It has been awhile since posting last. A lot to catch up on but wanted to write about something I was asked recently. Someone new to Celiac (their child was diagnosed) asked me what the hardest part of the Hulk's Celiac diagnosis was or is.
Almost 2 years into this, my answer is much different than it would have been I had been asked the first few months after. If you asked me then - it would have been something along the lines of "learning what is and is not gluten free, watching for hidden gluten and having to pack basically a meal every time we left for more than just a Target trips length of time".
My answer today is much different. We have a strong grasp on what is gluten free and what is not. I can grab stuff and quickly get out the door. I know where I can stop in a pinch if needed. Packing a full Thanksgiving or Christmas dinner for multiple houses - I got that. No problem. I will deal with the strange looks, the people thinking I am being over protective and even ridiculous to the precautions I/we take. I hope that people are not offended if we turn away gluten free food they have made (unopened packaged food is different) with him in mind. When Hulk was diagnosed I stopped using every pot and pan, every baking dish, every cooking utensil in my own kitchen because there was just no way to completely clean them from the gluten that was cooked in them before. We replaced everything. I hope people know that I truly appreciate it and love they were thinking of him. I just can not take chances with his health when the risks for other diseases and complications in life are so big.
Today I would say the hardest part of the Hulk's Celiac diagnosis is knowing that he will at times feel left out and there is no way around it. There will be a day he goes out to eat with his friends and orders nothing but a drink because the restaurant not safely prepare anything for him. I pray his group of friends looks out for him and takes his disease into consideration. I hope his future friends have parents who are raising their kids to be kind and considerate of others in that sense. I also know that going to a safe place - will simply not always be an option and has nothing to do with how kind his friends are. There will be times treats are handed out at school and they will not be safe for him. He will have to resort to his own treats and in that moment he might feel different. That is because he is. His body has different needs. Just like other kids with food allergies or other medical conditions. At the end of the day, he will be okay but I know there will be times his feelings are hurt and he is allowed to feel that way.
We do everything that we can to protect him while we can. We did not have a choice when it came to his diagnosis. We could not say "sorry but no thanks, we don't want him to have Celiac disease". We can however, control how we live and deal with situations that involve food. If it is our choice to decide where to eat, we will always choose somewhere that can safely prepare food for him. His sisters know this and they do not complain. They want him to be and feel included and safe. They are constantly looking out for him, making sure that what people give him is safe. I could not ask for more compassionate and understanding kids. If it is out of our hands where we go, we ask him what he wants to eat while there and I make sure to prepare and bring it with us so he still has that choice. We are honest and tell him they can not safely make him food but he can order his drink there. But if I am being honest - it kills me inside. The guilt tears me up that I can just sit and eat something without thinking and he has no choice but to eat what we brought with. My husband and I will eat in shifts at parties if the food being served is something he would normally like to eat at home. We are okay with that. We are happy to eat in shifts so he does not need to sit around and watch others eat something he thinks looks yummy. Take pizza for example. We can not always bring a safe pizza for him. We avoid cooking in other peoples ovens at all cost. I will bring my air fryer with to prepare him a hot meal if we are going to a house. I do my best to ask what foods will be served where we are going so I can get him some of the same things. I can not always do that unfortunately. Even bringing his food causes a great amount of anxiety (for me) when it is meal time. I need to be aware when I touch my food, that I don't then reach over to help him with his again unless I go and wash my hands first. I always make sure he is settled and happy and has everything he might need before I start eating. I am always watching that someone doesn't by accident, drop something on his plate when reaching or grab his drink - or think they are being helpful by helping him with food without washing their hands first. I watch his drink and that he does not use his sisters or someone else's by accident.
I know that it can be hard for others to understand why we are so protective of his food and what he eats. I know I might at times seem over-bearing. We believe science is real. Science tells us that a 100% gluten free diet/life is what he needs to avoid a future of other serious illnesses - mental and physical. We do what we need to do to protect him and we will always do what we need to do to protect him.
I carry an immense amount of guilt. That I know isn't fair to do to myself but at the same time, I can not help it. I assume I am the one that carries the gene and am the reason the Hulk has Celiac. I passed on a bleeding disorder that all 3 kids have - that I did not know about until I was 35. I would love to have everyone have the genetic test done to see who might be a carrier the Celiac gene(s) in our family. It would be beneficial for the girls to be tested so we know if we should be watching them or testing them yearly for the disease like we are now. If they don't, we could stop having that yearly test done and stop worrying if something will trigger the disease like it did with the Hulk. I am looking into the cost and what we need to do to qualify for it to be covered or mostly covered by insurance. I joked with my husband that I wanted to ask for the genetic testing for Christmas. I know that if it was my husband that carries the gene and passed it on - I would not blame him like I would and do myself.
