I will warn you now, that this post will be
subject to controversy. You may or may not agree. But I feel being silent is
irresponsible. Yes, I know this post sounds angry and if you have read my
former posts you know I am not an angry person. But, every time I sit down to
alter these words and soften them just a little, I get fired up again. I have
held this post and revised it for several weeks.
I did promise candor in my words. I promised to
be honest and naked about my feelings and experiences of raising children with
life threatening allergies, environmental allergies, sting allergies,
giftedness, and developmental delays. So with all the warnings I can throw out
at you, without further ado, my angry post.
What NOT to say or do.....
1) If you talk to the parents and work with them
to serve safe foods so their children can fully participate and promise them a
safe environment for their children, IT IS NOT okay to change your minds at the
last minute and knowingly serve life threatening foods. It is not okay in so
many levels.
The parents are not as emotionally prepared as if
you had been upfront in the first place. If the children with life threatening
allergies are very young or developmentally delayed the children do not
understand that they cannot have the food. They do not understand the dangers
of sharing with their friends. The parents must become the crazed referees that
are trying desperately to maintain conversations while internally petrified
that at any second their baby will drop to the floor, eyes rolling in the back
of their head, gasping for air, with hives all over their body in a matter of
mere moments- yes, it really IS that serious. Yes, it really DOES happen that
fast! And no, I am NOT exaggerating!
I recently experienced this exact situation. My
oldest little guy was blissfully playing outside in the great outdoors; you
know where ants, pine, and oak- his other anaphylactic reactions are found. I
walked every inch of the yard searching for ant mounds then came inside and
prayed for normalcy while people in every room of the house and outside were
enjoying deviled eggs. Everywhere I looked I saw poison. I asked my husband and
trusted niece to watch (OK, stalk the children) while I went to the bathroom
and cried. I was so anxious and to be honest, mad. I believed this would be a
safe environment. So I cried, put on my big girl panties, never sat down to
enjoy the festivities until the end of the night when all the food was consumed
and safely put away.
No, nothing happened. It does not mean nothing
can happen if this occurs again. To put it lightly, we were lucky.
2) Do not have the attitude that once an
anaphylactic child arrives "if they don't like it they can leave".
Raising children with anaphylactic allergies
takes a huge emotional toll on a family and the children themselves. My 6 year
old already knows too much about anaphylaxis and life and death choices. He
remembers gasping for air, getting hives and feeling hot all over, and the
feeling of asthma and general malaise afterwards all too well. We try our best
not allow it to run his life and be in the forefront of his mind at all times.
He is a child and deserves to be a child. It is emotionally detrimental to the
children to yank them away from their friends and fun for something that is out
of their control. I know there have been a few situations in which I have had
to leave parties because there were children running around waving peanut
butter sandwiches in their hands, eating boiled eggs, and eating cashews...
everywhere I turned I saw "poison". What the other people still
enjoying the party do not know and cannot understand is that on the way home we
have two children bawling at the injustice of leaving their friends, while
mommy or daddy play the scapegoat and protect them from the truth of the
situation. Please understand my children are educated, my oldest understands,
my littlest one has no concept of the dangers. It is a difficult and delicate
juggling act keeping them educated, but not creating paranoia or feeling
excluded because it rules so many factors in their lives.
3) After you have passed out your allergy filled,
gluten containing, yummy cupcakes with beautiful and colorful decorations to
everyone and the allergy parent tries to quickly find safe alternatives that
they brought from home to ensure that their allergic child can be included that
are pretty much plain and boring and will not have pretty sprinkles, it is NOT
okay to say "See everything worked out okay in the end. No big deal"
My children still felt excluded when it could have been avoided by simply
communicating when you were asked if foods would be served- and they have to
sacrifice too much already. And, I still have to play referee to ensure that
the other children do not contaminate the environment or sweetly and innocently
share with my child.
4) Do not, let me repeat -Do Not,
say to a parent of children with life threatening allergies, "Well,
everyone else has to live and we all love ______ (fill in the allergic food
here)".
Your families’ love of a food and inability to
sacrifice it during an event that is shared with my children is nothing
compared to the inability of my children to breathe. Frankly, there is not a
food in the world that is "to die for!"
I recently had a family member say this to me and
it still makes me see red! "You cannot expect everyone to bend to your
children's needs all the time, people have to live". This person is
someone I care about deeply. What I wanted to say was, "Do you have to be
the cause of an anaphylactic reaction to understand that your selfish decision
to eat _____ can kill my child? Do you need to live with the guilt of possibly
killing your loved one because you fail to educate yourself and realize the
seriousness of the situation! Sadly, if that is what it takes, then I hope you
fail to ever understand and you remain forever ignorant!"
But, I KNOW WHAT NOT TO SAY and instead
say, "I realize that there are those family members that do not understand
the seriousness of anaphylaxis so we will never be able to share in these
family gatherings. It is sad that you miss out on precious time with these amazing
little ones. They deserve those memories of family times together, but they
deserve the chance to grow old too. So we will continue to pass on the
invitations, but thank you." (Ok, maybe I don't know what to say.... I
realize in re-reading and re-reading that is pretty blunt too. I will take a
moment to tell you I have the kindest of intentions when I open my mouth, but I
call a spade a spade. It's who I am.)
