10 Things I Hate to Hear from My Diabetic Daughter (and 10 Things I am Looking Forward to Saying Someday)
We are getting very near to the date of my youngest child's first "diaversary" (anniversary of the diagnosis of her Type 1 Diabetes.) I'd like to say that I am just now starting to think about how diabetes has affected our lives, but in all honesty, I think about it every day. Many, many times each day. You probably know this because I talk about it all the time. It really is quite consuming.
I don't mean to get depressing, but here are a few things I hear my daughter say that just make me sad. My heart really drops. She's 8. I hate that she has to deal with pain every day - physical and emotional. She does not say all 10 of these things in a day, but probably 8 of the 10 I will hear at least once in a week. But then, be sure to read on, because there is hope at the end of this post.
1. Darn it! I didn't get enough blood out. Now I have to prick my finger again.
Really, why should anyone's child need to make herself bleed? Her fingers are a mess. The finger pricks are actually much less dreaded than they were the first few months of diabetes, but she still hates it, and bargains with me to put it off when we can. The worst is when she pokes her finger and doesn't get out a measurable amount of blood. So she has to do it again. Very stressful.
2. Do you have to change my pod now?
We have found the insulin pump to be a much more effective way of controlling blood sugar than the shots we were giving. But the pod that holds the insulin only lasts about 2 days for her, and she does not look forward to getting that injection every other day. Especially if we have to do it while she is awake.
3. Today's a Dexcom day?
The Dexcom is her Continuous Glucose Monitor. It is a device that has a needle injected into her skin to take constant blood sugar readings. (Because it can be less accurate than ideal, we still need to do the finger pricks too. The Dexcom just gives us a good idea where her blood sugar is heading (high or low) and to what degree. Whereas her insulin pod is an automated injection, I have to insert her sensor for the CGM manually. Since I only have to change this once a week or so, (and we have only had it a few months), I am really not that good yet at inserting this flawlessly. And apparently, it hurts A LOT. (Especially to a little girl with Sensory Processing Disorder.) When I mess up and have to do it again, I feel just sick to my stomach. Even when she's sleeping, she cries in pain. Moms don't like to hear that from their babies. Especially from something they are doing to their babies.
4. Can I have a cookie?
If it doesn't have a carb count, then no. I am finding that cookies are the worst because they can vary so widely on grams of carbs. (Note: Diabetics of both types count carbs, not sugar. Sugar-free really means nothing to them.) We do have a fantastic scale that can tell us carbs on certain foods, but if we can't look up a carb count or make some kind of reasonable estimate, then we have no idea how much insulin to give. We can't risk giving too much or too little in a body that only weighs nearly 60 lbs.
5. Mom, I must be high. I'm SOOO hungry!
This is the meanest trick of diabetes. When her blood sugar is really high - when she really can't have something to eat - then her body craves food. We try to get around it with 0-carb foods, but apparently that doesn't cut it. I don't understand this, but it is totally not fair.
6. Where's my <insert one of many supplies we keep track of… meter, test strips, wipes, Dexcom, PDM, etc….>? or Did you remember to pack my… (see above)?
There are just so many things to think about when leaving the house. There is one little machine that controls her insulin pump - so that must go with her everywhere. If it gets left at school, we better get to the school before it closes! And don't even think about it ever getting lost somewhere. Out of test strips? That's a problem. No spare insulin pod? That's a problem. No fast acting candy for low blood sugar? That's a problem. Forget any of these when you leave the house, and you have to turn around and go home. One time, I had her bag all packed for church - and I left it on the kitchen counter. Yep, you guessed it. We had to leave church and go home. Last week at the pool, her blood sugar went down to 27. It doesn't get a whole lot lower than that before you need to do the emergency glucagon (concentrated injectable sugar to bring her out of a coma) shot. And I did not have the glucagon with us! Must have everything, everywhere.
7. Mom, I have a headache.
She gets these a lot. They happen when she goes from really high to really low, or some other big change. We are blessed that ibuprofen has worked well for her, but until it takes effect, she can't take noise, or light, or movement. It's just no fun.
8. But I don't want to sit out! My friends are having fun in the pool!
I don't know what it is about the water, but we have found this summer that anytime she goes near the pool, she goes low. So of course, if she's low, she needs to sit out of the activity until she goes up a little. And she's the one of my three kids who most likes to be in it, so sitting out is like punishment.
