My life is so much different than I thought it would be. I never thought it would be my child living with a disease that required 24/7 care. Jordan and I used to enjoy a night at Lagers having supper and drinks with friends every once in awhile while the kids went over to Nan and Pop's house. You see, back then, Trey could be taken care of by anyone. Back when life was easier.
I won't lie when I tell you that this disease has been really rough on our family. Obviously, Trey suffers the most from it, but the rest of us do as well to a certain extent.
I've had the afternoon to myself today. Jordan is out of town and my mom picked up the kids and took them to their annual Hobby Farm excursion. I needed some time alone ... a small break if you want to call it that. Now let me tell you that my mom called me twice in four hours to ask something regarding Trey's diabetes care. The first call I had to approve a snack and walk her through giving him insulin and the second call was her panicking because his CGM was reading in the 60's and she gave him 4 skittles like I had told her to do before they left. I also spent some time baking - which I LOVE to do. I used to bake all the time as it was like therapy for me. After Trey's dx, I don't bake much because it's not good for him to have it and it's not really fair for us to eat it and not him so I just don't do it. Today I found some good low-carb recipes that I made. Pumpkin muffins and Betty Bagwell's recipe for low-carb chocolate chip cookies. I then made Delanie some no-bake bites with MM's because honestly, she deserves it.
Diabetes is on my mind no matter what I'm doing. There is never a break from it. Even when he's not in my care, it's on my mind. Last weekend I went to the Garth Brooks concert and my alarm for his CGM was going off randomly, so I knew what his sugars were even when I wasn't around him. Grocery shopping consists of more label reading now. Recipes consist of trying to make it as low carb as possible. Hell, our grocery trips are planned around Trey's schedule. Will he need his sugar checked while we are there? Will he go low or high? Today was Sunday School and at 7:45am Trey's CGM decided it had had enough and quit. 30 minutes before we walk out the door for church ... dead. So I checked his sugar (200) and gave him a brownie, knowing this would tie him over and prevent a low during Sunday School. We got home at 10:45, changed out the CGM, ate lunch and at 1:00 Grandma Lori came to take them to the hobby farm.
Friday night we went to the Wings home opener. Of course, I keep my eye on Trey Bagwell more than the other players. What I saw was Bags not acting like his normal, goofy self. I saw a stone faced kid, looking like his mom forced him out on the ice when he didn't have any desire to be there. During the line-up announcement, he walked right by my Trey and didn't give him knuckles or pat his head like he always does. All game, Trey looked as if he was not having fun - and that's not the Trey I'm used to seeing. I am usually saying, "God Bags, focus!!" Trey's dad, Bob, was in attendance. He came and visited with us a bit. I said to Bob, 'I wonder if Trey is running high because he looks really grumpy.' (After the game we got to talk to Bags and I asked him why he looked so crabby and he said he was low most of the game. I KNEW he wasn't right ... I just could tell.) We talked about the pump, food, Twist Cone, hockey and A1C's. Then he said something that bothered me. He said, "Trey doesn't want to be different. That's why he eats junk and why he doesn't want a pump hooked up to him - he wants to look like everyone else." My heart broke. I understood that, but yet I wish it wasn't that way. I wish Bag's wasn't ashamed or embarrassed. I wish he felt comfortable in being 'different' because he IS different. My Trey also has the same feelings sometimes. He hates it when someone asks "what's that?" when they see him pump. I've always tried explaining to Trey that people just don't know - so tell them 'this is my insulin pump because I'm a type 1 diabetic.' and leave it at that. While it doesn't have to be broadcast that Bag's is a T1 -- I want him to own it and rock it and be that inspiration to the little ones. Talk about it. Not just the good, but talk about the bad. It really got me thinking that I know Bags has good days and bad days. I know days he wakes up at 80 and days he wakes up at 250. I know that his teammates know of his T1 but that they don't get it. While it's not my own body going through those feelings of highs and lows, I see it in my own Trey and it is upsetting. I have a little bit of understanding. So for Bags, he basically goes through it on his own. Yep, he can call mom or dad for the comfort, but the task of dealing with it 24/7 is exhausting. Trust me - I know. I'm sure there is a point where lugging around a backpack gets annoying. When packing up your supplies seems daunting. When you're running low on insulin and need to make a stop at the pharmacy before heading out of town for a weekend away is the last thing you want to do. Other kids have other worries and responsibilities - Bagwell's worries are huge. Bagwell's responsibilities are even larger. It's a lot. It's a lot to take in and deal with and I wish there was a way I could make that easier for him or be there to help him through that 2:30am low when he's groggy and his sugar isn't coming up and he feels like he's going to pass out. I just feel responsible for him ... like he's here in my town with my kid's name playing my kid's sport to show me what my kid will go through someday (hopefully) and my motherly instincts kick in and I want to protect him. He's a 19 year old man ... but that kid will always hold a special place in my heart and will always be 'My Bags'. He probably doesn't NEED me - and he knows I'm here if he ever does ... it's my Momma Bear instincts. Poor Bags! ha
I was in the store the other day and I was in line to check-out. The family in the isle over was talking and I heard a kid ask for something when the dad's response was "Yeah, if you want diabetes." I got a lump in my throat, sort of wanted to puke, my heart started racing and I wanted SO BADLY to set the family straight in the nicest way possible but I couldn't. I was almost frozen. My eyes swelled up with tears as I put my items on the belt. People ... THIS is the stigma I'm trying to stop. THIS very reason is the reason why I post on facebook about T1D and why I have a blog and why I vow to educate others because my 4 year old didn't get T1D because he had a Snickers candy bar. When will we start speaking up as T1 parents and people with T1 and raise awareness? It's October which means everything turns pink for Breast Cancer Awareness. Don't get me wrong - I love that everyone knows so much about breast cancer now, but how did it happen? It surly didn't happen because no one talked about it. It happened because someone got it, wanted to help others know the signs and get tested and it blew up and spread like wildfire. I would LOVE for that to be T1D someday. I can't do it alone, friends. I can share share share and educate til I'm blue in the face, but if you don't help me out by sharing posts, spreading the word, knowing the facts, TALKING ABOUT IT .... the world will remain uneducated and think a large bowl of ice cream will give you diabetes.
Do me a favor ... if you read this, find ONE post that I've posted on Facebook regarding T1D, copy and paste it (you cannot SHARE on Facebook if it's from Trey's T1D page as I have it as a closed group. So COPY/PASTE) on your status. If you want to say you're sharing this because of Trey Casanova -- go for it. I have no secrets about my boy being T1D. If you know of someone who would benefit from reading his T1D page -- ask them to send a message to me or "request to join" and I'll happily add them. (Please note I'm currently on a Facebook 'break' for my own sanity but I do log in once in the morning and once at night to check messages b/c of Trey's page and my Norwex page)
I can't do it alone - I need you. People always ask "Can I help with anything?" or "I wish there was something I could do." and I'm telling you right now ... there is .... help me stop the stigma of diabetes. It's an auto-immune disease ... it's not from eating sugar. Together we can bring awareness and hopefully reach ONE person who had it all wrong and will now stand corrected.
Thank you.
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