Mom Wants A Diabetes Cure

Wednesday, October 10, 2007

"I Get No Respect...No Repsect, I Tell Ya."

After reading some posts in the past and recently as well as dealing with my own experiences, I've always thought that Type 1 diabetes is the Rodney Dangerfield of childhood diseases, ailments, and other such health issues. It doesn't get the respect I feel it deserves from people we know. Now, there are some friends and many in my family who understand the dire consequences that Brendon lives with 24/7, thankfully. But, for the most part, Brendon's condition really doesn't get much respect at all.

No one really understands it, they see a healthy child running around doing everything any other child does, so how bad can it be?

They typically don't see the world we live in unless they catch me testing Brendon, or pulling out his pump to do a quick dose or cut back his basal to prevent a low. While seeing that, people don't understand what is being done, why it's being done, and what happens if I don't do it.

I take time to explain the whats and whys, especially when I'm ASKED ABOUT IT!! But the words of explaination fade from my vocal chords and I turn around to explain it to the wall, or stoop down to tell it to the grass and dandelion weeds because they don't get that glassy look in their eyes when I give the Kindergarten version of what Type 1 diabetes is. They stay to listen. They don't walk away either, as I've had happen time and time again.

Playgroups were notorious for disrespect:

"Oh, can Brendon have that cupcake? I know I should've asked before I gave it to him, but I couldn't resist holding it back while the other kids ate." Oh, it's OK, he'll just have kidney and organ failure due to the excessively high blood sugars if a situation like that is constantly repeated. Thanks for asking though!!

Or I'll ask: "Uh, do you have the packaging for the juice pouches the kids are drinking? I need to know the carb count so that I know how much insulin to dose Brendon for."
"Oh yes! I'm sorry, but the box is out in the trash can in the garage under the piles of dirty diapers. Sorry! I didn't realize." (said by someone who I asked time and time again at each playgroup and who never seemed to serve the same kind of juice twice.) And so I'd resort to the humiliating task of rooting through the diapers to get to the packaging and make note that "Michaela" ate A LOT of raisins that day.

I sat back and let the moms talk about "Suzie's" diaper rash everytime she ate grapes. And tried not to get the glassy eyed look when I had a mom talk to me for hours about how "Nancy" has to go to Children's Hospital too!! Why? So she can see a specialist about two eyelashes in her right eye that instead of growning outward, grow inward and have the fascinating abililty to grow INTO HER EYEBALL! Can she go blind if not treated? No. Well, so much for drama.

I nearly throttled a mom when she gave Brendon an apple to eat after getting fed up with an "argument" he and I were having about when he could eat it. I was explaining to him that he had to wait until we got home as he was still on Humalog and NPH and you know how it goes with the timing of meals. This mother took the apple out of my hand and said, "Oh, just let him eat the apple!!!" and proceeded to give it to him. I shot her some evil eyed laser beams that burned her ugly contorted face off. I turned on my heels and walked out with all three kids in tow. I was so angry I wasn't sure what I'd do if I received a glassy eyed stare if I told her why I was witholding the apple.

I got fed up one day when a mom named "Liz" was telling us all a story about how "Johnny" was allergic to yet another fruit and gets a rash around his mouth when he eats bananas. All of the "oohs", aahs", "tsks", and holding of "Liz's" hands and concerned pats on her back was almost too much for me to take. At this particular group, we had a potluck lunch. Each and every mom brought in the ingredient list and phone numbers for the manufacturers so that "Liz" could have every bit of info at her finger tips to see which potluck item had offending ingredients in it.

I had been going to this group weekly for a year and they KNEW I counted carbs. Did they include the nutrition charts? No.

So after hearing about the said banana rash around the mouth story, I piped up about Brendon's trip to the ER where he was first diagnosed.

I made sure that not a glassy eye was to be had by these mothers.

I immediately started with "If we hadn't brought Brendon to the ER when we did, he could've DIED either that night, or at the very best, he would've only held on 'til the next day."

You couldn't hear a pin drop. I hooked them. They were listening! They continued to listen about the trip to the ER, what happened in the ER, and the subsequent 7 day hospital stay. Not only that, but they listened, they really listened, to the whats, hows, and whys of what went into Brendon's care each and every day.

If I had to resort to appealing to their morbid curiosity to get Type 1 the respect it deserves, then dagnabit, that's what I did!

I needed to one up these mothers and I accomplished my task.

