1.23.2011

on my mind

In the hopes that I might get a little sleep tonight I thought I'd put my thoughts to paper, uhh, screen.
When I was in beauty school I worked on a LOT of older women - they were my main clientelle. It was fun to talk them into color or a new haircut; most wanted a new do and it was fun to give it them. There were a few, though, that I just didn't get. These were the ones that came in for a shampoo set week after week with nothing to talk about but their ailing health. They were the ones who didn't wash their own hair because they couldn't lift their arms over there heads in the shower and didn't dare lay down in the tub incase they couldn't get back up. As much as I tried to steer the conversation away from their health problems, it always came back to that. I thought, "does this lady have NOTHING in her life besides her bad health?! Can't she think of ANYTHING else?"
I understand now. When you have bad health it IS your life. It's not that you have nothing better to think about, it's that it's all you can think about. It is what you are, it is your lifestyle, it just is the way it is.
...
The words, Severe Food Allergy, don't get the same reaction from people as diabetes, or such and such syndrome, or cancer. But for me, the words have the same meaning - a "disease" that has to managed, and dealt with and lived with. Something that can become, and sometimes is, debilitating. Something that could ultimately take my boy's life.
I have great empathy for people whose children suffer with life-threatening illness, people whose children are confined to wheelchairs, people who have to give their kids around the clock care, people who try to give their kids as "normal" of a life as they can have. From the outside looking in, no one would think of me as a mom with a kid like that... and I am grateful that my son's issues are quite manageable. But when I see him scratching his skin, all over, until it bleeds, when he starts panting and asking for benedryl, when his lips swell and he gets hives around them and in his eyes, I just wish people knew that he DOES suffer and THIS IS A BIG DEAL.
I have a nagging feeling that no one would question me if I said Austin had diabetes; people would make an effort to give sugar-free snacks, or even non-edible treats for birthdays and class parties, no one would think twice about not giving a diabetic child candy.
...
Yet, no matter how I say it, people don't seem to understand. His teacher let someone bring a jar of peanuts to be served at a buffet. More than one friend, has given out PBandJ's or even handfulls of pistachios and almonds while Austin was there. I've picked kids up for carpools and they've brought their peanut butter and jelly in the car with them. "sorry, it's all I had." they say. I understand. Who am I to say what someone can or can't feed their kid. All I know is that I panic every time Austin is around nuts. And I panic at people's indifference and lack of understanding. And I flashback to seeing his unconsious, blue little body at 2, after an anaphalactic reaction.
Everytime Austin leaves the house, I send him with his own food. Before a birthday party, I call the mom and find out what she's serving. I try to make the same thing for him to bring - so he gets to eat what they're eating and still be safe.
On this day, I called the mom, explained the allergies, told her Austin could only eat his own food, asked if peanuts would be served, asked if she could have the kids wash their hands after ice cream. It's hard for me to do that, becuase I feel intrusive and annoying. But if they saw him after a reaction they'd understand. She didn't understand. She said, "gosh, good thing {her son} didn't want to have Rocky Road!" In a rush I think: he's not safe there, she's annoyed that I'm making this a big deal, people are going to stop inviting him because it's too hard to worry about handwashing and what food is safe, I should teach Austin to use his own Epi-pen, no. still not old enough, do I tell her about that now too?!..." I give a courtesy laugh, hang up the phone, and start crying.
It's hard to find a balance, even here at home, with living a "normal" life and paying attention to what's in the food we eat, and even what we don't eat. I picked up Landon from scouts the other day and he jumped in the front seat with a bowl. It had pinecone bird feeders in it, that they had just made. He had peanut butter smeared on his shirt and pants, the peanut butter smeared strings were hanging over the sides of the bowl, his hands had peanut butter on them. I wanted to make him get out of the car, walk home. Instead I calmly got out a napkin, told him not to touch anything. We hung his feeders up high in our tree and threw the bowl in the garbage. He went in and took off his clothes and put them in the washing machine. We washed our hands. I wiped down the door handles to the car and the house.
After Young Women's, the other night, I was cleaning up. There was extra cake (it was Costco - I LOVE Costco cake - the filling is like bismark doughnut filling). We were putting pieces on plates for us to take home. I said no thanks. Of course everyone said, "Come one, just take some." They think I'm trying to be nice or something. Really I don't want it because when someone offers me food all I can think is, "is it safe for Austin? Do I have something similar to give him? Do I have time to make something?" I can't bring it home because...well, how would you feel if everyone was eating cake and you couldn't have any. It's just easier to make my own that Austin can eat.
...
Managing food allergies has been a big adjustment for us. And it continues to be. Austin has been having other reactions lately. He tested positive for wheat allergy. The allergist said not to worry about it because it was such a low positive. But then he started having symptoms. I live in a city with NO health food store - in order to buy the ingredients I need to put him on a wheat,peanut,and dairy free diet I have to drive 55 minutes (one way). It's hard to fit that in because I have 3 kids with 3 different school schedules, and going at night after Cameron gets home is hard too because I barely can get there before the store closes. So, I try to organize and figure out ways to make it okay. I've heard of all the new research, we haven't found a doctor that's willing to try to desensitize Austin, yet. I've heard of chiropractic therapy to help. We'll see. For now I have to get his allergies under controll. That means, figuring out what's causing his reactions, that means restricted diets, that means I really have to organize and plan meals better. I'm overwhelmed by it all, to be honest.
...
One thing I have discovered is a great shake recipe - it's one of our favorite breakfast/afterschool snacks:
in a blender (I use a Ninja, that I love, thanks Mom!) put a handful of spinach (yes, spinach, you won't taste it, I PROMISE!), a cup of yogurt (we use SOY) a couple handfuls of frozen fruit, some grape juice (grape or fruit punch is best because it hides the green spinach color - but we've this with OJ and it tastes good too), and some soy milk to make it extra creamy. Mix it all together until it's smooth and you'll kids will ask for it everyday, especially if you give them a straw!
...
I just love Austin. He's happy and energetic. He is such a good helper. He's a fort building, stuffed animal loving, book reading, ball bouncing, couch jumping, great kid. He is dependable and responsible. He is hillarious. He has a great ability to sense what someone needs and to do it. He is always trying to make someone happy. He handles all of this very well. He's learning to ask, "does this have nuts in it?" instead of, "can I have this?". He's careful about handwashing. He's excited to bring lunch next year when he finally gets to have a full day at school - another thing I worry about, since the school won't go peanut free. And so the circle continues, maybe it does for every mother, the worry...
*edited to add: The comments I've recieved have reminded me that I have so, so, so much support from so many friends and family. And for you, I am grateful.

