It seems, no matter how hard I try to convince myself and others that we can live like "everyone" else... we cannot. It doesn't make me sad any longer. I don't even know why I try, honestly, to pretend that type 1 doesn't change things for us. It does. It is a fact. It is what "it" is.
While watching Joe gyrate like and electrocuted squid during a game of "Freeze Dance" at a Halloween Party Saturday night, my son's vigor for life reminded me of myself. To the Maher side of the family, it resembled my "mexican jumping bean on crack" dance at Megan and Santiago's wedding this past summer. Joe lives life to the fullest. He immerses himself thoroughly into anything that looks particularly "physical" , "dangerous", or "mischievious".
Parties tend to be difficult for Joe from a blood sugar management standpoint. Not only does he partake in foods that he would not normally consume, but the activity component comes into play as well (an 80% reduction in his basal insulin AND extended boluses are frequently utilized). The said Halloween Party was no exception. Joe consumed about a cup of apple cider, a doughnut, a cookie, and half of a cupcake and then proceded to dance his little heart out. AND. I don't just mean move around a little here when I say "dance". Every hair follicle, eye lash, phlange, cell, and...well you get the picture, was involved in Joe's uniquely constructed gift of movement.
He became sweaty. This is Joe's "norm". After hockey - sweaty. After PE - sweaty. After recess - sweaty. Sleeping - sweaty. Dancing - sweaty. This is not a reliable indicator of a low for Joe. However, the sweat-laden Joe came over to the clown glasses-donning witch, otherwise known as me, to let me know we should do a blood sugar check. He was 113, with a hell-a-lot of IOB (Insulin On Board - based on the time and quantity of the last insulin bolus, the pump software keeps track of the insulin remaining in the bloodstream). No problem, more cider for Joe. Joe resumes with the dancing. I continue to watch Darth Vader and the crew enjoy themselves by spazzing out to the beat then "freezing" as silence took hold.
Fast Forward 20 minutes, give or take ----> -----> ----------> ------------------->
Joe is splayed out on the dining room floor, head in my lap, pale, pasty, sweaty, limp. His blood glucose is a mere 61. Not a shocking low by any means. I guess the 15 grams of juice he consumed 20 minutes prior helped alleviate a larger drop. I am now, once again, a fucking life sized "witch" PEZ dispenser pumping out glucose tabs like the Duggars produce children. Nausea then clouds the picture. Joe is gonna "blow" according to his body language and his complaints. Good friends scurried for barf buckets. Barf bucket cradled, I am hoping the puke-fluke fades. I am not wanting to break-out the "icing to the gums rub technique" or any "Glucagon Mini Dosing" for the party-goers. Luckily the nauseousness subsided. Joe felt well enough to walk to the car. We headed home.
As I tucked the Evil War Lord...ahemm Darth...Vader... Joe into bed. He states in his slightly lisp-kissed sweet voice, "Mom, I over-did myself tonight". I explained to him that I knew how he felt. Vigorous dancing with a full stomach can make mommy feel like "death ate a cracker". Furthermore, I cannot even imagine how a low thrown into that nasty, crap-on-a-stick feeling compounds the symptoms.
The night then delivered highs (up to 403) that would correct and then would skyrocket. Joe woke in the high 380s, with large ketones, before hockey practice early on Halloween morning. More insulin was given, water was pushed, and Ketones were minimal with-in an hour... Joe still wasn't feeling right and only lasted about 15 minutes on the ice before we packed-up and headed home. I don't know if he was fighting something or if it was the continued carnage from the party.
I am beginning to realize that Joe is going to have to work just a "bit" harder for all he wants to "squeeze" out of life. Whether it be fun events, physical challenges, or intellectual hurdles ... life isn't just gonna open up for Joe to just live it. He, and we, are gonna have to work that much harder to reap the rewards. Unfortunately, at times like this I am left with some uncomfortable emotions to deal with. Once again, I find myself feeling a little bitter at the unfairness of it all. For Joe. It isn't a gracious quality. I find comfort that Joe seems to take it in stride and I hope I will continue to learn from the example he sets.
A day-in-the-life of LIVING with type 1.
19 comments:
I am often torn with the "Caleb can do and eat anything other kids do (except peanuts)" and "this takes a lot of work and we need a cure". They are both true, but I feel hypocritical when I am emphasizing one over another based upon the circumstance.
So sorry about the D coaster. You're right. It will continue to take more work. I think I've come to accept that, for the most part. But I continue to be hopeful that technological advancements will continue and things will improve.
That just sucks... I'm sorry Reyna. It hurts me to see all the hurdles our kids have to jump through because of this stupid disease.
I hope you got the "coaster" under control and today is a much better day.
Electrocuted squid, gift of movement, pumping out glucose tabs like the Duggars produce children, puke fluke, your words paint a picture that brings a little levity to this serious situation.Because if we didn't laugh, sometimes we'd scream, right. Sometimes we do anyway. Thanks for writing about what we go through in such a compelling way. Like you, I learn from my kid every day. What else can we do besides keep on truckin.
Oh how I agree, it is so so unfair. Even after 31 years, I sometime rile against the unfairness I feel. But here is the good news. Not every party will be so unfair. Yes, that was a particularly sucky one and I'm not trying to make less of it. But some parties, and some days, will go just fine. And so many days you and Joe won't even think about, won't even feel, the unfairness. I promise you that. And I hope in some small way, that makes the unfair days a wee bit easier.
