“I don’t know how you manage.”
“I could never do it.”
“What do you feed them??” (asked incredulously not curiously)
“They will out grown it.”
“My cousin’s husband’s sister’s daughter…..”
“Oh poor thing will never know what (insert random food choice here) tastes like!”
“I could never live if I couldn’t eat (fill in the blank).”
Nearly every encounter with someone new results in at least one of these being said to us. I am so sick of it but at the same time I understand it. We aren’t normal. We can’t pretend to be. We are one of those families. We are the family that reads every singe label even on the foods that was “safe” last time we were at the store. You just never know when a company will change their ingredients and that could be deadly to us. We are the family who avoids restaurants like the plague. We are the family that asks you to wash your hands and face after you eat certain items when you are around us. We are the family that asks for certain foods to be restricted from whatever occasion is taking place, and at one time from the classroom our child was in. We are the family who eats mostly (90% of the time) organic, non-GMO certified, non-processed, foods. No, we are not elitist with our choices and opinions. We are a food allergy and Celiac Disease family.
In our case it is genetic. I have a severe seafood allergy that gets worse the older I get. It isn’t a shellfish allergy. It is all seafood. If I touch tuna fish I break out in hives. An accidental intake of Caesar dressing results in a mad scramble for the Benadryl. I do not want to think about what eating an actual fish would do to me. My dad and grandpa can’t eat certain fish without getting sick and my sweet niece is allergic to seafood also. Another niece is definitely sensitive to seafood if not actually allergic.
Bug was one year old when he had a severe allergic reaction to apricots. Interestingly this is indicative of a possible future latex allergy, or at least that is what we were told by the medical professionals. My grandma had a latex allergy and I am very sensitive to it. Connection? I think so. For numerous years he had to avoid all stone fruits (fruits that contain a pit). He has grown to the point where he can eat anything except apricots. We limit latex exposure just to be safe.
C-Dog. Poor C-Dog. It was Mark’s former supervisor who first suggested C-Dog may have Celiac Disease. He is a rare and fortunate individual to be diagnosed at the very early age of 3. This was way before gluten-free was a food trend and it was not easy to feed him. Even worse was he has Sensory Processing Disorder so textures were always a battle. Even now we still make mistakes and accidentally give him something that has cross-contamination. How do we know? Well, every time gluten passes those lips he develops a weird smell that doesn’t go away with a shower. Deodorant and cologne can’t compete with the “gluten smell.” His body has to heal itself from the contamination and then the smell eventually fads. As my mom’s family digs into our medical history past we are learning this is a genetic disease, in fact my lovely aunt has recently been diagnosed also.
C-Dog also has the inability to digest and metabolize simple carbohydrates properly. If you are familiar with gluten free then you know simple carbohydrates are a huge replacement in many recipes. We try to avoid simple carbs, but it isn’t easy. He has to take supplemental enzymes whenever he eats.
Elf has NINE, yes nine, food allergies. Each a different level of severity. Each one of her allergies can be traced back to my uncle who had all of them and then some. Sadly he passed away in the 50’s of Leukemia. My mom has all of his medical records and that is how I know my daughter shares his allergies. She is allergic to milk (no she is NOT lactose intolerant and NO she will not outgrow this allergy considering the severity of it). She is also allergic to soy, eggs, rice, white potato, wheat, oats (yes, even the gluten free ones), peanuts and treenuts. Yes, she can have coconut. Coconut is NOT a nut and is in fact a separate allergy. I am very thankful she can have coconut! She has outgrown several sensitivities. For awhile we had to limit citrus. She can now eat it to her heart’s content.
Princess is allergic to corn. Between her corn allergy and Elf’s soy allergy we cannot eat anything in a package, or so it seems. The culprit is the oils, usually cooked in but sometimes an ingredient (like in dressings). We even have to be careful which brands of olive oil we buy as it has been discovered many popular brands really aren’t 100% olive oil.
Princess also has a pretty significant sensitivity to gluten. She has not been diagnosed with Celiac Disease but her Dr encourages a gluten free diet for her. She is also sensitive to eggs and lactose. She can eat a bit of cheese or yogurt but we have to monitor her intake.
That leaves Zen. He just recently started eating foods other than breastmilk. I pray he doesn’t add to our list. I hold my breath, hoping and praying. Of course many foods he will never have. He will never have gluten or cow milk. He will drink coconut milk like the girls and I do. I will try him on cheese and yogurt though once he is a bit older.
What about those pesky comments and questions from above?
Well here are my replies.
“I don’t know how you manage.” I have no choice. If it was your child you would manage also. I read a lot and connect with others in similar situations and learn from them.
“I could never do it.” Yes you could. When the choice is do it or die (literally) you do it.
“What do you feed them??” (asked incredulously not curiously) I feed them food. Just because it isn’t what you eat doesn’t mean it isn’t food. Fruits, veggies, and meat are the main elements of our diet.
“They will out grown it.” Perhaps, but that is not likely. Please do not assume you understand our medical history based on *YOUR* experiences. Every situation is different. Your words do not offer me hope, only sadness because I know it just isn’t true.
“My cousin’s husband’s sister’s daughter…..” As much as I love to share stories with other people in the same boat I do not want you to think you understand what my life is like because you know someone who knows someone who has an allergy. However, if it is close to home (you, parents, sibling, etc) then please share! Solidarity!
“Oh poor thing will never know what (insert random food choice here) tastes like!” Well they do not know what they are missing and usually they aren’t missing on anything. Packaged junk food is merely fillers and chemicals. My kids still get treats and they are amazing because they are not full of the other stuff. For example, I use Enjoy Life chocolate chips (which is safe for all of them) and melt them to make candy!
“I could never live if I couldn’t eat (fill in the blank).” Actually you could never live if you ATE that food and were allergic to it so this statement frustrates me the most.
What CAN you say? Well, a simple “That sucks” works because it does suck. Living in fear that your child can die because someone offers them a candy (think lollipops at the bank which have corn syrup in them) sucks. It sucks knowing that cross contamination with gluten is invisibly damaging the insides of your young child. It sucks having to take 2 hours to grocery shop because every label MUST be read. It sucks. That is all.
**A very big thank you to my kiddos for drawing these lovely pictures for me. ❤