diabetes camp | WifeMomPancreas

Aug 04 2012

It Ain't Always Pretty...But It's My Life

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….

Tagged ADHD, auto-immune diseases, blood sugars, diabetes, diabetes camp, family, health, kids with diabetes, moving target, type 1 diabetes

Jul 14 2012

1 Comment

It Ain't Always Pretty...But It's My Life

I Got Nothin’

It seems like it has been forever since I blogged!

And to be honest, I don’t really have anything new and earth shattering to say.

There is a lot going on in my life, that is sucking my energy.

I’m not ready to share it all yet, but it is good stuff.

Medium is still coming out of his honeymoon and that is not good stuff.

It makes managing diabetes more difficult, and I don’t like difficult.

Medium leaves for diabetes camp tomorrow.

That will give me LOTS to write about, I’m sure!

So, I’m sorry that I have been silent.

I promise to be moved to write soon.

Tagged auto-immune diseases, diabetes, diabetes camp, kids with diabetes, type 1 diabetes

May 20 2012

3 Comments

It Ain't Always Pretty...But It's My Life

Did I Ever Tell You You’re My Hero?

Today’s theme: Diabetes Hero

“Let’s end our week on a high note and blog about our “Diabetes Hero”. It can be anyone you’d like to recognize or admire, someone you know personally or not, someone with diabetes or maybe a Type 3. It might be a fabulous endo or CDE. It could be a d-celebrity or role-model. It could be another DOC member. It’s up to you – who is your Diabetes Hero??”

All of the above.

Really.

I am almost 4 months into my journey as a mother of a child with diabetes, and I can ‘t believe how many amazing new people I now know because of it. (And some people for whom I have known a long time but now have a new-found respect).

We have an AMAZING diabetes educator. I wish I could just keep him in my pocket and reference his brain whenever I need to. Medium’s pediatrician and endo are awesome too. All of the staff at Children’s Mercy Hospital are at the top of their game.

Medium’s school nurse has gone above and beyond in making me feel at ease while he is at school all day long. His teacher, the principal, all the school staff have rocked.

A woman, whom I had not met in person until today actually, hooked us up with a scholarship for Medium to go to diabetes camp this summer. How awesome is that?

The women of the DOC that I have met this week alone through Diabetes Blog Week have been nothing short of inspirational. And not just the one’s who have multiple children with T1D and husbands with cancer and other children with horrible diseases besides T1D, all of the women who are brave enough to put their inner-most thoughts and feelings; the good, the bad and the ugly, out there for the whole world to see and learn from.

My sister-in-law who, although she has lived with this disease for close to 40 years, doesn’t let diabetes define her. I have known her for twenty years and only in the last 4 months have I realized what all she has had to endure. And things are so much easier now! Even though my own sister-in-law has T1D, I never knew how serious or complicated it was because she made it look easy. It is a part of who she is, it is not her identity. She is a very creative, artistic person and is a great writer. She has always worked in publishing, and now she works for the ADA. She is a huge advocate for diabetes and is an amazing role model to Medium of what it looks like to live with type 1 diabetes. (Plus she doesn’t make me feel bad that I don’t change the lancet on the poker as often as I should!)

My mother-in-law, who went through everything that I am going through, 40 years ago when they used pig insulin and didn’t have glucometers, and didn’t even know what a healthy blood sugar was. I know that if she was able to raise my sister-in-law to be the smart, creative, kind, successful person that she is with virtually no tools to help her, then I can certainly do the same now with all of the advanced technology out there.

Everyone who gets up every morning and goes to work or school, who cleans their house and does laundry, takes care of their kids, runs corporations, plays professional sports, contributes to society and doesn’t let this disease tell them they can’t.

But most of all, my Medium. He does not complain. He does not ask why. He counts his carbs. He gave himself shots. He sticks a needle in his finger 10 times a day without so much as a whimper. He knows how to navigate his insulin pump. He gets A’s in school. He plays soccer. He plays basketball. He plays football. He loves his dog. He tolerates his brothers. He hates taking showers. He loves peanut butter crackers. He gives the best hugs. He is 10 years-old and is scared about what diabetes is going to do to his life.

But you wouldn’t know it.

He is my true hero.