My daughter fights an insatiable disease every day. This disease literally tries to kill her every minute of every hour all day every day. We work hard to keep her alive (no joke) and I have become quite the advocate for her. I want to teach her that she can be strong and vulnerable at the same time, that it’s okay to stare this bitch ass disease in the face and say “you fucking suck.” Yeah. My 12 year old daughter says fuck. Go ahead and judge me, I don’t give two shits.
I know I repeat myself a lot on here, but that’s because emotions are always there bubbling to the surface, threatening to make me a puddle of tears right there in the carpool lane. Some days it is something I can feel coming from a mile away, and other days it’s just out of the blue, BAM, all the feels at once.
I had a moment like the latter just the other day. I was waiting to pick up Hannah at school and Caroline had fallen asleep, so I was alone with my thoughts. Lately my thoughts leave me feel very anxious, and so, I hopped on Facebook to help my mind focus on other things. There is this awesome group that I’m apart of called the T1D Modsquad, where I’ve been able to see so many other parents of diabetics, literally from all over the world, come together to support each other when we need it most. I don’t post there often but I comment a lot; words of encouragement and love help us all to not feel alone. This particular day I came across a question that had been posted, asking the other parents if their child complained of the pain of a new Dexcom insertion or if it was no big deal. There were varying responses, but when I went to type my own out, a knot formed in my throat.
First, let me give a little rundown on what the Dexcom is and what it does for us. It’s a wire that is insert just under the skin that takes a reading every 5 minutes and transmits that data to a receiver Hannah carries on her at all times. It’s a very important tool in our tool belt and without it I’d be lost. The insertion takes mere seconds, but, the needle is huge; I’m talking bigger than when you get vaccines, and more along the lines of an IV sized needle. We’ve had some bleed profusely after insertion, some that have hurt really badly, and some that haven’t hurt her much at all. I realized though, that I’ve never really given her a choice on whether she will wear this sensor or not. /instantly I felt like a shitty mom. Here I was demanding she wear this, and yeah I think she likes not having to prick her finger as much to see where she’s at, blood sugar wise, but I’ve never stopped to ask her “do you want a break from this?” When we have a working site up and running (they sometimes crap out on us and we have to pull it and do a whole new one...yep...another big poke) this is what it looks like on my phone:
This was what I was staring at trying to drop Hannah off for school. She has PE first period, and I knew there was no way in hell I'd be leaving her to walk the halls with blood sugar like this. This was after a 12 carb juice, and after that didn't stop thedrop, she had a piece of candy. That's over 20 carbs uncovered. I don't even know how she is still laughing and coherent when she's dropping this fast.
Guys. It’s hard. It’s hard not feeling like you have that control any time the sensor has failed or you’re having to wait for the dreaded 2 hour start up time. You don’t get readings and then you feel lost and anxious and just ready to have the safety net of this amazing technology. Sure, we have Porter and he alerts way ahead of the Dex, but it’s super helpful having those numbers right in front of my face when she’s at school or wherever. Porter is a huge part of why she’s been able to stay safe and healthy these last 2 years, but he is just a team player and one of many on “Team Hannah.” Plus he poops a lot and smells like dog, and the Dex obviously doesn’t, so. Yeah.
I digress. Hannah’s health is important to me, obviously, and I want her to feel like she is supported in all areas of this shitty disease, but again, at what cost? Zero choice of what goes on/in her body? It just isn’t sitting right with me and I’m really scared to bring it up to her. What if she says “actually I’d really love a break from this...it itches and hurts when you have to put a new one in, and I’m just ready for that break.” I’d probably crawl into a hole and cry for a week.
This particular day, in my car, I suddenly became very VERY aware of all that my daughter has to deal with, both physically and emotionally. It's not like I'm not aware 24/7, because I am. There are just some moments that it hits me all at once and becomes an overwhelming emotion, too strong to handle without a good cry. Anyway, I lost it. The tears fell and that familiar helpless feeling creeps in, and I don't like it. I don't like feeling out of control, of anything, let alone my daughter's health. I’d take it from her in an instant but I can’t. The realization that I actually have never had control of anything, ever, in my life comes crashing down and then I just get pissed.
The control freak in me just cringed a lot.
Hannah gets poked and prodded every damn day. Her fingers are calloused and she endures more pain physically than most people I know, including myself. I realized that the idea of inserting a Dexcom sensor into my own fat arm terrified me......a woman who’s had four kids and will watch as I get my blood drawn. Not much affects me, as far as getting poked with needles, but I don’t necesssrily love getting blood work done either. Thankfully it’s usually a once a year thing and I’m able to relax and forget about it.
Hannah doesn’t get that option. She gets poked every 3 days for site changes, pokes her fingers to check her blood sugar, and if she’s sick it’s even more pokes to check ketones and all that. I have to ride her ass to make sure she stays hydrated, and she hates that (okay so that’s not painful for her) and I get a lot of eye rolls and deep sighs when I ask “how much water have you had today?”
She has done this for four years now. It’s her new normal. It truly upset me that I couldn’t bare the thought of injecting a Dexcom sensor into my arm, yet I was doing it to her on a regular basis. It felt so unfair, but really diabetes doesn’t play fair.
Between Porter and Dex, her A1c has been fantastic. Her doctor is pleased, and I am thankful that she is healthy and thriving. There are lots of positives to wearing the Dexcom, and I think she’d agree with me when I say it’s worth it, but I know she hates the pain.
We want a cure so badly. We want our kids to be able to live their lives without having to think about every little thing that goes into their mouths. I want to be able to stop hurting my daughter just to keep her alive.
It won’t happen though; not any time soon.
Until then, we just keep fighting. She handles it all with such grace and fearlessness, and she teaches me to get back on the horse when we’ve both fallen.
This girl is a champ. She’s a bad ass. She’s my hero. I want to be her when I grow up.
I know there will be more rough days ahead and that I will throw my hands up and ask God why her? Why did she have to grow up overnight? Why does she continually have to endure this complete fuckery that is diabetes. One day maybe I’ll have answers, but for now we just have what we know in the moment; there are blessings to be found in the darkest of trials. As long as we keep putting one foot in front of the other, we will be okay.
I love her. She is the epitome of honor and strength and you all should be jealous that my lady parts gave birth to her 12 years ago.
I made that. It’s one of my biggest accomplishments in life; always will be.
This Katniss costume was a last second idea, and when I saw her all decked out tonight, I had to take a step back. She pulls it off perfectly, archery loving and all.