I FINALLY set up Type 1 diabetes to get the respect it deserved. Yes, I stooped low by making Brendon the center of a death trap story, but at least I didn't get that glassy eyed stare from anyone. And that's really all I could hope for.

18 Comments:

  • Hi Shannon, I'm new to reading your blog - gotta say, love your attitude!!!

    By Blogger Michelle, at 10/10/2007 8:30 AM  

  • Way to go, Shannon!!

    I sometimes tense up when someone mentions Riley's D because I've had way too many conversations with the walls and grass too. I have to admit I have a chip on my shoulder about it.

    On Gingerbread Day at Riley's school he was sitting next to a kid whose mother kept going on and on about "Oh, he can't eat this and he can't eat that." When the teacher passed out the juice (Koolaid 10 with only 2g carbs per pouch) she piped up (very loudly)and said, "Oh, he can't have all that sugar. Can you bring him water?" I HAD to walk away.

    Then, the first day of school, the same mother was going on about the lunch list and how she didn't like that the teacher had announced that the kids could order ice cream or chocolate milk at lunch because her child was going to want it and she would have to tell him no. Lady, welcome to my life.

    After that, I kissed Riley on the cheek and walked out. I didn't want to make a scene on the first day of school.

    By Blogger Penny, at 10/10/2007 9:18 AM  

  • Thanks Michelle!!

    Penny,

    Brendon's baseball coach's son was allergic to every food under the sun: eggs, dairy products, fruits, vegetables, wheat, bird shit.

    And he sent a list to all of us parents so we knew what to avoid when it was our turn to bring a snack to the game.

    We were like, let him eat dirt...it seems to be the only thing he's not allergic to. What can this kid eat? And I doubt it was serious allergies. Probably eczema or something.

    Brendon is allergic to shellfish and vomits...therefore causing lows. But damn, I'm not going to go on and on about it.

    By Blogger Shannon, at 10/10/2007 9:26 AM  

  • I can't believe people are so insensitive...and SO incredibly under educated about Diabetes. My mom has it (Type II), so I try to be very aware of things, especially when it comes to the kids. I'D have told all those moms off if I were in the playgroup!

    By Blogger kellyo75, at 10/10/2007 9:58 AM  

  • Kelly,
    I think I should've spoke up more, but I didn't want diabetes to infringe on everyone. Apparently other parents don't feel the same way.

    And the other part is about common courtesy. If someone is speaking, then listen. If I'm boring you to death, then deal with it and avoid me next time.

    Believe me, listening to conversations about mouth rashes, constipation, and biting the dog's tail isn't exactly intelligence enhancing conversations.

    By Blogger Shannon, at 10/10/2007 10:25 AM  

  • You know what? I read this post and got MAD - VERY MAD.

    I'm not PMS'ing either LOL (hey, oops, not ALOL, but just LOL). Anyhoo .... it angers me to no end how this whole disease functions. From what it does to our children internally, to what others perceive it to be. The whole being of Diabetes angers me.

    I guess I'm just in a rotton mood with regard to the D today - but I just wanted to wring those womens necks for you .....

    I'm glad you spoke up. You didn't "stoop down" diabetes - you actually told the truth about it.

    People just don't get it :(

    By Blogger Jamie, at 10/10/2007 12:22 PM  

  • Unfortunately, if you don't make it a big deal, no one else will think it's a big deal. Though I have to admit, even as a non-parent, I am irritated by the fact that another mom would ignore your wishes and give your son an apple. You were right there and you said no! Sheesh, have some respect for a woman's parenting, if not the diabetes!

    I have the same issue with friends throwing away nutrition information, but mostly because no one thinks about it. Allergies are something people are familiar with (and in their defense, an allergy can kill you a lot faster than a high blood sugar), but diabetes is just kinda weird. Counting carbs? Who does that? (Besides us.) When I'm in a situation where I don't know the carb counts and I can't get the information, I just guesstimate. Honestly, most juice have roughly the same carb amount (25 g. for 8 oz.), same with desserts and other foods. If you eaten it once before, chances are you can eyeball it again. Then just keep an eye on things afterwards. Not ideal, but sometimes it's just a safer (and cleaner!) alternative.

    By Blogger Allison, at 10/10/2007 12:30 PM  

  • I agree with what you said, but even just a 4 carb deviation either way can send a little kid way high or way low. I try to guesstimate as little as possible. And being that these moms knew me well, you'd think they'd be a little more thoughtful.

