Tag Archives: kids with diabetes

Diaversary

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Diaversary. Weird word.

What does it even mean?

I’m not 100% sure, but I think it means, “diabetes anniversary”. But, it could mean “diagnosis anniversary”.

Either way, it sucks.

It is not something I’m happy about.

I don’t even want to acknowledge it, let alone celebrate it.

I suppose it’s all about the way you look at things. Glass half full versus glass half empty kind of thing.

I know I am supposed to be positive and I usually do try to find the silver lining in every situation. I am always impressed, amazed, and flabbergasted when I read blogs, articles and Facebook posts from people who are going through significant struggles and they are so positive.

But I just can’t be that person today.

There is nothing good about my son being diagnosed with this awful disease a year ago. Nothing.

For 365 days now, his life has literally been threatened.

Veterans of this disease probably don’t think of it that way. Or they don’t focus on it that way. But I am still a newbie, and right now I feel like I will never be able to focus on anything else.

Every day is affected by diabetes.

Even if Medium is having a good day and his numbers are good, I inevitably read on Facebook about someone else’s struggle with their own or their child’s sugars that day. Or I read in the news that someone has died as a result of their diabetes.

I know it is all about perspective.

Because every day there are also millions of people living successful, happy, meaningful lives, despite their diabetes. Every day there are people posting good numbers or successful sleepovers or trips to the movies. Every day people with diabetes are getting married, having healthy babies, graduating from college, playing professional sports. The point is, they are living with diabetes. And so maybe I will be able to see things differently one day, too.

But today is not that day.

Today marks an event that happened a year ago, that changed my life forever; re-defined the word “mother” for me. But more importantly, my son’s life has forever been changed. He is forced to head down a path that I didn’t choose for him. It is a path that no one would choose. God chose this path for him, and maybe someday I will understand why. But right now, I disagree with God. Right now, God and I are going to agree to disagree on this one.

My oldest son, Large, has started talking about driving. He will turn 14 this year and in Kansas, where we live, kids get their driving permits when they are 14, so it is on his mind.

While I was driving home from work last night and driving by the hospital where Medium’s endocrinologist is, a thought smacked me across the face.

Medium will be 14 one day, too. He will want to get his driver’s permit. He will turn 16 and want to drive someday.

This is one of, I’m sure, many situations that I had not yet thought about. The questions started flooding my brain. Will I let him drive? Will I make him check his blood sugar before he starts up the engine every time? Will I ever let him drive alone? How have other D-moms and dad handled this situation?

It just sucks so much for him. I know that is a pretty immature and simplistic way to put it, but it does. It sucks rocks. Big ones.

Not only does he have to have this horrid disease which has robbed him of his innocent and carefree childhood. But it makes him feel like crap sometimes, he has to stab himself with needles 10 times a day (which if you’re counting and can do simple math is 3,650 finger stabbings since diagnosis a year ago), play dates and sleepovers at other people’s houses are almost non-existent, he has to be tethered to a device 24-7 FOR THE REST OF HIS LIFE, and he can never just live in the moment. He has to be one step ahead of the game at all times. He has to check his sugar, make sure he has food to treat a low, make sure he has his meter and extra test strips every time he leaves the house. He is singled out at school as a kid with a medical condition.

That is no way for a child to live.

It is so not fair.

And besides how worried I am all the time about his long term health and whether or not the life-saving insulin we give him is going to kill him overnight while we are all sleeping, I am so, so sad for him and this life he is forced to lead.

I know he will have as a great a life as possible, because I will see to it. But the reality is that he has type 1 diabetes.

And that sucks.

And so today, on Medium’s first diaverary, I will not celebrate.

Maybe next January 24th I will feel differently.

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Hell Hath No Fury

I’ve had a house guest for almost a year now. He was not invited, and he won’t leave. I’ve been really busy for the last few months so we’ve been able to stay out of each other’s way, for the most part.

But Medium’s numbers have been totally whack lately and it’s all his fault. The uninvited guest, that is.

The other night when we checked at bedtime he was 467……WTH? 467??? Just two hours earlier he was in the 100’s. So of course I rage bolused on him and then checked  him 2 hours later and he was 187. Then I decided to check him again at 3:00 a.m. because I got up to pee.

My bleary eyes watched the countdown on the meter 5, 4, 3, 2, 1…..54.

Blink. Blink.

54.

Get the hell out of my house. I’m so over you, you don’t even know it.

It’s easy to push him to the back of my mind when I am extremely busy. It is easy for me to not get down about him when I don’t have time to think about him.

But things have finally slowed down a little bit in my life and now he is all up in my grill again.

