Boo-boo Fixer, Chief Cuddler, Religious Teacher, Cab Driver, Head Chef, Sports Organizer, and on and on.
Sometimes moms are called to be a little more. This post is about the "little more" recently added to my life - my role as a virtual pancreas.
About a week ago, my favorit-ist boy in the whole wide world was diagnosed with Type 1 Diabetes. What a whirlwind it has been since.
I've been around a few children and adults with T1D over the years, but it isn't until you are faced with the situation right at home that reality hits you. On the outside, most folks with T1D show no obvious symptoms and live ordinary lives and although you may seem them using meters and strips, you really don't know what it means.
It means your kiddo no longer has a working pancreas. You are the working pancreas, doling out insulin at every meal. Keeping a watchful eye for the moments he might go too low in his blood sugars. Juggling the daily demands with "normal life." And this is no easy task. (we make our pancreas work pretty hard, people)
Let me interrupt here to say that, first, your support has meant EVERYTHING during this diagnosis. Friends who visited in the hospital. Friends who text and call to make sure I am holding it together. Friends sending me Bible verses, bringing Peyton fast-acting carb support. Family who check on all of us and are joining the fight for a cure. Friends who kept Samantha occupied while we were in the hospital. The connections so many of you are sharing with me of other mamas in the same situation as we are, just a little further down the road. The gifts from teammates and friends. Invitations to get us out of the house and back to "normal." This is life-saving.
We've gone through a ream of emotions. Peyton had been stoic and strong throughout the initial diagnosis, but we had a heartbreaking night of cry-therapy where he broke down. He wanted to know "Why me?" I am sure we will face more of those days, and more of the angry moments - but I will say this: most days, we will face everything Ninja Warrior style - determined, hopeful, and kicking T1D's butt by living full lives.
I was given some early advice to take one day at a time. Absolutely true. Every day is different here, and if I start thinking too far into the future - what about sleepovers and class trips? what about driving? what about his health as an adult? - I start to collapse. Worry is the enemy here, lurking at every corner. To keep it at bay, I read verses and avoid the Internet unless I need specific help. Sometimes too much information doesn't help me. Besides, I rather rely on people I know to pull us through, and my own instincts as a parent.
Many of you have had lots of questions about what this diagnosis means. Here's a little Q&A of what I know, which I admit is limited. But here we are, learning and growing.
How did you know Peyton had diabetes?
I didn't! The credit goes to Scott. For about 1.5 weeks, we noticed Peyton was drinking a ton of water and going to the bathroom a lot. And I mean, like, 5 times in an hour. He looked a little pale (who doesn't right now, though?) and I thought he looked gaunt for awhile. But it wasn't very obvious. We don't know how much weight he lost while he was sick, but it appears to be a decent amount. When I look at photos of him from September and then again at Christmas, I saw how much thinner his neck and wrists had become. (Incidentally, since his diagnosis, he as put on more than 6 pounds!) He also tired very easily with his high blood sugar.
How long was he sick?
It was likely coming on slowly over a couple of months. That's our best guess, but I don't really know. It didn't get critical until the week we took him in to get checked, but he hadn't really been himself for awhile. So many things you see looking back, but they weren't terribly obvious at the time. I had noticed he didn't seem to get as excited about things like he normally did. It is so nice to see that part of him coming back.
Does diabetes run in your family?
I think so, but not in either mine or Scott's immediate family. I have a cousin with diabetes, though. Still, doctors believe that viruses trigger the T1D to turn on. I don't recall Peyton being sick at all in the fall, but that doesn't mean he wasn't carrying a virus. It will be hard to say for sure what triggered it in him. But T1D isn't preventable (I understand type 2 is, so be sure to be a healthy eater and take care of yourself!)
How does he get insulin and how often?
