Today's article was written by my friend and fellow food allergy parent, Amy Schrumpf-Goode. Read below how food allergies have impacted her family.
How food allergies have
affected my family
Having
a young child (17 months old) with multiple food allergies affects your whole
world and pretty much everything you do, all day long. My child is allergic to many foods that are
household staples such as milk, wheat, and eggs so I know he could easily come into
contact with them at any time if our family isn't careful, and he for sure comes
into contact with them at the zoo, park, library, grocery store, basically
everywhere. Since his allergens are everywhere
I consider every moment we are not in a "safe zone" to be life threatening,
because it may be. Imagine having to
carry and be ready to inject life saving medication to your child at any time
during the 12 hours they are awake because the things that could kill them are
all around them. That's a very long time
to stand vigil and doing so every day, every week, every year. Now imagine entrusting this job to someone
else at the daycare or school. Pretty
scary isn't it? It's also scary that at
some point, I will have to entrust my child to be able to handle this. Most parents just have to make sure their
child doesn't drink bleach or run out into the street. I have to worry about my child doing all that
and eating the wrong food.
Entrusting
my son's meal preparation to someone else is frightful and possibly deadly, so
we have only eaten out with him once. I'm
not a great cook. I used to rely heavily
on seasoning packets, but most are tainted with allergens he can't have so I
have had to quickly learn how to make items from scratch, and to make up
recipes on the fly. I shop at Whole
Foods every week whereas before, I never stepped foot in the place. Now I know most of the employees and it has
become my lifesaver at finding safe foods that my child can eat and still
maintain some normalcy so he's not eating something weird.
Most
people don't realize what a food centric society we live in until you have a
food allergic child. My child can't have
the free cookie at the grocery store. Taking
him to Costco is a nightmare as the "food pushers" stare at me with a
confused look on their face when I decline whatever they are aggressively
hawking and then have to follow it up with a "because he's
allergic". No means no! He can't have the dessert and many times half
the sides at family gatherings or holidays.
Every holiday is celebrated with candy and sweets so not only do I have
to prepare ahead of time food for him, I have to find an alternative to the sweets
so he still gets something from the Easter Bunny, and I don't have any idea what
I'm going to do when he's school age.
He'll be receiving chocolate hearts for Valentine's day, and all kinds
of stuff for Halloween. I'll cross that
bridge when I get there, but I want people to realize the battle isn't just
keeping the allergens out of my sons mouth, it's about him feeling and being
treated like he's no different from others.
So, even at this young age, I feel sorry for him and how different he
may feel and I remember when I was a kid that being different sucks.
I
think the psychological aspect of food allergies is immense, almost as immense
as the severity and seriousness of the food allergy. My son is too young to know he's
"different" from many other kids.
I know better. I know all the
challenges we face now and what he may face in the future. He doesn't know that eating the wrong thing
could kill him, I don't know either.
There is so much unknown with food allergies which adds to the stress. I am constantly on alert. Add to it, the fact that because food
allergies only affect about 8% of kids, 92% of parents have no idea what I'm
dealing with or going through and seem to think that food allergies are only
slightly worse than seasonal allergies.
The general public is so ill-informed about food allergies that it makes
me have to work that much harder and be that much more vigilant and outspoken
for my child. I'm sure I come across as
crazy, a helicopter mom, uptight, over reactive, and flat out mean to many
people, including family members, but I have to because we're talking about my
son's life. Silly me, I want him to
live!
It's
hard to get people to understand the seriousness of this problem. I'm constantly asked what happens when my son
ingests (insert allergen here). The
answer is "I don't know because reactions can change, and I don't want to
find out". Which I think makes
people less trusting that my son has a serious medical condition since I can't
say for sure he will go into anaphylactic shock. Unfortunately, you can't explain all the
nuances about food allergies to someone in 5 minutes, and frankly most people
don't care enough to listen past 5 minutes anyway. I wish people would trust me when I say it's
serious. I wonder too, if some people
think because I have an epi-pen that I don't have to worry about anything bad
happening, but the truth is many kids have epi-pens and still die. And, on the flip side of that, why would I
want to inject my son with epinephrine, call 911, have a who knows how long
hospital stay, and put my child through all of that, if I don't have to? I think because they know there's a
"cure" in my purse, there's less worry.
Additionally,
there are many other problems that come with being a food allergic child. Many children have to deal with itchy,
uncomfortable skin conditions such as eczema, asthma, weight issues, and
gastroenterological issues. So, I would
like others to understand that I'm not just dealing with the food allergies but
there may be other medical conditions I have to address, watch for, or wait for
in the near or somewhat distant future.
So again, the unknown comes into play and as parent's we're just waiting
to see if another medical condition to worry about is added to the list.
Because
food allergies are so unique, and food is everywhere, I cannot come up with a
good analogy for other parents to understand what this feels like, and how
difficult it is to parent a child with food allergies. Everything is planned, I always have Benadryl,
hand wipes, and epi-pens with me. There
are always "extra steps and things" I have to do that other parents
don't, to keep my son safe. I just
really hope and pray that people cut us food allergy parents some slack,
realize we're not crazy (they would do the exact same thing if they were in our
shoes), and trust us to do what's best for our child. It's really scary when your child has
something that could kill them within in minutes and it's not something that
can be easily kept away from them, as food is all around us.
At the park with Amy and Nicholas!
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