It is funny how guilt works, isn't it?
Almost 2 years into this, my answer is much different than it would have been I had been asked the first few months after. If you asked me then - it would have been something along the lines of "learning what is and is not gluten free, watching for hidden gluten and having to pack basically a meal every time we left for more than just a Target trips length of time".
My answer today is much different. We have a strong grasp on what is gluten free and what is not. I can grab stuff and quickly get out the door. I know where I can stop in a pinch if needed. Packing a full Thanksgiving or Christmas dinner for multiple houses - I got that. No problem. I will deal with the strange looks, the people thinking I am being over protective and even ridiculous to the precautions I/we take. I hope that people are not offended if we turn away gluten free food they have made (unopened packaged food is different) with him in mind. When Hulk was diagnosed I stopped using every pot and pan, every baking dish, every cooking utensil in my own kitchen because there was just no way to completely clean them from the gluten that was cooked in them before. We replaced everything. I hope people know that I truly appreciate it and love they were thinking of him. I just can not take chances with his health when the risks for other diseases and complications in life are so big.
Today I would say the hardest part of the Hulk's Celiac diagnosis is knowing that he will at times feel left out and there is no way around it. There will be a day he goes out to eat with his friends and orders nothing but a drink because the restaurant not safely prepare anything for him. I pray his group of friends looks out for him and takes his disease into consideration. I hope his future friends have parents who are raising their kids to be kind and considerate of others in that sense. I also know that going to a safe place - will simply not always be an option and has nothing to do with how kind his friends are. There will be times treats are handed out at school and they will not be safe for him. He will have to resort to his own treats and in that moment he might feel different. That is because he is. His body has different needs. Just like other kids with food allergies or other medical conditions. At the end of the day, he will be okay but I know there will be times his feelings are hurt and he is allowed to feel that way.
We do everything that we can to protect him while we can. We did not have a choice when it came to his diagnosis. We could not say "sorry but no thanks, we don't want him to have Celiac disease". We can however, control how we live and deal with situations that involve food. If it is our choice to decide where to eat, we will always choose somewhere that can safely prepare food for him. His sisters know this and they do not complain. They want him to be and feel included and safe. They are constantly looking out for him, making sure that what people give him is safe. I could not ask for more compassionate and understanding kids. If it is out of our hands where we go, we ask him what he wants to eat while there and I make sure to prepare and bring it with us so he still has that choice. We are honest and tell him they can not safely make him food but he can order his drink there. But if I am being honest - it kills me inside. The guilt tears me up that I can just sit and eat something without thinking and he has no choice but to eat what we brought with. My husband and I will eat in shifts at parties if the food being served is something he would normally like to eat at home. We are okay with that. We are happy to eat in shifts so he does not need to sit around and watch others eat something he thinks looks yummy. Take pizza for example. We can not always bring a safe pizza for him. We avoid cooking in other peoples ovens at all cost. I will bring my air fryer with to prepare him a hot meal if we are going to a house. I do my best to ask what foods will be served where we are going so I can get him some of the same things. I can not always do that unfortunately. Even bringing his food causes a great amount of anxiety (for me) when it is meal time. I need to be aware when I touch my food, that I don't then reach over to help him with his again unless I go and wash my hands first. I always make sure he is settled and happy and has everything he might need before I start eating. I am always watching that someone doesn't by accident, drop something on his plate when reaching or grab his drink - or think they are being helpful by helping him with food without washing their hands first. I watch his drink and that he does not use his sisters or someone else's by accident.
I know that it can be hard for others to understand why we are so protective of his food and what he eats. I know I might at times seem over-bearing. We believe science is real. Science tells us that a 100% gluten free diet/life is what he needs to avoid a future of other serious illnesses - mental and physical. We do what we need to do to protect him and we will always do what we need to do to protect him.
I carry an immense amount of guilt. That I know isn't fair to do to myself but at the same time, I can not help it. I assume I am the one that carries the gene and am the reason the Hulk has Celiac. I passed on a bleeding disorder that all 3 kids have - that I did not know about until I was 35. I would love to have everyone have the genetic test done to see who might be a carrier the Celiac gene(s) in our family. It would be beneficial for the girls to be tested so we know if we should be watching them or testing them yearly for the disease like we are now. If they don't, we could stop having that yearly test done and stop worrying if something will trigger the disease like it did with the Hulk. I am looking into the cost and what we need to do to qualify for it to be covered or mostly covered by insurance. I joked with my husband that I wanted to ask for the genetic testing for Christmas. I know that if it was my husband that carries the gene and passed it on - I would not blame him like I would and do myself.
It is funny how guilt works, isn't it?
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