And as much as I want to stick my head in the sand and ignore him, I can’t.

Because my son’s life depends on me paying attention to the rude, ugly, smelly, obtrusive and down-right abusive guest.

So here I sit. Vigilantly watching the stupid SOB.

He’d better sleep with one eye open.

Hell hath no fury like a woman whose child’s life has been threatened.

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A Mother’s Wish

sunrise tree***So….it has been so long since I have blogged that I just found this post that I wrote back at the beginning of December and, for reasons that I cannot remember, I did not post. So this should have been posted on December 2nd….better late than never??? Anyway….

Tonight I met the mom of a boy that is in the cast of Nuncrackers with Large. We’ve know of this boy for a while because he is active in the Kansas City theater community, but this is the first time he and Large have done a show together. Several of us parents were lamenting at how busy life is especially with these theater kids and rehearsals and how most of us live so far away from downtown and the areas where most of the theaters are.  All of us in the conversation were working moms. One of the mom’s has recently gone back to full time work and I was commiserating with her as less than 2 years ago I went from part time to full time too. I mentioned how that was already hard and then Medium was diagnosed with t1d this year and how much I hate being so far away from him every day. So the mom of this other boy sits up and says that her oldest has type 1 and has had it for 14 years. Who knew?  She was asking how we were doing and commented how the first year was the hardest.

I sort of unleashed on her and told her about the downward spiral I took into the deep, dark pit of despair (the DDPOD) right after diagnosis. I told her that what sent me into that pit was reading things, mostly blogs on the internet, and being smacked in the face with the reality of what our life was going to be like and all of the things that I hadn’t yet worried about but now knew to worry about. I told her how I started a blog to deal with my emotions. She told me that she wrote and recorded a song with her son about how she felt. And as she was telling me this it was sounding really familiar. Turns out, we got her CD in the hospital with a bunch of other stuff; poems, books, websites, etc. And her song was one of the things that I just could not listen to in those early days. The words were written inside the CD and I started to read them, but couldn’t even finish. I didn’t want to learn any more things that I needed to worry about. I already knew that I was praying for a cure, but I wasn’t ready to really know what that meant. Because what it meant was that every day for the rest of my life I would hope and pray for a cure so that my son could live a long, happy life with legs that would take him where he wanted to go. So that he could see the world with strong eyes, and have a strong heart to find the right girl. (Words from Renee Austin’s song, “A Mother’s Wish”.)

So I came home tonight and I went somewhere I hadn’t been in a long time. I opened the drawer that held all of those poems, and books and her CD. And I got it out and I listened to it for the first time. And I cried just as hard today as I probably would have if I had listened to it back then.

Because it is true. It is the ugliest truth there is; that your child’s health and happiness are threatened every day.

But I have a different perspective now than I had ten months ago and I wasn’t crying from that same terrified place. I’m not going back into the DDPOD. That was a place where there was no hope.

I am still scared. I am still sad. I still worry every day about my son’s future.

But I have hope now.  Ten months ago I had no hope.

We are doing this. It is hard, and scary and awful sometimes. But we are doing it.

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It’s All Meri’s Fault (ok….not really)

I must stop reading Meri Schuhmacher’s blog, Our Diabetic Life.

Every time I read it, it takes me further away from my own computer.

I read her posts and she is able to nail down my thoughts with her words so well, I think, why do I need to write? She has already written it. And she has written it better than I could. I suppose 14 years of experience as a D-mom has given her ample opportunities to parlay her thoughts into eloquent words, but damn, she is good.

So why bother?

Here’s why.

Because we each have our own story. And as much as it may seem similar to someone else’s, it is uniquely our own.

We just might have an idea or a perspective on something that is just different enough to make a difference to someone.

And I really can’t blame this all on Meri. Part of why I am not writing, it that I am stressed. Way, way stressed.

We have been trying to sell our house for 2 months now. I have watched houses all around mine sell. We have put lots of time and money into updates based on Realtor feedback. We have dropped the price, twice. I have to have the house in pristine condition every morning when I leave for work in case we get a request for a showing during the day. And keeping a house in immaculate condition with 3 busy boys and 2 full-time working parents is about to kill me. And to top it off, we are about to loose the lot we hand-picked to build on. So we REALLY need to sell our house.

And then there is work. Ah work. I will be traveling to Wisconsin for the better part of the last 2 weeks of October to learn how to build, implement and support an entirely new electronic medical record for the very large health system that I work for. I will go back again in November as well. Then I will spend the next 18 months or so working on that. I am not complaining. I am thrilled to have a stable job, and am actually really excited to learn all of this from the ground up. But being away from home and my kids so much is going to be very hard for me and a logistical nightmare. Please pray for my husband.

