Friday, July 6, 2007

Children should not have diabetes--Our battle with the CGM

I am exhausted. My daughter is six, nearly seven and endures the every three day infusion set changes, the 8 to 10 blood sugar checks per day, but I just endured the longest hold out EVER over diabetes.

I have the Minimed CGM and I upgraded her pump, so she could use it too. Well, today was going to be the day. We went to the Endo and we were going to "give it a try." We have a trip planned to Hawaii and I wanted her to have the CGM with the 5 hour time difference, the constant activity and 12 hours of inactivity during the flights. So much to worry about.

We iced her butt, we talked, we hugged, we iced, talked, hugged, cried, iced, hugged, cried, hugged, hugged, cried, talked, hugged and cried some more.

The damned needle on this thing is LONG. It is freakin' scary, even for me on the first try. On the Navigator, at least you didn't see what was about to be plunged into you.

So we tried again. More hugs, ice, tears, then squirming, then Daddy tries to help. He holds her with a hug and she twists away. He holds her tighter and she cries and twists some more and he gives up. I talk, she cries. I hug, she hugs, she cries and 45 minutes later; totally exhausted and late for a play date, we promise to try tomorrow.

For weeks I tried to convince her that this was going to be a good thing. Less B.G. checks (she says she doesn't mind checking her blood sugar), less worry for me (she really doesn't understand). I talked to my counselor about how to approach this, because she is simply scared it will hurt. My words mean nothing. I had friends with young kids that have the CGM talk to her, email her; she is NOT convinced it won't hurt like hell. Words mean nothing; I can not change her perceptions of what could be.

My counselor said I need to talk from the heart and I did. I told her that I love her more than anything on earth, and that as a mommy who loves her, I have to do everything in my power to keep her safe and healthy. We are fortunate to have access to the CGM and as a mom who loves her little girl, I have to utilizes the most powerful forces in the universe to protect and help her be healthy.

She seemed to buy that; understands that this isn't just about what I "think" is best. But it doesn't changed the fact that she THINKS this is going to be the worst thing ever.

Holding her down and slapping the thing on her butt was what we had to do with infusion sets early on, but it just feels SO wrong to me with my child. I breech a deep trust with her when we have had to resort to that. It has broken our hearts more than a few times.

So I have given her a big job tomorrow, her job is to try her very hardest to use all the tools she has to keep herself as calm as possible. We can't change how she feels, but perhaps (idealistic mommy here) she can help herself be a little less tweaked. Anyway, I am emotionally wiped out. She is playing up stairs and I'm going to go close my eyes.

She cried out, "How did this happen to me? How did I get diabetes?"

What's a mother to do?


Bernard said...

Oh Wendy

That's so difficult for all of you, I just can't imagine how I'd handle it.

Besides ice is there any topical thing you can use to reduce her sensitivity? Or would it help to give her Motrin 30 minutes beforehand just to take the edge off?

From using the Dexcom inserter, I know it's not fun for a few short seconds. I hope she can accept this without too many problems.

God bless you all. This disease just stinks.

Chrissie in Belgium said...

Wendy, it is so much more terrible when our kids have diabetes. I am SO SORRY! I remeber when Eric and Ellen were little I was adamant about their not getting lots of sugar b/c common sense told me that they should not over tax their pancreases. They never became diabetic and for that reason I have always considered my self VERY VERY LUCKY! How do you manage?! ((((HUG))))

Wendy Morgan said...

Thanks guys! You know this isn't about the actual pain, this is about anticipation; not KNOWING what is it going to feel like. You know how it is with infusion sets, sometimes it hurts, sometimes it doesn't. She knows it only hurts for a minute, if it hurts at all.

I was always told that type one is NOT hereditary, that my husbnad and I had a 7-9 percent chance of having a child with diabetes.

This isn't not the worst thing that every happened in our lives. We are so fortunate NOT to have about a million other illnesses or disorders. Diabetes is manageable, but it is these glimpses into the real pain-in-the-ass (literally) nature of the disease that breaks my heart.

Shannon said...

This was sooo heart wrenching to read.

Logically you know you're doing what's best, but as a parent who sees their child being scared, it sucks that it has to be done.

I can totally empathize.

Scott K. Johnson said...

Very touching and moving post Wendy.

Penny Ratzlaff said...

Whew, that post tore at my heart a bit.

Sticking my child with needles is a daily occurance and yet I don't think I'll ever really get used to it. We (parents of kids with D) live in a world where we have to cause our child pain in order to keep them safe. Bizarre if you really think about it. And, sad. Very, very sad.

Jen said...

It is SO much different for you, when you have your own bg to contend with... I appreciate how hard that is for you.
For topicals, you can always get emla cream, but it takes ten minutes to work, which is ten minutes of anticipation.
It is SO hard to convince them to try the cool new stuff.
I feel for you, and love your blog.
Having D and having a child with D is something I cant even fathom. Keep blogging, I am going to link you to our city support site, if that is ok...?

Carey said...

We've been there so many times with site changes. It's just horrific what we have to put our kids through. You sound like a great mom.

sienca said...

why do our children have to get this terrible disease? it hurts so bad sticking your child & hurts worse when they say, mommy that hurt - good mommies don't hurt their children, yet we are great parents because we're keeping our kids healthy & alive! we can't actually hold hands through these trials & hurts but we are in this together. prayers to everyone