Thursday, February 25, 2010

Crash and Burn

I’ve had a headache for a week. And all these tears aren’t helping me one bit.

Mom of the year here has crashed. She is flat on her face. Lost in her emotions.

It’s all about J.

You know, I blog here every week like I know it all.

Like I got it all figured out and wrapped up in a pretty bow.

But I found out yesterday, that I will never know what my boys go through every day. I will never know their heartache, their fears, and their exhaustion from the day to day with this disease. I thought I was shielding them from the worst of it. I thought I was making things easy on them by doing the bulk of the work for them. I thought that diabetes was just a few seconds out of their day. That I was doing all the worrying for them…

I thought wrong.

Here is J. My responsible, straight A, bright boy. His teachers have always praised him for how ‘mature’ and ‘responsible’ he is. He has always been the ‘perfect’ kid and student. He has always taken his diabetes seriously, he has always tested, and he has always bolused. But this year is he is slowly falling apart. He needs reminders to check. I have to hound him after dinner to bolus for his food. I have to have ‘talks’ with him about taking responsibility for his body. After all, I thought, I have done it all for him up until now…how hard is it to take the initiative and remind yourself?

When he does fall off the wagon, (so to speak,) we have a ‘discussion’ and for the next week he is spot on…he checks at school and I think it all is better now. That the problem is fixed. But then the next week comes, and he ‘forgets’ to check again.

“How can you forget to check? You have an alarm on your pump and on your watch to remind you. What do you do when they go off???”

“I turn them off.”

“And you don’t check?”

“No, I don’t check.”

“Why? Help me understand why.”

“I don’t know.”

It came to a head yesterday. He hasn’t checked his blood sugar at school all week.

I didn’t yell…but I wasn’t kind. I lectured until I was blue in the face. I cried. He cried. All I could get out of him was, “Everyone expects me to be perfect. I wish I wasn’t smart, then no one would expect anything from me.”

“I don’t expect you to be perfect J. I only expect you to do your best.”

“What if my best, is sometimes perfect? I don’t want to do my best. I want to be like the other kids.”

We hugged. We came up with some ideas to motivate him to test. But I was still totally confused. I looked into my boys eyes and couldn’t wrap my head around what was going through his mind.

Until today. I read today’s article from Diabetes Mine…and it was the epiphany I needed.

Now that I have handed J the reigns…he has given himself the greatest gift he could ever ask for…

Freedom from Diabetes.

And I don’t blame him. (Man, it is really hard to type through tears!)

I mean, do you blame him? If you had the chance to sneak away from diabetes, wouldn’t you?

The risk is worth the taste of freedom to him. It is a high to be in control…to forget about diabetes for the day.

I hate that the road ahead isn’t mapped out for us. I hate that I have to live and learn, and that I will have to learn from my mistakes with J to help his other brothers when they get older. I hate that I don’t know what tomorrow holds…that we have to take it all day by day. I hate that I’ll have to pull out some tough love. That when he gets drunk on his freedom, I’m going to have to sober him up again.

This comment from a mother in regards to The Diabetes Mine article really hit me hard:

“Your story brought tears to my eyes as we face similar issues with our son 17 diagnosed at 22 months. Freedom as a drug is a great explanation for it and I never thought of it that way. That is why the artificial pancreas is not the cure, because our children will still not be free.”

My heart aches for my boys.

Until there is a cure, they will never truly be free.


  1. Wow. I'm too emotional today to be reading these posts. Freedom is like a drug. Profound. And fitting. I have heard and read that kids will go through this. To them, the future isn't tangible. It is abstract. They can't see the terrible things that will happen to their body by going unchecked with their diabetes. All kids go through this process but not all kids have the worries our T1 kids do.

    Freedom is like a drug. Drugs are addicting. I guess that's something to remember. As with any addiction, there are ways to manage it. You will get there. It's a new road you are on. But we are here for you. HUGS meri. I love you. Take care.Call if you need anything.

  2. I haven't even read the link yet.........I can't stand this! I wouldn't have thought the kids might be so done with diabetes that they'd want the freedom at whatever cost. You really can't blame them.

    I'm sure you guys'll work through this, but man, what a sucky thing to be dealing with right now. (and I thought high school issues were important)

    We're in for this experience one day, I"m sure, until then...thanks for giving me a perspective to be aware of.

    Keep those toes gripped onto that edge! I'm sending you a mental parachute...hang on! :)

  3. First, you are doing a good job. Second, it's completely natural for kids to go through this. It's ok and you WILL get through it.

    When I caught Kelsey, repeatedly, she would lose priveldges. Priveldges are tied to responsibility around here. Now of course depending on age responsibility varies, but you know what I mean. It was the closest thing I could come to in order to show how serious the disease is. Other than taking them to the local hospital....

  4. What an amazing perspective! Freedom is a drug! I so get that, even though I too have never thought of it that way. I think I actually feel a little of that myself when I am out and about with Jillian (our non T1 child). We were at WalMart the other day - just her and I - and a lady in the bakery section asked if she could have a brownie bite. It was such FREEDOM to be able to say "sure, she can!" without having to think, "well, I dont know - I have not checked sugar yet, and just how many carbs would that thing have in it, anyway??"
    If I feel that way on such a small scale, I can only imagine what our T1 kids feel when they get their own taste of freedom!