And then there’s my health. I found out this week that food sits in my stomach for 8 hours before moving on, which is the cause of my feeling like crap all the time. I don’t really know what it all means, I go back to the doctor next week to discuss next steps. And while I am thrilled to have some answers, this on-going pain and nausea really gets in the way of me being happy and productive.

And then there is Medium’s behavior and my inability to manage it. Can I make a confession? Of course I can, this is my blog. I’m ready to give up on him. I’m ready to just wash my hands of him and be done. I love him. I love him more than I can express, which is why I want so badly to “fix” him. But I can’t. I am out of ideas. There are no more tricks up my sleeve. I am waving the white flag. My love for him isn’t enough.

And let’s not forget about diabetes and all it’s baggage. Medium’s been doing great–diabetes wise–, but it takes a lot to manage it and keep him doing great. And diabetes can’t be put on the back burner just because we have a lot of other things going on.

So it’s not really Meri’s fault that I’m not writing. I just don’t have time. With all of this other crap going on, something’s gotta give, and right now it is my writing.

Next is my sanity.

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Would You Rather….

I heard that the new Dexcom G4 continuous glucose monitor just got it’s FDA approval so I went to their website to do some research. Medium has the Medtronic CGM and I hate it almost as much as he does. It is not very accurate and we have not used it since June. We have been managing just fine without it, but if new and better technology exists for my son, I want to check it out.

So, anyway, I watched the little video and then poked around the website some. And then there she was. The woman who made me think to myself, “I would take diabetes if I could have her body”.

Can you believe I actually thought that? That knowing what I know about diabetes and it’s devastating affects on people, that I would actually wish for it?

I was immediately ashamed for thinking it. I have watched what my son goes through first hand and to think something like that somehow diminishes it’s seriousness; makes it like some kind of non-threatening, little “issue” that is not any big deal.

But it speaks volumes about my issues with body image. This woman was very thin, but not too thin, looked great in a pair of jeans and had a very nice, um er, chest area. She was perfectly proportioned.

She was a model and probably airbrushed. But still. I would give anything, even my non-diabetic status, to look like her.

So this got me thinking.  

Number 1: I have issues and probably need professional counseling.

And Number 2: How desperate for youth and beauty have we become as a society? How far will people really go to achieve the ultimate look? If I really could trade my health for that body….would I really do it?

I know you are thinking, “no, of course you wouldn’t”….

But I’m not so sure. (Yes, I know, I need therapy.)

So here’s my question.

What would you give up and for what, if you could? Would you give up your sense of smell for a wrinkle-free face and no gray hair? Would you give up sex for the rest of your life if you could be a blue eyed, blonde bombshell? Would you take on a life threatening, although manageable, disease with no cure, for the perfect body?

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It’s Not Fair, This is Wrong, This Sucks!

I haven’t been blogging much lately. I have been busy, but that’s not really the reason. I tend to blog when my emotions are running amok. And I guess my emotions have been in check all summer. Despite some CRAZY highs all summer, diabetes has been playing fairly nicely at our house recently.

But for the past 3 days my emotions are on over-drive and I just have to write. And I have to be honest here and tell you that I don’t really have the right to be emotional about this one. And it’s not even about diabetes, directly anyway. I mean, a woman whom I don’t really know, except virtually, and have never met or had a conversation with, who lives thousands of miles away, lost her husband to cancer on Monday.

Doesn’t seem like it should affect me at all really.

Except that it does.

That woman and I are connected in a way that I can only share with a handful (okay, maybe a few more than a handful) of people, none of whom are my family members or friends.

That woman’s name is Meri Schuhmacher and she is kind of my hero, although she doesn’t know it, and if she knew how I felt about her, and how I stalk her blog, she would thank God that she lived thousands of mile away and then she would probably call the police!

I have talked about Meri to my friends, family and coworkers ad nauseam. And I have written about her and linked to her blog, multiple times in my own posts. I referenced her indirectly in “Did I Ever Tell You You’re My Hero?”. Gave her blog a shout-out in “I Have No Friends”, and shamelessly pimped her blog out not once, but twice, in “He Ain’t Heavy, He’s My Son”.

Her blog was one of the first ones I found after Medium was diagnosed. And honestly, immediately after stumbling upon it, I wanted to forget I ever found it. I had just fallen into the deep, dark pit of despair (DDPOD for short) and she was my worst nightmare come true. Not one, not two, but THREE boys with type 1 diabetes. I have three boys. The thought of my other two boys developing T1D was more than I could handle. I closed the lid of the laptop faster than a teenager getting caught looking at porn after I read her story.