17 comments:

csmedley8157 said...

My Sweet daughter, I want to be the mamma bear for you and fight the fight for you. You know me. Please call an attorney. So many times when you kids were little I would get a letter from the school and I was told not to bring anything peanuts or nuts to the school. This is a matter of life and death. I never rolled my eyes, discussed it with the neighbors or the like. It is only common sense. I only hope that anyone who has been so insensitive to that wonderful human beings needs can figure out that they are so very wrong. I have never enjoyed the age group of moms you are in because not enough of them have lived through the kinds of things that make the majority of woman daughters of our Father in Heaven. The kind of caring and concerned woman that choose the “better part” rather than be so unkind as to say what they say. It does get better as enough people grow up and realize they do not have all of the answers, in the meantime be brave and strong for Austin. You are his advocate and his mother and you are doing so good and I am so proud of you. And for all of the friends of yours who are supportive, I just want to thank you for being there and rooting for your friends. Wow!

Jenn S said...

Oh, Kendra....I am so sorry you have to go through this. Austin is wonderful and you and Cameron are wonderful parents for him! I am so glad he has such a great mom that takes such great care of him! I also know it's not easy...no one understands completely what you go through day after day after day!!

I will say, that I know you have it hard. Kids who don't visibly have something "wrong" are mistreated far more than someone who obviously has a disability or disease. So hard! I'm sorry! I will keep you guys in my prayers! Know that we are thinking about you!!!

runningfan said...

I'm so sorry this is so hard, Kendra! Reading this has motivated me to be more sensitive to the kids around me who have allergies (and more especially, their mamas)!

shaina said...

Life-threatening allergies are really overlooked. I agree with you. Maintaining a diet, plus keeping away all the transient particles, is more than a full time job. It is very hard. My hats off to you.

Oh, and I worked for a homeopathic chiropracter, and he did allergy treatments all the time, to desensitize. Look into it!

Steph said...

Kendra, I don't know if I've told you this lately, but I really think you are Supermom! I'm so sorry you have to go through all of this, and I will keep you guys in my prayers that you will find something or someone to help with his allergies. I don't know if I told you this but my brother-in-law's friend had ciliac disease for 20 something years and he got accupuncture and now it's completely gone. I don't know if that's even an option at Autsin's age but we will really pray that you guys find an answer to all of this. In the meantime, I hope those girls see this post and learn to grow up and realize how serious of a matter this is. We love you guys so much and will keep you in our prayers!