9. I think I'm going to throw up.
This is when things are really bad. If her insulin pod is not working, and she does not get insulin at all, all the bad stuff will build up and make her feel very sick. That was the trigger that actually led us to the hospital last year. She was vomiting without relief. Now, sometimes, it could be a stomach bug, but that is not good either. With no sugar left in your body, and no stomach to keep anything down… well, that's just a scary place.
10. Please take me to the hospital!
She has only said this 3 times since (and including) the day of her diagnosis. But she knows about the hospital. And she knows it has to be really bad to go. If she is asking us to take her to the place where she was poked and prodded endlessly until she couldn't remember anything more, then she is really sick. And Lord help me, I never want to go through that again with her.
Phew. That was a rough road. So, I like to think ahead. We are extremely hopeful about a new vaccine called BCG (not a new vaccine, but it is still in trial for treatment of Type 1 Diabetes). With it, we are hopeful that my child will not suffer from this disease after high school. Very, very hopeful. And when that happens, I CAN'T WAIT to say these things:
1. Go ahead and eat!
Especially with breakfast foods, we need to let her sit and wait after we administer the insulin, to give it time to take effect. Sitting and waiting is hard for a hungry child to do! She has been so good for us though. If she is not sure if we pumped it in or not, she will sit at the table and stare at her food until we tell her to go ahead.
2. Good night!
Too often our nights are interrupted with the need to fix blood sugars. Sometimes this takes a long time and we need to stay up through the night to do it. I can't wait to sleep through the night without worrying again.
3. Ready to swim?
No taping down sensors or pods and worrying about standing out. Just jump in the pool and go! No need to remember 4 extra bags of candy or the glucagon gun, just in case. And no more staring at my child when she swims to make sure she resurfaces and didn't go into a low sugar coma and drown. She's going to be okay.
4. Let's see if there are any free cookies out at the bakery.
I love my daughter, but I hate taking her grocery shopping. It was always our tradition to stop by and see if the bakery had any sample cookies out. You know what? Those cookies don't have a carb count. And every chocolate chip cookie is different. We don't go by the bakery anymore. But one day, we will go back.
5. So, what's the school nurse's name?
Our school nurses are terrific. I have heard stories about bad ones, but we are blessed. But I just know them too well. We speak at least once daily. And send notes back and forth. It's like when you know the principal so well for having a child constantly in trouble. No matter how nice the person is, you wish you knew them under better circumstances. But you know what? I know lots of nice people. Let's skip a few. I don't need more school officials to talk to every day.
6. Why don't you go to that sleepover at your friend's house?
She has not been invited to one yet, but I know it's coming. She's a little girl. And she's dying to go to one. Right now, I am terrified of it. I don't want to have to let another parent take my middle of the night responsibilities. Especially if that parent isn't familiar with what to do for a diabetic. My child is a pretty heavy sleeper, and she never wakes up to hear the Dexcom alarm her about her blood sugar. So… another thing I don't want to worry about.
7. I've got my tiny purse, and that's all we need, so let's go!
Remember all that stuff we have to take with us everywhere? It's like having a diaper bag again. It doesn't matter how cute it is, it still has to be big enough to hold everything. Man. I had just gotten back to carrying a little purse with just a wallet and a lipstick.
8. Gee it's been a long time since we got a medical bill.
Now, this is not to say we don't get medical bills for all our other various injuries and check ups, but the ones for diabetes supplies are quite costly. I'd sure like to give those up!
9. What's the number on our health insurance card?
Yup. I called insurance so often I know all the numbers- the phone number, the ID number, and the group number. That means I have been on the phone with them enough times to memorize them. And you know what it's like to be on the phone with insurance! (Actually, I hope you don't.) That said, I am grateful that we DO have insurance.
10. Time to go to the doctor. Just a regular doctor. For that ONE shot you get ONCE A YEAR!
Or whatever! I just want my little girl to not have to get any injections on a daily or near-daily basis. I want her to have as pain-free a life as possible. I mean, isn't that the loftiest motherhood goal? We WILL reach it. We will!
I have no idea how many carbs are in that pizza. Or where it ranks on the gylcemic index. Or how long it will take to reach your system. AND I DON'T CARE!
We want our daughter to eat good food. But we don't want to panic when she eats something less than ideal. We want it to all work itself out. We want her body to take care of her again.
Thank you for reading that glimpse into our life this past year. I know it will be a long road ahead of us, but here's hoping that the worst is behind us and the best is yet to come!
Because I love even numbers and lists!