But I came back, time and time again. Not in the “horrible train wreck that you can’t look away from” way, but in the, “this is the most humble, positive, real, genuine woman” kind of way. I felt a pull to her and her words. She comforted me in a way that people I have known my whole life couldn’t. It was a kind of “she so knows what I am going through” sisterhood that is rare and unique, but vital to anyone who goes through something like a child’s life-threatening diagnosis.  I have relied on her words time and time again over the past 8 months, and she doesn’t even really know who I am. In fact, hundreds of others rely on her wit and wisdom to help navigate the diabetic waters. She is like the Matriarch of the DOC (diabetes online community). She has blazed the path of raising diabetic kids. She’s not the first to do it, but probably the first to be so transparent and accessible to the rest of the world.

About a month after Medium was diagnosed, Meri posted that her husband’s cancer had returned in the form of metastasized melanoma. Over the next six months I watched (or rather, read) her face cancer and life with three type 1 kids in a raw, honest, humorous, loving and faithful way. Despite the dismal statistics of her husband’s diagnosis, Meri championed on as only Meri can. She would blog to the world about her fear and her moments of despair, and then turn right around and announce that she and her family were choosing hope, that there was no other option than to put one foot in front of the other and keep moving forward.

It was truly amazing to witness her fortitude and her surrendering to God’s will in such a dark time.

For the past three days, I have been struggling with my anger on behalf of my friend (it’s weird how I call her my friend when we don’t really know each other, but that is how she makes you feel, like she is your friend).

Unlike so many other couples, she and Ryan were actually in love with each other and best friends. Why couldn’t cancer take someone else’s husband, someone who didn’t really love their husband?

Meri was already dealt the crappy hand of having THREE kids with a life-threatening chronic disease with no cure. Why couldn’t cancer go pick on someone else who didn’t have such a full plate?

Meri chose hope and remained positive, put her faith in God and believed in a miracle. And for what? So cancer could rob her of  precious years left with her beloved and rip her family apart?

And what about the boys? Four boys are left without a father. Meri has to somehow help her children grieve and hold them when they are falling apart. But she has to grieve, too. And what happens when she needs to fall apart? And let’s not forget about diabetes. I can’t imagine how crazy the boys’ blood sugars are right now with all of the stress.

I feel guilty that my husband is healthy and that I fight with him. I feel guilty that I only have one child with T1D. I feel guilty that I don’t have to face this life alone.

I have read hundreds of Facebook and blog comments written to Meri over the last three days. And they all say the same thing. How sorry everyone is. How they wish they could take the pain away. How there are no words.

Yes there are words.

IT’S NOT FAIR!, THIS IS WRONG!, THIS SUCKS! are a few G-rated ones that come to mind.

Watching this happen to this family has made me question my faith. I don’t know why this has happened to them. I know that life goes on, and people eventually pull themselves up by the bootstraps and carry on.

But for right now, I can’t stop thinking about them. And I can’t stop being angry.

And if you can and you feel it in your heart to help financially support Meri and her boys, as Ryan was their sole source of income, please do so through this link.

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Status Quo

Six months. It has been six months since Medium was diagnosed with type I diabetes. (Well actually, it’s been almost 7 months now).

But six months is apparently the magic number for me. I am finally at the point where I don’t think about Medium’s diabetes minute to minute or hour to hour. After six months I guess I realize that we do know what we’re doing and, to some degree anyway, we can predict what his body is going to do.  I haven’t been blogging much lately. Mostly because I’m busy, but it turns out I just don’t have very much to say lately, at least as far as diabetes goes.

Things here at home have been pretty status quo.

Medium’s numbers have been okay, more on the high side, but we have things under control. We had his three-month endocrine appointment the other day and they agreed that he is coming out of his honeymoon phase. We made some adjustments and I think things are going to be fine.

He started school this week too. His teacher seems nice, although she seems a little nervous about the diabetes. But I think she’s going to be great and I think she will pay really close attention and make sure that Medium is okay while he’s in class.

And of course our school nurse is there and she is awesome and everything is running smoothly.

My brother and his family just moved here from Ohio and they have three boys around the same ages as my boys, so Medium is loving getting to spend so much time with his cousins.

My husband and I have even stopped getting up at 3 AM to check his blood sugar. We do a midnight check and if one of us wakes up in the middle of the night to go to the bathroom or something we will check him but we are no longer setting our alarm for 3 AM.

Right now things are just… Normal.

It’s weird.

We have our house on the market right now so it’s clean, it’s picked up, its immaculate and that has relieved so much stress for me.