    I'm not comparing allergies and diabetes in terms of which is more dangerous than the other, but if I knew a kid had a health problem, I'd be concerned enough to ask how I could be of help.

    By Blogger Shannon, at 10/10/2007 12:34 PM  

  • Allergic to bird shit. Ha!

    By Blogger Carey, at 10/10/2007 2:09 PM  

  • Shanon - way to go! I really was shocked about the way these mothers nonchalant Brendon's needs!

    By Blogger Chrissie in Belgium, at 10/10/2007 2:46 PM  

  • Shannon,

    Right after I read your post I read Chris'. It's like you guys were on the same wave length this morning.

    In regards to your coach, I just don't get it. Pretty much everything Riley eats affects his sugar. I don't expect others to make special arrangements just for Riley.

    For example, parents bring snacks for soccer and one brought BIG bottles of Gatorade. Riley wasn't allowed to have one. That was just the way it had to be. I'm not going to send out a memo to everyone to not bring any drinks with sugar in them for snack just because of Riley.

    By Blogger Penny, at 10/10/2007 3:03 PM  

  • Penny,

    You are very astute. After reading Chris' post, I thought how much I could relate to it and thought of all the times parents chimed in about their kid's problems when I would talk about Brendon. It's not that I begrudged them the opportunity, I would just like to be heard before being interrupted, you know?

    By Blogger Shannon, at 10/10/2007 3:26 PM  

  • I love the word, "dagnabit"
    ...especially when used by a non-southerner.

    I agree with what you are saying here. Sometimes I feel like the condition is entirely invisible and that no one knows what diabetics have to do or the consequences of inaction.

    Way to be an advocate and educator!

    By Blogger Johnboy, at 10/10/2007 5:44 PM  

  • Johnboy,
    I have some other southern words in my collection of nonsense words.

    By Blogger Shannon, at 10/10/2007 6:48 PM  

  • Most times i do not even know where to start. But i do not like starting when someone asks "can they grow out of it?" This just sets me up on a bad taste right off the get go. But in the same breath it is a great opportunity to teach them about this disease. But it doesnt sink in until the next time they hear about it.
    This is why i want everyone to know Emma has diabetes. It may strike a chord eventually when people see an ad or a donation opprotunity to the JDRF, CDA, or ADA.
    Sorry but my mind us mush right now espeicially after the draining i got today on my blog.
    thanks for that post it toally rocked!

    By Blogger Chris, at 10/10/2007 7:00 PM  

  • This comment has been removed by the author.

    By Blogger Shannon, at 10/10/2007 7:24 PM  

  • Chris,

    Needless to say, the post on your blog struck a cord with me this morning. Hence, the writing of this post.

    By Blogger Shannon, at 10/10/2007 8:00 PM  

  • Shannon,
    Your post made me cry. (That and I have PMS). It made me cry because it's so damn true. It made me laugh, too, because it really is like Rodney Dangerfield. That's an excellent analogy. It makes me sad for Brandon, for you, for all of us type 1 diabetics and the people who love them.

    In the last 18+ years of having T1, I honestly have NEVER make a big deal out of my diabetes in front of others b/c I hate being the center of attention and don't like the focus to me on me, but as a result, almost NO ONE has ever considered it.

    I'm starting to change that. Starting to talk about it. Starting to let it and myself demand the respect and consideration from myself and others that it needs, that I NEED. This is a big shift for me. People are majorly uneducated and ignorant and in my own family the peanut allergies and dust allergies get all the attention and all my diabetes gets is a glare if I eat a piece of birthday cake. Ooh, you can't eat that. Eat these strawberries instead. No one gets it--no one knows the rolls and the butter and the potato they keep trying to cram down my gullet is just as bad on glucose levels as a tiny piece of cake, but I can't so much as glance at a piece of cake in my (extended) family's house without getting hell for it. It really drives me batty.

    Sorry for that rant.

    I LOVE your attitude, too. I'm glad you're advocating for your son and demanding the attention his diabetes deserves.

    My mom had the opposite approach of not wanting to deal with it and not wanting to draw attention to it or make us or herself feel "bad" so we were ignorant and very much on our own (my sis and I, both t1 since childhood) for many years before learning many things. We've come a LONG way, but Brandon's lucky to have a mom like you, and you seem pretty lucky to have a son like Brandon. :)

    By Blogger Amylia, at 10/11/2007 12:27 AM  

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