Today is Diabetes Art Day. Thanks to Lee Ann, I’ve loved seeing the submissions over the last couple of years. I’m really not too artsy a person. I don’t get good ideas so I haven’t participated previously. However, a few days ago, after a really hard week of *trying* to manage blood sugars and being totally lost I looked at my kitchen counter and almost took a photo of the mess. Instead, decided to use that inspiration to participate. Check out the site and take a look at all the others!
We have had a really busy last couple of weeks!
We have a local group of type 1 families that get together now and then. Sometimes with kids, sometimes just moms (and occasionally dads). It stemmed from Diabetes Outdoors and sort of took off from there. We have a facebook group where we can all ask questions, share thoughts, or just be constant support. Last year, a handful of us went to diabetes camp together. This year, I think we had 14 families come along! It’s so awesome to get to build on friendships but even better that we’re also building relationships and friendships for our kids in their own community. They’re all different ages and genders, but they all get to know each other, have get-togethers and know that their parents are all friends.
The following weekend, Bret Michaels was playing at our county fair and we decided to take a bunch of the kids. Parents worked together to get a hold of his manager and they decided to allow a quick meet and greet before he played. As we lined up for a picture he said if anyone needed anything, they’ve got lots of supplies. I responded that the same went the other way, if he needed anything, we’d all have plenty of supplies with us and he said, that’s right, we’ll take care of each other. Pretty cool. He signed autographs for a few kids and generally seemed like a good guy.
Then, last night we went to a Dodger game. I’d won tickets in a drawing from JDRF just a few days before and figured it would be great training for Miss Molly! As we walked into the stadium we were shocked to see a guide dog group was in the same section as us with several of their puppies-in-training! I talked to a couple of the girls and found out that none of them had been there with the dogs before either. We were all wondering how these big dogs would fit, but it worked! We brought a “place” (rug) for Molly to lay on under our seats and she did great. We had to clear out piles of peanut shells that were tempting her (I’m pretty sure she found a few strays to snack on) but otherwise she fit just fine. Although she was in super tight quarters, she was on excellent behavior and twice scooted herself around to reach and grab her bringsel (C was running pretty high for some unknown reason). Without any commotion or having to get up she grabbed it, we responded by testing C and then gave her a treat and lots of petting. She was able to keep her excitement totally under control and stay right where she was. I’ve often wondered how alerts will work in certain situations and this eased all concerns I’ve had. I did take her up to the deck above our seats to get a drink of water and walk her around a bit and I think most people were surprised to see a big dog walking up the stairs. She was such a good girl, I don’t think most people had realized she was there!
I don’t know how to start this other than to say that it’s not an upbeat positive post, it’s negative and scary. I wasn’t sure how/if to share this with anyone else, but keep feeling the need to express the story. That’s my disclaimer.
Molly (C’s Diabetic Alert Service Dog) came home a few days ago. She’d been with her trainers for an entire month. She goes to work with three different super-trainers who work on obedience, public access and scent work in order to make sure we’re on track, see where we need help and give pointers. We picked her up from T who told me this story.
T and a friend took Molly and some kids to a restaurant for public access work. The kids wanted to eat outside, but the adults stayed in with Molly for practice. After eating, they went to the outdoor area to talk to the kids. There was a couple there and the man walked over to tell T that they give money to support a service dog organization. T explained that Molly is a Diabetic Alert Dog and what her role is. The man proceeded to tell her that they had just lost their son to type 1 diabetes the previous week. He died in his sleep apparently from a low blood sugar despite having five roommates in the house. He was 24 years old and using a pump. He asked T if she would bring Molly over to meet his wife, which of course she did. T told me that the woman hugged Molly and just cried on her for quite some time. Molly didn’t budge and just provided this mother with the therapy she needed in that moment.
