The Hulk was glutened today. I feel like I failed him - I did not protect him and I did not do everything I could have to keep him safe. It sounds dramatic I am sure ... but it is my job and in simple terms, I screwed up. I also learned from it ... which is I suppose, the upside of it.
He and his sister were playing with friends before dance class. They each had their own juice boxes - and their own snacks. Her snack contained gluten and his obviously did not.
I did not notice that he took her juice box until he had already been drinking from it ... he didn't even have to eat her snack. Just drinking from her juice box - because she had a snack with gluten - was enough to trigger symptoms about an hour later. Hulk loves dance class. He is almost always the first to go in with a huge smile. Today he started crying, he clung to my neck harder than he ever has and he told me he was scared - but he did not know why. It took almost 20 minutes to calm him down and get him even near the door. We made a small game of knocking on the door and he wanted to go in ... until we stepped in the room. I gave his teacher permission to take him crying hoping that once he was in he would settle and enjoy himself. Luckily that was the case. But when he came out - it was back to tears and strong emotions again.
The reality is that Hulk will have Celiac forever. I have in my head come to terms with it. There is no cure, there are not medications to help ease symptoms when one has ingested gluten (I can only hope those things change) ... he has to eat a strict diet that is void of gluten - including cross contamination from gluten containing things. And that is hard - so hard. It can happen in ways you never expect. So while my head has come to terms - my heart hurts so bad for him (and everyone living with Celiac). I have to deny him treats he is curious about and wants to try because he sees others having it - and tell him I will do my best to find a safe, gluten free option. Sometimes, he even beats me to it and will say "you find me a gluten free kind of these please".
So how much does it take?
It takes a crumb to get him sick, a tiny crumb, to feel the effects of gluten in his system.
Celiac also takes away the ability to just go out and grab food. It takes away the sense of trust when others make food. It takes away our ability to just leave the kids with someone - I prepare full meals, snacks, treats ... and I still worry it isn't enough - that he will come into contact with gluten some how. It takes time - you can no longer trust foods because they can change from batch to batch in the manufacturing process - from how they are packaged to the ingredients used. It takes from being able to just go hang out and have a snack with friends on a whim. It takes his ability to do things he loves when he is 'glutened'. It takes away his ability to control and process his emotions and his ability to just feel well. I could continue on and on ...
What it doesn't take?
For me at least - my drive ... my motivation. Perhaps, it has given me more in that sense. I will do anything necessary to keep him from eating or coming into cross contaminated food. I can not take this from him - I would in a heartbeat - but I can devote my energy toward keeping him as safe as possible and helping him learn how to lead a healthy life with it. I will do everything to keep him from being sad about it - to empower him to make smart choices and find safe alternatives. And to empower him to be able to speak up and advocate for himself, especially regarding this disease when others don't understand it.
I am sorry today I missed the juice box Hulk. Next time I will be more careful for you.
He and his sister were playing with friends before dance class. They each had their own juice boxes - and their own snacks. Her snack contained gluten and his obviously did not.
I did not notice that he took her juice box until he had already been drinking from it ... he didn't even have to eat her snack. Just drinking from her juice box - because she had a snack with gluten - was enough to trigger symptoms about an hour later. Hulk loves dance class. He is almost always the first to go in with a huge smile. Today he started crying, he clung to my neck harder than he ever has and he told me he was scared - but he did not know why. It took almost 20 minutes to calm him down and get him even near the door. We made a small game of knocking on the door and he wanted to go in ... until we stepped in the room. I gave his teacher permission to take him crying hoping that once he was in he would settle and enjoy himself. Luckily that was the case. But when he came out - it was back to tears and strong emotions again.
The reality is that Hulk will have Celiac forever. I have in my head come to terms with it. There is no cure, there are not medications to help ease symptoms when one has ingested gluten (I can only hope those things change) ... he has to eat a strict diet that is void of gluten - including cross contamination from gluten containing things. And that is hard - so hard. It can happen in ways you never expect. So while my head has come to terms - my heart hurts so bad for him (and everyone living with Celiac). I have to deny him treats he is curious about and wants to try because he sees others having it - and tell him I will do my best to find a safe, gluten free option. Sometimes, he even beats me to it and will say "you find me a gluten free kind of these please".
So how much does it take?
It takes a crumb to get him sick, a tiny crumb, to feel the effects of gluten in his system.
Celiac also takes away the ability to just go out and grab food. It takes away the sense of trust when others make food. It takes away our ability to just leave the kids with someone - I prepare full meals, snacks, treats ... and I still worry it isn't enough - that he will come into contact with gluten some how. It takes time - you can no longer trust foods because they can change from batch to batch in the manufacturing process - from how they are packaged to the ingredients used. It takes from being able to just go hang out and have a snack with friends on a whim. It takes his ability to do things he loves when he is 'glutened'. It takes away his ability to control and process his emotions and his ability to just feel well. I could continue on and on ...
What it doesn't take?
For me at least - my drive ... my motivation. Perhaps, it has given me more in that sense. I will do anything necessary to keep him from eating or coming into cross contaminated food. I can not take this from him - I would in a heartbeat - but I can devote my energy toward keeping him as safe as possible and helping him learn how to lead a healthy life with it. I will do everything to keep him from being sad about it - to empower him to make smart choices and find safe alternatives. And to empower him to be able to speak up and advocate for himself, especially regarding this disease when others don't understand it.
I am sorry today I missed the juice box Hulk. Next time I will be more careful for you.
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