Tuesday, February 12, 2013

If I ever led you to believe T1 diabetes was easy...

...I'm sorry. Because it isn't easy. In fact, I have learned to cope so well that I'm surprised when I stop and look at all I have to deal with every single day. Stunned. Stunned by how much my daughter has to deal with every day.

Last night I was just too tired to get up and help my girl with a low, but o was awake and worried. My husband got up and took great care of her, even feeding her a completely unnecessary bowl of cereal and fruit with real whipped cream. She was starving at 3:30 a.m.

But at dinner she was 436. This after a long, long conversation on Sunday with her about being accountable for the food she eats and taking her blood sugar at school AND insulin. She is really struggling to keep her diabetes under wraps in middle school. Which means she is really struggling to keep it in control, too. I completely understand, but we challenged her to find a way to do it. She is smart, creative and capable of taking care of herself. So, she proudly told me as she got off the late bus that she checked her BG and got her insulin before lunch. Small victories. Then, she checks at home and she is 436. She burst into tears because she did everything right. Her infusion set was clogged. That doesn't make either of us feel better.

So emotionally, last night was rough. We had middle school drama to attend to and a diabetes triumph with the crashing realization that maybe no one is in control of this freakin' disease.

She was 115 when I went to bed at 11:00 pm, so I thought we were good until she stumbles in low. So this morning, I'm staring at her tired face sleeping and I know she isn't going to get up. She has standardized testing today and has to be there, but she just can't wake up.

I have crashed this morning. How can everything swing so wide in 12 hours? How is a growing girl supposed to manage this physically and emotionally? How can I have so little control over all of this? How can she be SO amazing and balanced and strong with so many obstacles that other kids her age don't face. I am so incredibly fortunate to have such an amazing kid.

I know I'm am a good mom, but really, I wonder everyday how I could do more to help her. I wonder if giving her so much responsibility is hurting her or helping her. She is 12. I wish I could send her to the school nurse so she could help take care of her, but that isn't my kid. She wants to do it herself. I wish I could have teachers gently remind her to check her BG before a test, but that isn't her or her school either. I wish she didn't have amazing field trips 9 hours from home with no cell coverage, so I wouldn't have to tag along.

And I also wish I didn't have diabetes, too. I almost can't write about it in the same post, because it is that big. My diabetes and her diabetes live in two separate worlds, because I struggle to do both successfully at the same time. I'm not "worried" about me. But it is totally there. I use a CGM to keep me from diving off the deep end. That's the best I've got.

I really wanted to post on Facebook this morning (or scream out to the world), "To anyone that I led to believe that managing T1 diabetes was easy, you were wrong." But I can't say stuff like that on Facebook. I don't want pity. But my friends have no idea what I deal with as a woman with T1 and a mom of a child with T1. I make it look easy. No one would ever understand. It is impossible to explain how much energy and spirit is required. None of my friends were up all night, worried all night, for their child's well being. It's just a tuck of the covers, a sweet kiss with a whispered, "Good night, sweetie! Sleep tight!"


Scott K. Johnson said...

Totally not easy, and I can't even imagine trying to help a child care for their diabetes. You d-moms are absolutely incredible.

Sending you both all sorts of well-wishes and steady BG vibes.

Ashley W said...

You are so honest and strong, I applaud you. Truly. My husband has T1, and that's hard enough. We have two small children with unique and challenging needs of their own, and I can't even fathom what it is like to throw T1 into the parenting mix.

I hope your day got better - just know that there are total strangers out there that can empathize with what you're dealing with and are supporting you from afar.

Take care,

Kelly said...

Most of my facebook friends are D moms, so you will find us complaining, ranting and celebrating there with each other often! Maybe you need to join us, it sure helps! I'm also fortunate that my Maddison enjoys the nurse visits, it allows her to escape from I can imagine how hard it is for you when your daughter wants the independance. :( that's a tough one. I'm overwhelmed with my tween right now too, it never seems we are doing good enough, l know. We have seen a lot of missed boluses lately, missed checks, bad sites. This age is sooooo hard!

Wendy Morgan said...

Thanks guys! I'm feeling better. Got it off my chest. I remember as a teenager I had to have a good cry with my mom every so often specifically about diabetes. It helps to vent. I just wish we could have a mini vacation from thinking about it! I appreciate you all!