I can’t imagine how this couple felt meeting Molly. I can’t imagine how it would feel to be in T’s place. She told me that Molly had touched a number of people over the month that she was away, but this was by far the most significant. I can’t figure out how this story makes me feel. Does it scare me? More than I can imagine. For obvious reasons, but also it scares me that I could run into this couple or another just like them and be faced with it in person.
C overheard the conversation and asked me about it later. I asked if it made him worry and he said no because B (our old Animas rep) had diabetes for “a really long time and nothing like that’s happened.” I wish that were enough for me.
This disease is not just about chasing numbers and trying to achieve your goal A1c. It’s about keeping your child (or yourself) alive. It’s praying that everything you’re doing works without ending in tragedy. I know this isn’t an isolated story. I have heard way too many of them. We cannot afford to live in blinders thinking that in this day and age our kids will end up just fine. It’s not a fair to the families who’ve done all they can and who’s kids weren’t ok.
Diabetes is shitty. I’m one of the first who’ll admit that. I would never downplay what a horrible disease it is and how unbearably consuming it is. No matter what activity you are or are not going to do, you have to consider diabetes first. Eating? Test, count carbs bolus… Exercising? Test, eat carbs… Sleeping in? Better set an alarm to get up and test then try to get back to sleep… and on and on and on. It’s exhausting and refuses to be ignored. However, celiac disease is what consistently adds sadness to my son’s life. Celiac disease is what stole normalcy from his childhood and gave him no way to go around it. Sure cake and candy are hard to manage with diabetes, but it’s do-able. Especially as a once in a while treat. Gluten though? Nope, sorry, not ever.
Our school district is in the middle of state testing right now and a recent trend is teachers encouraging sucking on hard candies during a test. No problem. Only C reminded me at bedtime the night before his testing started and we had no hard candies laying around. I told him to see if anyone had extras and we’d pick some up for the next day. He came home and told me he got two Mentos from a classmate and they were his new favorite candy. They were the pink strawberry ones. I excitedly agreed that the fruity Mentos were by far one of the yummiest candies ever. I might’ve even overdone how much I loved them. He didn’t know how many carbs they were and didn’t bolus because he figured it was really low. I agreed with his decision.
This morning, we left a bit early to stop by the market so he could get his own. He came back out with a huge smile and three rolls! He opens the door and says, “I got a fruity one for you, too. They were only a dollar!” I thanked him and said, let’s check the carbs before your test today… as I rolled it over what glared at me that I couldn’t miss? WHEAT GLUCOSE SYRUP as the second ingredient. Gluten. The first thought through my head was that I couldn’t tell him. I couldn’t ruin this. I’d made it worse by agreeing about how good they were. I was crushed knowing that he would be. Of course I had to tell him and watched his happiness fade. I told him I’d buy them back from him, gave him three bucks and sent him back in to get Lifesavers. He said it would look weird to go back in, he’d just skip the candy in class. I convinced him otherwise and he went in. He came out with Lifesavers and Certs. Told me he’d never had the Certs but he’d checked the ingredients. As he popped one in his mouth he lit up telling me they were really good and gave me one.
Now I’m at work with three rolls of Mentos and I’ll tell you, my resentment is affecting their sweetness.
C’s application was approved. He will be receiving a Diabetic Alert Dog!!
This is such exciting news. We’ve struggled for a while now with him having trouble feeling lows and not feeling a hint of a symptom of highs. He craves freedom and I want him to have it more than anything. He’s 12 years old. Yet, sleepovers scare me to death. The idea of him forgetting to test and not feeling a low; not feeling the high that comes from a site accidentally pulling out; the thought of him not having help while he’s out or a friend not knowing how to respond when it comes down to it. These thoughts get to me and it’s hard to move past them.
We’d considered a Continuous Glucose Monitor (CGM). C’s insurance does not cover it so we weren’t in a big rush, but have definitely discussed it many times. C knows that I wanted it. and I know that he doesn’t. He does not like the idea of another site. He hates the idea of carrying another item. He’s already silenced all of the alarms on his pump so that they don’t go off in class and embarrass him… But a dog? He would definitely not resent a dog. He loves the idea of a dog. I love the idea of using a natural resource and tapping into its abilities.
