Type 1 Diabetes, Motherhood and Control Don't Mix

Yesterday morning at 6 a.m., some rumbling thunder woke my daughter before I could come get her out of bed. I was in the office downstairs and sighed deeply, gratefully, because waking an 11 year old takes about half a century every morning. I usually roll her around, push on her, tickle her and check her blood sugar until finally, after threats of missing the bus, she pulls herself up.

It isn't over at that point, because she has to be physically out of the bed before I can walk away. Her snuggley green blanket and pillow are just too tempting.

But this morning, I heard her sleepy feet hit the floor and she called down good mornings. I replied cheerfully with a reminder to check her blood sugar. A few minutes later, as I take the couscous off the stove for her lunch, I hear her call down.

"Mom. I'm 439." I head for the stairs and She is standing there and I can see she is already thinking of how she can avoid an infusion set change. Such a pain in the neck, and it was only two days ago we changed it.

I give her a shot of insulin for half the correction and change her infusion set, giving her the other half of the corection. She sits down, looking pale and tired and says she feels nauseous. We check her ketones, and of course, they are high. I get her some water, and even a bottled green tea, and tell her its the best medicine we have next to insulin. That if she can just sit tight and sip the water every few minutes, it will help her feel better.

She has about 10 minutes before the bus comes and she says, "I'm okay. I'll take a bottle of water and get to feeling better on the bus." She struggles to put her things in her 60 pound, 6th grade backpack. She looks at the clock, sighs, and continues to stuff. I take her hand, gently pull her up to a standing hug, which she doesn't resist and I say, "Go watch TV, drink water and we'll get you to school late." She relents.

She is in a middle school magnet program for the Humanities and Law for International Studies and really likes school. Missing school for any reason is tough, as every minute in class is crammed with content, but she felt like crap. So, she trudged upstairs, kicked off her rain boots and curled up to watch TV. I implored her to drink. Again, nothing except water and insulin will help, but I know her and she won't.

So the struggle begins for me. Just last night she told me a story about her best friend in theater class the day before. Her friend attended one day of a diabetes summer camp with my daughter and got this awesome backpack, along with all the other families. Her friend's regular backpack broke last week (under the weight of eight classes of books) and she pulled out the camp freeebie to use. In theater that day, her friend had left the backpack open and some girls saw inside and started taunting her, "Ooooo! You got diabetes! Mmmm, girl, I can't believe you got diabetes!" The freebie backpack was labeled inside with "I Have Diabetes" and a list of doctors and phone numbers to call in an emergency.

Her friend quickly stammered, "No, no I don't have diabetes. It is just a free backpack I got." The mean girls kept it up and her friend was left to "defend" herself against the attack.

This story gave me pause. It shook me to realize how fragile middle schoolers are around fitting "in." It made me think, why the hell is this a big deal, but my daughter has told me often enough, that you have to lay low. Anything that sets you apart as different, can turn into a problem. You don't want problems in 6th grade. You have two more years with these growing kids and smooth is the best path.

It upset me that her friend had this reaction, but I know it couldn't be helped. She was being "accused" of having diabetes and the stupid freaking two different diseases have become one in most people's eyes. I get very defensive about the metabolic disorder, T2 and the immunosuppressive disorder, T1. Defensive is what I get. Pissed off really.

I remember being at a loss for words after this story. Delicate lines to dance around when dealing with self confidence and a chronic disease. I think I simply said, "Well, I guess she is lucky she doesn't actually have to deal with diabetes."

So, as time ticked by yesterday morning, which felt like forever to me, her blood sugar was dropping slowly, but she still felt nauseous. I implored her to drink, and she wouldn't, because of course, she felt like total crap. I got angry that she wouldn't even try and this is the circle of motherhood that I wish I could jump out of. I wish I could quit feeling so completely compelled to tell her what to do and expecting her to do it. She doesn't. Not because she is defiant. Not because she is contrary, but because she has her own mind and can think for herself. Her thoughts are often different from mine, which infuriates me (and overwhelms me with joy). Every time I open my mouth, I think that maybe she will really "hear" me this time. It is important. My words matter and can help her, if she would only listen. And it never works. I am a communicator, and my words don't matter.

However, over the long haul, I know my sage advice does make a difference. She makes great choices, does awesome in school, is loving, kind, compassionate and extraordinarily independent. But in the moment of this morning, with pale skin, nausea, all curled into the fetal position, I want her to drink water. I want her to try to help herself feel better. I know how to do it. JUST LISTEN!!