Before getting insulin, Peyton tests his own blood before breakfast, lunch, dinner, and at bedtime. He gets an insulin injection at each of these times. He NEVER protests about any of this. Pretty amazing kid, right? He gets an extra testing session now and again if he feels low. He also is tested at school before snack. We hadn't been doing this at home, but I like that we have those numbers to play with in figuring this all out. It is a crazy dance right now - watching his levels go up, come down, and shift when our routine shifts. This is probably hardest for me, as I am trying to find a balance between hovering over Peyton's every move and giving him space. And I was never very thorough at documentation. The doctors tell me that if we are relaxed about this diagnosis and handle it as calmly as possible that this will help. Um, trying...
What about the pump?
Some of you know other kiddos and adults with pumps. We will likely get there, too, if it makes sense. I don't know much about them right now - but I will tell you Peyton wants one. There appears to be a little more freedom in the experience, but first we have to learn how to keep him as regulated as possible. It may be for us, it may not. We are keeping all the options open.
What happens when he gets a low blood sugar?
Have you ever been REALLY hungry and shaky close to meal time? I used to get like this as a kid (these were the days before parents carried snacks everywhere; I swear we never had access to snacks like kids do now!). Peyton gets like this when he is low - the only difference is his regulation method. We need to give him sugar to keep him from going lower in these cases. Peyton can tell you when he is feeling low (and we haven't had super low numbers yet.) This is a step in the right direction. He is very aware of his body and what's happening.
What can he eat?
That's a good question. The doctors tell me he can eat anything as long as we can cover it with insulin. But here's the thing: we are using this opportunity to get healthier. Luckily Peyton loves his protein and dairy, which are great carb-free choices. It's helping us bring his initial numbers under control without enormous amounts of insulin. But pizza and cake and crackers aren't entirely out for him. We will be keeping these in moderation; that's a good thing for us all. I had NO IDEA how many food items we feed our children that are loaded with carbs. It is insane. We are slowly easing into making better choices. But I will say, dinner time takes a long time to prep. (How do people who eat this well all the time do this, especially with kids??)
Is this a lifetime thing?
Yes, it is. But we are incredibly hopeful there will be a cure in his lifetime. You won't believe the things researchers are finding out about this disease, just in the past couple of years. I think we'll see it. I don't know how it will work for Peyton, but that's one of those things I am choosing not to project about or worry about, but rather trust God in. We pray for a cure every night. Please join us now and again!
We came home from the hospital on Super Bowl Sunday. I can't get Russell Wilson's post-game interview out of my head, where he shared how his dad would always challenge him to be better and go for greatness by saying, "Why not you?"
Well, Why not us?
Is there a reason not to hope for a cure? God performs miracles every moment. I know I will have times of anger and frustration and pity because we are dealing with this. But I don't have to stay in the times longer than a moment. I don't want to. We can have hope. Why not us?
God did some pretty amazing things through this process. It would be easy to be angry with Him for this (and Peyton certainly was) but I am not choosing that route. I am choosing to see - see that He allowed Scott to quickly identify the symptoms in Peyton; that He allowed me to start working from home the week before; that there a a few other kids with T1D at his school, which means the nurse is pretty great about taking care of him; that Peyton loves most protein food, so adjusting to new meals hasn't been as devastating as we once thought; that Peyton handled his own meter testing right away - he wanted to try everything himself. He was fearless about it, even though he was sad about the diagnosis.
I am sure there has been more than these examples, but my exhausted brain has failed to remember.
Many of you have asked how you can help. We are pretty tired from our 2 am blood sugar checks ... can you buy us some sleep?
OK, here are some easier ways, since you asked:
1. Peyton is still eating me out of house and home! (I am sure this is only beginning for our almost 10-year-old) Beef sticks, jerky, cheese, and any fun low-carb options would be a nice care package if you want to give him something. Oh, and the kid loves pistachios. Random, I know.
2. We will be walking/running in the JDRF event in Madison of the fall. Be there with us to support the efforts going toward finding a cure. It would mean so much to us!
3. Samantha could use a little extra attention now and again. She has done so well, but I know it is stressful for her.
4. Keep praying, praying, praying. We feel each of these prayers and you are providing us a bubble of protection from fear, anxiety, anger, and collapse. You are giving us perspective.
And we are grateful.