  5. Every day I wish I could sneak away from diabetes and I don't even have it.
    I dread this day. I know it's coming. That is why I have tears for you now. Because I know that this day will come for us.

    You are STILL mom of the year to me!! He will figure it out because YOU have taught him well. Just give him a chance.

    Lots of (((hugs))) to you and J.

  6. Faith is like a little seed. If planted it will grow....

    He knows he should be in control, but yet he knows you will jump in and save him if it gets too bad. The thing I keep thinking about though is once the seed is planted on how important it is to take care of it, and there is constant nourishment on that importance, he will always know. You know? He is going to rebel because he is human. One day though he will totally get it becasue he has been taught almost his entire. I may not be making any point is that you are doing what you can to show him and to teach him. He will never forget that. One day he will come to you and thank you for all that hard work!

    Good work Meri. I am sure proud of you and your family!

  7. (((HUGS)))

    You've just addressed one of my greatest fears.

    I'm so thankful to have you to share this journey....whatever you need -- whenever...we're here.

    Ready to listen...and NEVER to pass judgment.

    Love you, girl. Thanks for bringing attention to this very important part of D.

  8. Meri,
    Thank you for putting into words what I can't. We are in pretty much the same exact place with Meg; A1C rising, "compliance" falling, and me not knowing what the heck to do. Being a teen (or pre-teen, as mine is) is hard enough without diabetes thrown on top of it, and it rips at my heart to see her struggle with dealing with it.

    So even though I don't have any sage advice or answers to solve it, know you are most definitely not alone in this. {{{{hugs}}}}

  9. "She’s going to be smug; she’s not going to agree. I know this because I was that mom. I had it all figured out. And look where that smugness landed us. So if that person is you, I don’t want to hear it. But should you ever need support and understanding if you face this, I’ll be here for you."

    Oh how I loved reading those words and how I loved your pure honesty Meri! All of us here in D-Mom land struggle with so many pieces of this disease. This is just a part of it. You are such a great Mom to those boys and approach each of them with such honesty about their diabetes. I applaud you as one D-Mom to another.

    The road for us all isn't mapped, you are right. It's hard to live and learn, and learn again and again and again. It's hard to watch rebellion that takes health of a child and slams it against the wall. It's hard to have a heart ache most of the day, every day.

    What I do know for sure and believe with all my heart is that you, Meri, have the heart, the strength, the endurance, the compassion and the love to see it all through. You have faith that you can help J succeed and learn so that your other boys have a mom now who understands.

    My heart reaches out to you as a fellow D-Mom. I am sending you hugs and love from the East.

  10. Meri I have been through this it is called teenage angst . they hate being told what to do when to do and how to do at this point and age . I remember it well and unfortuately my son had to get really sick to understand he could not ignore his diabetes and it taught him well cause he straightened up after that . Not saying that your boy has to get sick he just is going through a stage and as all teens do . You are a fine mother and there is nothing you can do any different to change him , mother nature will take care of that . believe me when I say that . God bless you dear .

  11. Oh Meri, my heart breaks for you as you go through this. It must be so hard to be steering the ship for as many years as you have been, only to hand it over.

    I hate all of this with you, and no... I cannot blame our kiddos for wanting to forget they have this disease. I go through that every day with Elise, and I'm just caring for her... I have no idea what it's like for her.

    I KNOW you can do this, you are nothing short of amazing. And we will all be here to cheer you on.

  12. Well, I don't think there's anything left to say that hasn't already been said!

    I hate that you have to go thru this. I hate that our kids have to go thru this. I hate D makes life harder. It just plain sucks.

    I'm so new to this. So not where you are right now, in dealing with this, I have no advice...

    Just know that although I don't know why God chose all of us for this life, I trust that HE knows. And I like to think it's because He knows we can handle it - and handle it well. We are strong enough. We are the chosen.

    I love you, Meri! I'm here for you every step of the way and I know I'll be coming to you in 10 years (give or take) and asking for advice! Because you are one awesome D Momma! And don't you ever forget it!!!

  13. Oh, Meri, I know we've just "met," but I'm sending you lots of love and hugs. Jack is my "responsible," "mature" six-year-old, and I have often wondered whether he'll always be this way. I fear not. It scares me to let go and relinquish control, but I know that day is coming. And I know I may face the struggles you're facing now. Thank you so much for sharing your story. Hang in there!

  14. Meri,

    Typing through tears...your words hit every heart string I have. Joe is only not total responsibility yet...but I read him the riot act a week ago for chewing too many pieces of gum (not sugar free) and being irresponsible...and then went into a rant as to WHY we do all the diabetes care that we do...and I am embarassed to say I even mentioned that he could have his legs cut off as a complication if he didn't take care of his are wonderful...hang in there. THESE children and their families will not be free until a cure is realized. I LOVE you girl.


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