So right now, at this very moment in time, my emotions are in check. I’m not feeling overwhelmed with thoughts that I need to get out in blog posts.

The house is clean, the kids are back in school, and diabetes, for right now anyway, is behaving itself.

I don’t know how long this will last, but I’ll take it!

I’m sure there is some kind of drama lurking around the corner, and I will be able to fill pages and pages of blog posts. But for now I am signing off.

Until the next catastrophe…

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I Have No Idea What I Am Doing

Wow, it has been so long since I blogged that I had to go back and read some of my own posts to reacquaint myself with my blog!

And boy was I angry a month ago. Wow. I promise to not do THAT again! Well, I guess I can’t promise that, but I will try. 🙂

So, so much has happened in the last 6 weeks. I have just been super busy. My oldest and my youngest and I were all in a production of The Wizard of Oz last weekend. It was so much fun, but man was that exhausting! For three weeks straight I went straight from work to rehearsal.  Fourteen hour days for three weeks almost killed me! Thank God Medium went to diabetes camp during that time and I actually got five nights of uninterrupted sleep! I was so worried about him and what his numbers were and how he was doing and if he was having any fun at all or was he just terribly homesick, that I had to take an Ambien every night to ensure that I actually slept. But then my days were filled with work and Oz rehearsal so the week really flew by! And he had a great time! He did not brush his teeth even once while he was gone, but he had fun! He had fun and we got a MUCH NEEDED break! So I’d say it was a success!

I really struggled when he first got back from camp. His emotions were all over the place and I think he was exhausted. And then there were his blood sugars. They were SUPER high when he got back from camp. I was really feeling guilty about how I was feeling; that it was so nice while he was gone. We could eat food without thinking about what it was, how many ounces it was and how many carbohydrates were in it. The house stayed picked up, there was no arguing between the other boys, there was so much less stress in the house with him gone. Because besides having T1D, Medium also has ADHD and that, sometimes, is harder to deal with than the diabetes. At least with diabetes you know what you are trying to accomplish. It might be extremely difficult sometimes to hit that moving target, but at least I know that I am trying to hit the target. I know that I need to keep his blood glucose between 70 mg/dL and 140 mg/dL at all times. That is my goal. And to accomplish that goal, I check his blood sugar often and then I either feed him or give him insulin. I am over-simplifying this to make my point, which I will get to, someday.

With ADHD, I HAVE NO IDEA WHAT I AM DOING! (hey, look at that, I got right to the point! Not usually my style!)

There is no rule book. When he lies to me, I don’t know if that is him being a pain in the butt 10 year-old or if that is his ADHD. When he sneaks food, I don’t know if that is him just taking what he wants because he is a kid, or if it is the uncontrolled impulses of his ADHD. When we ask him to take a shower and he yells at us and tells us that he’s not going to do that and that we are stupid, is that just him being defiant, or is that his ADHD? And then when we finally drag his sorry butt up the stairs and walk him into the shower and then he comes out of the shower with dry hair and puts on dirty clothing, is that just him being lazy, or is that his inability to focus and complete tasks with multiple steps that is a hallmark sign of ADHD?

The answer is, I just don’t know. And I don’t know what to do about it. We have tried everything. We have punished, we have yelled, we have taken away privileges, we  have spanked, we have tried natural consequences, we have done it all. NONE OF IT MAKES A SHIT BIT OF DIFFERENCE! Which is what makes me think, it is more his ADHD than anything. So then what do we do? Just let him get away with this behavior? ADHD or not, this kind of behavior is not acceptable and should have consequences. So he is either ALWAYS in trouble, or just walks scott-free. I feel bad when he is always in trouble, especially if he really can’t control it, but I can’t stand the behavior!

We have been dealing with these issues all of his life (and for the record, he does take medication for his ADHD). Then he was diagnosed with diabetes and things have gotten worse. Now there are far graver consequences to him sneaking food (one of his favorite pastimes). And for the first six weeks after diagnosis we were waking him up in the middle of the night to feed him because he was low, so we knew he wasn’t sleeping well, so we chalked up his bad behavior to being tired and not feeling well from blood sugar swings of highs and lows. And then, of course, there is the  simple fact that the kid was diagnosed with a life-threatening, chronic disease with no cure. So of course we wanted to cut him some slack.

But it has been six months since diagnosis and we have got to get a handle on this situation. We got the name of a counselor from a friend and I think we need to take him. Not just for us, but for him. Honestly, he doesn’t seem to be bothered too much by his diagnosis, but I know that he might be keeping it all in, or not know how to talk about it.

So we will try this.

Because if we don’t….

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