
From that day on, I was like a bloodhound searching for those wraps.
I found some today. Finding them and confirming they’re egg-free was better than a day off, better than a massage and a manicure. Better than a book coming out.
Because tomorrow, my kids are having chicken and avocado wraps for lunch. Like regular kids. For the first time in forever, their lunch will look like everybody else’s. That’s a huge, huge, deal for them.
I don’t mind at all that I’ll have to cook the chicken.