Thanks gals.
Shannon, I find that the "descriptives" are what keep people hooked and yes, my brain is a frickin' mess.
Karen, thank you. It does help. It seems like still, after 4 years, I cannot quite get the numbers game to comply with parties. You and Joe and all PWDs inspire me daily. Thank you for that.
Oh my gosh, I shouldn't laugh at something so sad, but Diet sprite just came burning out my nose after I read the Duggar comment! Holy crap thats funny! Poor Joe, he's so pickin' cute! It's sad he has to deal with such S*%T! Take care guys! :)
I have ALWAYS been one to say our kids just CANT do it the same. They cant. Party after party, Ive learned my lesson. Bounce houses, trampolines, swimming.....walking blocks on Halloween.....Low, then high. Then high, high, high. The tummy ickies......very true Reyna. Some things just aren't the same for our kids, no matter how hard we try or how much we "know" their needs. Damn Diabetes. Most of it was still fun though!! Right!!??
uughh this makes me want to cry. The only reason I didn't is because you infused plenty of humor into the story-so thanks :) I have gone so long trying to tell myself I'm normal only to fall flat on my face. Now with my daughter whom we keep far away from all sorts of activities since we don't want her mixing with any peanut or egg products, I find that we are one wierd isolated family. We carry emergency allergy medicine and a glucagon everywhere...and because the kids are twins we carry a big ass diaper bag and have to do groceries and shopping not together as a family but in divided shifts lol. Reading your post made me laugh and think about how the important thing is how one feels throughout life. Yes, it may be a struggle-more so than it is for others. But, we can live all out like you and your son or decide to just stay home and hide. Right now my husband is at the park with the kids and I'm at home with some mysterious ketones and migraine. I'm going to just deal with it and when they get home, hopefully I'll be well enough to be excited about cooking them dinner. Thanks to Joe for the inspiration to just keep truckin along :)
Hey Girl. This made me cry and laugh at the same time. It absolutely sucks that we can't just sit back and admire the bliss when it happens for our kids. We always have to be skeptical and guessing what the happiness will turn into. That's one of the reasons why I absolutely hate this disease. I do admire your son for realizing though that his "partying" might have been the cause of the drop. It just means you are doing an awesome job at helping Joe to become a responsible and "well" diabetic. Much love for you and yours. (now where is that diabetes punching bag? I swear, if I made one to sell I would make a MINT!!)
Cor Blimey, woman! You use language so very fantastically! Is there a gap in the stand up comedy world for a crazy D-Mom? Who would dare heckle?!
Sorry the party was such an intense experience. Next time or time after that it'll be better. May the force be with him always ...
I hear that! I know - I want so badly for her to be like everyone else. But the reality is that it just aint so. Hmmm... I feel a blog coming on...
I hope it was mostly fun and you all look "spooktacular" in your garb! You know - he's a smart kid. He'll figure out the balance. He won't sit on the sidelines of life. :)
Great post,the best part is Joe is starting to understand we all have our limits. He may push his limits but he is very blessed to have you teach him and walk down the road with him as well as Dave and Bridget.
Love, XOXO
What a sweetheart. How sucky lows, and dropping fast must feel! I just can't imagine. I'm glad he has you to cradle him, to love him, and to take care of him during the rough days.
Oh, Reyna! You do such a wonderful job of infusing some humor into the sucky situations that D hands you and Joe! I know it probably doesn't help a whole lot, but just think of how far diabetes has come! Diabetics can do all the important stuff...sky-diving, having babies, and whatever else they choose to do. Yes, there is a lot of work involved in making those things happen, but just remember....that extra work makes us appreciate the experiences that much more!
BTW....did you get your hats?
Reyna. For the first time Ellie was "all grown up" trick or treating this year. She went to the door by herself and she said trick or treat and thank you at every single door. She ran strong and big with her 4 year old self...she ran with strength and glee up and down the driveways...her legs hurt, she slowed down, she went low and I shoved the candy in her mouth...trying to get the sugar candy instead of the fat candy (the irony). 70 or so grams of carbs later and 4 damn blood tests in the middle of the dark street later she was still at the lower end and I had to make her ride in her brothers stroller for the last few houses because I was so scared we wouldn't get her back up...I was consumed with the D all night and I have to say, like you...I loved watching her live, but I was very bitter about the D by the end of the night...I'm still a little pissed off tonight. And tired of course...and that's all I have to say about that!!!((hugs))
Glad he made it home safe and sound without puking! Poor thing. Low BG's and bouncing around dancing are not a good combo. :-(
Reyna ..... you speak right to my heart. I WANT to make 'funny' of a situation because I prefer laughter over tears. While MY situations may bring on the water works, coming here and readfing YOUR stories (& Joe's!) make my bladder muscles work overtime.
You have a gift for spinning a tale. It royally sucks about the subject matter, but I guess that is what keeps us all coming back ...... because, sadly, we can all relate.
And support! You are a fabulous pancreas!!!!!
Aw man..Poor Joe. This post made my heart break a bit. I was so glad though to read Karen's comment and feel that glimmer of hope again..for Joe and for all our kids! Joe is lucky to have such a wonderful mama..
Ohhh, poor sweet Joe. I hate those moments - when you realize no matter how hard you try and no matter how most things can be normal ish, they will never be all the way normal. But it can still be done! And you guys are always an amazing example of that!
I loved your description of him dancing - I got a great visual!
Post a Comment