This is the route for us and I cannot wait to start the journey. Oh, that’s right… it’s going to be quite the journey. The organization, Guardian Angel Diabetic Alert Dogs, is doing a sort of co-training with us. Instead of us waiting 1 1/2 to 2 years for a fully trained dog, we will be receiving a brand spanking new baby puppy in January. But not just any puppy, one who has been diabetic scent imprinted, meaning exposed to the scent we want it looking for since birth when nursing. This puppy is bred to be a working dog and is being taught the scent we want to know about.
Still, we won’t be alone. When we get the puppy (who’s due to be born in about 5 more weeks) we will get a full weekend of teaching us how to train. We will enroll in a standard puppy training class, we will do scent work. After 2-4 months, puppy will go back to the trainers for a month. They will do more intense training including lots of public access work (remember, this dog will go everywhere!). Then, it comes back to us for another 2-4 months with new instructions on what we need to focus on. This cycle will repeat until the dog is 1 1/2 to 2 years old and fully trained. We will be getting our hands held through the entire process yet by having the puppy live with us from the start, it will get precious bonding time with C AND will have the advantage of having real-time training by living with a diabetic. Not just scent samples, but real-time highs and lows.
I started a facebook page to give updates on our process. I’d love it if you’d LIKE it and pass the word!
I took a big step today. A really exciting step. I sent in C’s application for a Diabetic Alert Dog (D.A.D.). Please help us say a prayer, think good thoughts, whatever you do to help him get approved and start moving forward on the process.
The other day I posted about how great it is being able to leave C alone and how wonderful he is at taking care of himself… Well, today I had a bit of reality thrown at me. Although, I typically don’t blame diabetes or get angry with diabetes (anymore!), I definitely felt the unfairness of it today.
Last night, E and I went to the Dodgers game (they lost) and C stayed at his friend’s house until we got home at midnight. This morning I decided to let him sleep when I went to work due to that. I tested him and gave a correction bolus. Woke him slightly to tell him I was leaving and that was that.
About an hour later I texted him asking if he was awake yet. No answer, still sleeping? I called about 15 minutes later, no answer. I texted again with no answer. I tried to call my roommate but got a text back that she was at work. I called him probably a total of 20 times over the next 15 minutes. I called the house phone (which we never answer because we only use it to call 911 and don’t give out the number) and of course, he didn’t answer.
I jumped in my car and headed home. The entire way trying to mentally prepare for what could be the worst. Picturing my son unconscious, maybe seizing, maybe dead. Wondering if he had already been dropping this morning when I gave the correction dose and I’d pushed him too far. Thinking about the people who have expressed that they don’t think I should let C stay home alone because of D and how I’m going to want to punch them for judging me if something happens to him. Thinking of his Dr. and how she probably wouldn’t approve of ‘her’ kids being left home alone and how diabetes is the one to blame in all of this. I’d never ever have these awful thoughts in my head if it hadn’t shown up in our lives. But it did. I haven’t felt that angry in a long time. Granted, I have a lot of other SHIT going on in my life which probably helped me reach that level of being upset, but I just truly fell back into my old(er) thoughts of just feeling that C and I were cheated.
Of course he was fine. Of course he was sitting on the couch playing video games and eating popcorn. Of course he left his phone, on vibrate, in his bedroom and totally forgot to call me when he tested. Ya, he heard the house phone ringing off the hook and thought it was weird but it never occurred to him that someone would be calling HIM on that phone.
I went over the rules with him again and added a new one that if the house phone rings twice in a row or even more he needs to start answering it. I have been really pushing myself to think of C, not a kid with diabetes, in all situations. If he hadn’t been diagnosed with this would I leave him home alone at 12 years old? Yes, without a doubt. So, scary or not, that’s what I’m going to do.