Today let’s revisit a prompt from 2014 - May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope? (Thanks again to Scott for this 2014 topic.)"
Taken from the topic list page of Bitter~Sweet Diabetes.
Type One Diabetes is an emotional issue for me because, this is my child we're talking about. Michael was diagnosed just 17 days before his second birthday. That day was so awful. And I realize it could have been worse. The odds of being diagnosed under the age of two without going into a coma is 1 in 3 million. I understand it could have been so much worse. But the pain that we experienced (and sometimes still experience) is still real and raw.
When I returned to work a week after his diagnosis, I just cried and cried right there at my desk. It felt like it took me months to be able to breathe. It took months before I could look at my sweet little toddler and see him as a child again and not a frail little boy who could die at any moment.
Type One doesn't quit. It doesn't take a holiday. It doesn't offer a much-needed break. It's relentless and cruel and doesn't play by any set of rules. What we do one day won't offer the same outcome on the following day. This is an emotional battle. We had to come to terms with this, and once we kind of understood that each day is its own battle, we began to learn to deal with it better.
At first, my coping skills were to read as much as I could about it. Three months into diagnosis, I had to enroll my children in daycare because my mother-in-law (who watched my sons during the day as I went to work) had to have surgery and would be recovering for three months. So, from October 2014 to February 2015, I had to trust complete strangers to care for my sons, and to be taught how to care for my son with Type One and to keep him alive everyday. I taught the daycare staff how to handle Type One Diabetes. They stepped up to the plate and really did a phenomenal job. We experienced our first holidays post-diagnosis while my boys attended daycare. Halloween, Thanksgiving, Christmas-- aka class party x 3. Although the staff did a great job, sending my sons to daycare were some of the darkest days of my life. I did zero coping during that time. I withered away until I wore a gray complexion on the outside as much as on the inside. Once my sons could go back to my mother-in-law's care, I finally felt myself return to a tiny piece of normal.
My husband and I didn't go away by ourselves for two years post-diagnosis. It was at that point where we felt like we could mentally afford to do so. Our family has been so supportive and eager to learn about Type One care. Because of them, my husband and I were able to have a few days to ourselves. It wasn't without phone calls and texts of a diabetes-related-nature, but just the opportunity to get away for a bit was refreshing. I accidentally scheduled our trip over my son's second diaversary and I felt so much guilt. It was self-inflicted and no one else felt that way. My husband doesn't like acknowledging the diaversary because the memories of that day still bring so much pain to us. So, to let our little boy just be a little boy on his second diaversary was kind of perfect.
I don't feel like I cope as much or as well as I could. I'm not really sure what to even do to cope with this. I try not to let my son see the fear in my eyes or the frustration when I've attempted to treat a blood sugar (whether low or high) and it doesn't cooperate. I never want my son to feel like a number. I want him to always know he is valued for who he is and blood sugars don't define him. I plan to be such a huge advocate for him in school to make sure he gets to be a kid and participate in parties and P.E. and all of the other fun things that diabetes could so easily rob him of. We offer prizes to him for CGM insertion changes. We let him pick where his pods go during pump-site changes, and he chooses to push the buttons on his pdm to activate the pod. We never tell him "no" due to a diabetes reason-- so it's never a "no, you can't do that because of your blood sugar." We may say to "wait"-- "let's wait for your blood sugar to come up before you go run around"-- but we never deny him the privilege of being a kid. I'm not really sure of other ways to let him cope. He knows he has Type One Diabetes, but I'm not sure he understands that not everyone else has it. This fall when he starts kindergarten, I anticipate that I'll have to come up with some more ways for him to cope once he's faced with a classroom full of kids who don't have to do the extra things he does.
I think Type One will always carry emotional weight. It's tiring and can be defeating on certain days. It's still something that stole a carefree life from my little boy and I don't think I'll ever get over that. I don't cry everyday, but I do still cry. I still get nervous when it's time to order supplies for my son, because I realize that his life is tied to the pharmaceutical world. I still experience jealousy when looking at other kids who get to fill up on frozen yogurt with candy bar pieces all over it. I still inwardly cringe when people talk about how tired they are because their kid had one restless night of sleep. It's all still real. And I'm not sure I'll learn to cope in any different ways than tears and brief episodes of time to myself. Suggestions on coping methods are most welcome! (for both me and my son)
Until Next Time,
Much love, Reba
I Still don't know how I survived those days after Elise's dx. I was so lonely, and felt so alone. I think that's why I started writing a blog, because I HAD to get all those feeling out somewhere. It can be hard to go back and read those first posts, but it also helps me to see how far I've come.
ReplyDeleteBTW... congrats on the pregnancy!
Thank you!
DeleteI am glad that I wrote down my thoughts & feelings after diagnosis just so they'd be recorded but I didn't think about how I could read them with the intention of seeing how far we've come! That's a great point.