LCFrohm said...

I wish so badly that we lived closer to you guys to help with the shopping, etc.
you have made me more self aware about how i treat other mom's as well.
i can't even begin to imagine how it must have been to see Austin not breathing. i just just thinking about it.
HUGS to you, supermom!

Emily said...

Kenda, Austin is so lucky to have you for his Momma, you do such an awesome job!
I'll never forget seeing you come home and hearing about your trip to the car dealership and Landon sharing his candy with Austin and him having an anaphalactic reaction on the way home. It scared me to death just to hear you retell it and thinking of it now brings me to tears. I can't even imagion how terrifying that was.
I'm so sorry people are so selfish and insensitive - we miss you guys so much!

shay said...

You are awesome Kendra! What a trial, but you are so good at handling it. Keep it up! I love your example!

Adri said...

Austin is one lucky boy to have you watching over him. You are wonder woman!

csmedley8157 said...

Here is where I am at with calling an attorney. If even one child was threatened by a gun at school, everyone would be up in arms, and people would say such bravado ridden statements like....”If even one child is threatened, we take this seriously! Or a single human life of an innocent child.... Peanuts are just as threatening as a gun to Austin and people can use the excuse that Austin is not in that part of the school, but what happened with Landon is a perfect example, he unwittingly carried a loaded gun into you car with him...

Andrea said...

Kendra, I am so sorry that your community is not more supportive. I would be frustrated and worried too. You have always been amazing at dealing with Austin's allergies, and I can tell you still are. I wish I could help more, but I did want to tell you that I have started to order a lot of groceries from Amazon. You can get rice flour, soy milk, all sorts of gluten and dairy free snacks and mixes, etc. delivered. If you sign up for amazon moms- you get free prime (2-day) shipping for a year, too. Maybe this will at least help you out a little with the long drive.

shauntelle said...

Kendra, you are the most amazing person! I miss you guys and wish we lived closer. I think about you all the time and I admire all the efforts you make to make life happy for your family and especially how you create and preserve memories.

I know our allergy experiences haven't been as severe as yours, but I'll tell you one thing... it really opened my eyes about food allergies. It was HARD to omit milk from my family's diet. I can't even comprehend dealing with the peanut thing.

Be strong and of good courage, be not afraid, stand firm in the faith for the Lord your God is with you wherever you are!!! :)

[S Rizzle] said...

Thanks for reminding us of the dangers associated with peanut allergies. Admittedly, I had been that annoyed Mom before that grew tired of hearing everything is unsafe, UNTIL I met Austin and my nephew started to react to things. It takes a lot for people to realize the severity of an allergy. most of the time the burden of that falls to the family to protect their loved ones. Thanks for shedding light on this for me!!

Jessie said...

Thank you for this post....
I love you to PIECES and I'm sorry for your pain...

I want you to know that BECAUSE of this post... i just took Hot Wheels cars to Porter's classroom for his "treat" for school so that the little boy and girl with allergies could enjoy the SAME TREAT as the rest of the class. Thank you for making me more AWARE!

LOVE YOU!

csmedley8157 said...

Rizzie your comment made me smile. With no condescending at all, your comment is extremely grown up. Thank you for your kindness. And Jessie, you will never know how grateful those kids in the class are that they get to feel like they belong, and how life long that memory will be. Interestingly I bet they always remember that treat, while the other kids will forget. I believe it was that important to them. You are a dear friend, I can tell and you have “chosen the better part.” Never hard to do when we are aware, is it. Thanks you guys.
Kendra’s Mom

Nic@Nite said...

I am always so surprised when we aren't given restrictions on what to bring to school. I assumed it was because none of the kids in the class had allergies, but now I wonder if it is just the teachers who don't pass on the info. I am now going to start asking if there are allergies. Austin is such a great kid and you are such a great mom. Keep trying to inform those small town Idahoians. :)

my4suns2 said...

I really thought that all schools had to go peanut-free. That is a shock to me, but I realized it isn't so here in Texas either. It makes me sad that moms (and schools) don't take you seriously and I hope I was never one of those who didn't...it takes what you did to get the awareness out there and not be afraid of what others will think. I'm thinking of you and your sweet little Austin. Garrett asks to send him emails all the time but I keep forgetting. Tell him hi from Garrett and you keep doing what you're doing. Sometimes issues just need an advocate to get taken seriously and you are doing that for your son. Big hugs and prayers for you from Texas.