She takes a tiny sip from her bottle to get rid of me. To love me. To quell my need for control.

I relayed this story to a friend at dinner last night. It's been weeks and weeks since I spent time with my friend and she listened to me gap-mouthed. When I was through, she said, "Uhh! I had no idea. You never talk about diabetes. I thought she was doing really well." To which I replied, with realization that I don't talk about it, "This is part of what we do every single day." Many, many days are good, more than we would care for are not so good. It is a struggle that we handle very, very well, but the struggle, the care, the energy to maintain diabetes is constant.

It took my girl about three hours to feel well and see her blood sugars in normal range. She was starved, so I picked her up a fast food breakfast (parental guilt reward for enduring diabetic nightmare) and dropped her off at school. I beg her to take her blood sugar at lunch, and she does, like she does everyday, but really that only happens about 40 percent of the time.

I kiss her cheek and send her off.

Now, here I sit to unload all the layers of the last 24 hours, which mirror that last 27 years of my life and the last six years of hers. There is no sadness in this, I am not depressed or hopeless. I'm very proud of my daughter. Frankly, I am proud of myself. But this is real. The challenge to manage and control so many things that are completely outside of me. The challenge is containing all those layers of love, care, concern, compassion, and frustration; keeping them from containing me.

Time goes by...

It is amazing to me how fast things move. A week just shot by in a fraction of a second and it scares me when I hear things just get faster with age.

I'm a less than a month away from turning 40 and have 25 years with diabetes under my belt. I just went to the eye doctor and my eyes are perfect, except for my need for progressive lenses (I'm getting old, duh). Went to my Endo and spent 20 minutes talking with him about a lot of things. Wasn't a ton to talk about with my diabetes. We made some adjustments because I am running high after I eat a bedtime snack. I need to make more adjustments still.

I don't wear my CGM as much these days, but when I do, I seem to run in really good control most of the day and night, except after bedtime snack.

My daughter on the other hand, has been swinging like a monkey in the trees lately. I made some changes to bolus and basal, but I haven't seen things even out. I am watching the trends and then, *snap* a week has gone by and I haven't figured her out. My only thought is hormones must be raging as she tops 4'6" and 87 lbs at 8 years old.

We suffered a serious loss in the past 6 months. My daughter's diabetes educator left the practice we go to. Anyone with diabetes knows that our doctors don't know diddly compared to the Diabetes Educators. She was really our life line. I would call her day or night and she always had an answer. Perhaps it was many years taking care of diabetes peds patients, many years with diabetes herself or all the training she got taking care of her son with diabetes. She is AWESOME and I can't call her anymore. :(

And since she left, I don't feel connected to that office anymore. I like the doctor fine, she is brilliant and loves my girl, but I feel like I lost my "go to." As time slips by and I watch her blood sugars bounce, I start to feel lost and have no desire to call the office for help. THEY don't know my kid like SHE did. Kinda angry about it still, but again, time moves so fast for me now that I can understand how a grudge could linger for half a year or more.

My months may be gliding by, but that has also served me well. Nights and days of worry over fever and flu, days of lows that just never seem to come up. Super-rubber-ball 400s, then 30s in a three to four hour period; they all smooth out over time. I have found, that if I can stop and hit the pause button, breathe, and look at what is going on , do what I have learned to the best of my ability, that things always seem to work out fine. It isn't the individual blood sugar readings that matter so much, it is what is happening over time.

My last A1C was 7.2 and I was thrilled. I know, we are supposed to shoot for 6.0 to 7.0, but 7.2 made me jump for joy. Remember, I ran high for many, many nights at bedtime, but the rest of my 24 hours in a day I did very well.

Can I make improvements? Always! But my averages are good, I have no complications, I am enjoying my life, I am able to care for my girl AND I can stop and hit the pause button occasionally and appreciate all I have learned. I can live with this without being afraid; I am not afraid.

Three Years and Counting...

Today is the third anniversary of my daughter's diagnosis of type one diabetes.

I was at work when she called me to say that Daddy had checked her blood sugar; I could tell she had been crying. A wave of fear spread from the top of my head to the tips of my toes as I asked her, "What was it, baby?"

She was three, soon to be four and I knew in that moment that our lives were changed forever.

Goodbye

My lovely Mother-in-law died this week. She loved owls and I found this image online,

but couldn't find the artist, or I would credit it.