Dealing with Type 1 Diabetes has been referred to as a battle, a balancing act, a 24/7 disease. And without a doubt, it is all three and more. But it is not just a disease that Ryan lives with, we have discovered that it is a disease for all five of us, a disease we all deal with and balance, a disease where each of us plays an intricate, needed role.
At diagnosis, Jason and I discovered a lot about how to handle devastating news. We didn’t do it all “right,” I’m sure, but with diabetes, there often isn’t right and wrong, it’s merely moving forward any way possible, as one of my d-mom friends says, it’s about a “keep swimming” attitude and approach to life. But what Jason and I did do without any discussion is take specific roles that came natural to each of us. Jason became the education goo-roo. He got on the internet and researched diabetes, how it worked, what caused it, the long-term negative effects if not maintained, how insulin worked, how Ryan’s body didn’t work, what a pump was, what kind of pump we might want, who to listen to and not to listen to and on and on. He was all about research and understanding the disease. He even got into research immediately about a cure and how far that research has come. Jason has even made a connection and received a personal email from Dr. Pere Santamaria leading the research in Calgary, Canada for the nanotechnology based vaccine that cures Type 1 Diabetes and has been successful in mice. He stays on top of that those things, keeps us in “the know.” He also is very active in taking sugars and giving shots when he’s home . . . a very involved Daddy before dx and after.
My role is typical. I make living and maintaining diabetes happen. I plan the meals and snacks. I figure out carbing for activities, work with the school and nurse, take to endo appointments, talk to the d-educators about problems and snags and changes. I give most of the shots because I’m home with him 24/7. I take the phone calls from him at school where he’s anxious or nervous about his sugar or forgetting to eat his afternoon snack. I do my best to keep things “normal”. I figure out how he can do all the things other kiddos do or make a quick minor change to keep him healthier. I go to school during a field day and see they are having sugar filled freezer pops for a snack and run home and grab one of his sugar-free tropical flavored popsicle as a substitute. That’s my d-mom job. That’s what I do because I’m Ryan’s mom.
Ethan plays an amazing role. Ethan has always been momma’s helper, very sensitive to my needs and what helps me. And he transferred that natural innate sense to be the provider to whomever needs the providing, and in this case, it’s Ryan. Immediately after dx, he wanted to be involved. He begged to learn how to give shots. So we taught him. He now gives shots on a regular basis, just to keep him in practice, and Ryan so loves it! Ethan loves to help plan lunches. He takes pride in the fact that we can leave all three of them with anyone for a few hours or so at a time because he knows how to care for Ryan. We left him with a family friend who is a nurse for dinner one night. And when it came time for shot and dinner, Mrs. B was ready to give the shot and Ethan stepped in and took over. Mrs. B was amazed at his “take charge” attitude and Ryan’s willingness to let Ethan have control. Ethan often questions me, “Mom, he doesn’t have enough carbs for his meal,” or “you’re giving a correction shot too soon, aren’t you? Has it been a full two hours? Let’s wait about 15 more minutes and make sure,” or “Mom, Ryan needs his bedtime shot” when he hasn’t seen me give the Lantus. He is quick to say, “Let’s go ride bikes” when Ryan’s sugar is high or make sure we have a Capri Sun in the bag when we leave to go somewhere. He is an incredible little man who is only 10-years-old.
Ryan’s job is toughest. He’s the one who has D going on in his body. He’s the one who deals with the physical effects along with the emotional and mental effects. The growing up too quickly. The unavoidable loss of some of his childhood. But he shines through all this. He has an amazing attitude. He sees so much of the positive. He, at a young age, remembers what it was like before his little body had insulin. He remembers how he was tired and his mind was cloudy, when he didn’t sleep well, when he didn’t have energy, when he just didn’t feel good. And he manages to be thankful, at times, for the shots. The “shots make me feel better.” He is involved in his care and maintenance. High sugars make him mad and bother him. He’s desperate to work them off on the elliptical. Lows don’t bother him as much yet because we haven’t seen any super scary ones like some have. When he sees a number in the 50s or 60s, he just smiles and says, “Where’s the Capri Sun?” and is willing to sit by the side of the pool perfectly still until he sees a good number. He is amazingly brave and has more courage at five-years-old than I will have in my lifetime!
And even Aaron plays a part. He asks if he can have things at the store when we grocery shop with questions like, “Does Ryan have enough carbs for that?” And if the answer is no, he’s good. He will ask for a Slurpee and ask if Ryan can have insulin so he can have one too. At nighttime, when it’s time for bed, he has more than one time been told to go on upstairs and brush his teeth and jumped up and said, “But I haven’t had my protein yet!” and will run and grab him a piece of cheese. Lunch time is always fun. He is always in his own little world and when he sits at the table with his plate full of lunch, he’ll ask, “Has Ryan had his shot yet?” before he begins to feast. Sometimes it’s almost as if he thinks he has diabetes too. It’s funny to listen to a non-d four-year-old talk about carbs, protein and shots. Recently, he has started wearing a blue JDRF cure diabetes jelly bracelet (I bought kid sized ones because he wondered why everyone was wearing them but him). He wants to be like the rest of us and support Ryan and is so aware and sensitive to what is happening with Ryan.
All of this makes living with D a little easier. It’s been a bonding experience for us all. Sometimes I wonder . . . would we be as close and tight-knit without D? Or has it given us that bonding glue to solidify who we are as a family? D doesn’t define our family but it has definitely given us a reason to be stronger, be more sensitive to one another and work together. “That which does not kill us, makes us stronger.”