5) For all schools, businesses, and restaurants
this one if for you, when we ask about the safety of your facility please do
not reply with, "Well, we have not had a problem yet." I have to tell
you, that does not ensure confidence in a person. While I am on it, please do
not tell me you looked at the ingredients and "nope- nothing is safe"
when you have only been out of my sight for 30 seconds! Or worse, "yes,
everything is fine" when you have only been gone mere seconds. You are
clearly telling me we are not worth your time and you are not taking our
children's life threatening condition seriously.
6) You cannot say "I do not have
children with life threatening allergies, but I understand how you feel".
Thank the good Lord everyday, that NO, ....NO,
you CANNOT understand what it is like. Be thankful you do not really understand
and please do not judge me. Sometimes, I get scared, sometimes, I get mad,
sometimes I do over react, and sadly, sometimes, I let me guard down. I am
human and I am permitted to feel every emotion humanly possible regarding
something that dictates every day of our children's lives. That being said, I
am always grateful for everyday with our little ones.
Perhaps I can help you see my point of view a
little better? Please, let me break it down a little further.
At a party with little children in attendance
would you ever put pretty colored kool-aid out on the kids table and then right
next to it place a colorful bottle of toxic cleaner?
Would you ever create a cute hot chocolate bar
and decorate it with bowls of marshmallows, chocolate chips, whipped cream, and
place it beside a little bowl of arsenic rat pellets for the little innocent
and trusting children excited to create their own yummy treat?
Remember both the children are allergic to eggs;
"anaphylactic" to eggs? Now, is there really
a difference between the cleaner next to the kool-aid, the arsenic rat pellets
for the cocoa and a beautiful display of delectable treats of safe foods
sitting beside a platter of quiche for my children?
Help me understand the difference. For my boys
the cleaner, the arsenic, and the eggs are all poison. ....but I am supposed to
allow "everyone else to live".
I am not asking the world to give up ice cream,
cookies, goldfish crackers, or nuts! What I do ask is that the world be
considerate and that they have their children sit down to eat in a designated
place & consciously wipe their little hands afterwards.
I am asking that someone give me a list of the
foods they will be serving at a party so that I can make safe equivalents for
my munchkins to enjoy.
Yes, it is my job as a parent to educate!!! But,
there are not too many, if any 1-3 year olds or little ones with developmental
delays that understand the seriousness of their allergies. So, perhaps it is
necessary that other parents are more cognizant of their little cherubs
running around with foods that can kill other people's children to ensure the
safety of all present.
We have ramps for people in wheelchairs,
videophones for people that are Deaf, and guide dogs for the Blind. Why is
sitting in designated area to eat your delicious glutinated, egg, peanut,
dairy, soy filled gooey yumminess so that my child will not stop breathing
so difficult? Why when I sweetly explain the life and death consequence of your
child wiping peanut butter or mayonnaise from their sandwiches on playground
equipment is it met with a roll of your eyes?
We all have to co-exist in this world. We all
should be free to LIVE life to the fullest. My children need to
be able to breathe to LIVE their lives- period. I am not asking you to
permanently change your eating habits. I am asking for you to consider my
children when you are out in the world in a shared space. I am asking you to
wipe down your eating area and your hands before touching other things. I am
asking for kind comments and consideration to my children's needs. I am asking
for less resistance when people do educate you on the life threatening
possibility. I am asking that people with intolerances understand that those
are not the same as your child dropping to the ground gasping for air while
their throat closes in front of you- I will take diarrhea and vomiting and
tummy aches any day of the week. I am asking that when parents express feeling
of hurt, fear, or anger, it is not met with more anger or dismissal. Any parent
with a special needs child should be held close while she/he expresses that
deep down behind the anger, is a deep-rooted fear. I am asking for
people to lovingly educate the world and for the world to lovingly try to accommodate
all needs.... and to try and remember what not to say or do.
There, I said it... my angry post, perhaps now
you see behind the anger is a very deep-rooted fear. Buried deep behind the anger is a cry for the most normal life my
children can possibly live, that most have the luxury of taking for granted. Always, always my fear is that my babies
will not survive because people refuse to believe, sacrifice, or
accommodate
this need.
I hope to hear from you my dear readers and I
hope this helps heal your hearts too.
Reminders of why:
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This is our little guy.....
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and this is our little guy after NOT SWALLOWING a sauce made with eggs the same night.
This is our oldest little one. See the hives all over his face (they were all over his chest and back too)? This picture was taken after just playing with other children and not eating something- but, I do not know who ate what before coming over without washing their hands and playing with my child. He was so sick that after the benedrly began to kick in, he fell into a deep sleep at the dinner table at our large family gathering- and missed out on the memories to play with his family and just be a kid.
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