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What Brings Me Down Day 3 DBlogWeek

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The topic for today is What Brings Me Down. 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?

Being a t1D sucks. We all know that. I’ve been living with it for 30 years. I could probably write a list of things that bring me down so long that I’d still be here writing it 30 years from now.

What I didn’t realize until three years ago was how much it hurts to be a person who loves a person with T1D.

It was about this time of year, we had celebrated my nieces first birthday about 4 months earlier and her brother’s third birthday had just passed. I was over at my brother’s hanging out with him and my sweeties, who as of now are the closest things I have to children. My brother says to me, ” I think she has diabetes.” I look at him in disbelief and sluff it off (him and I can be both be a little paranoid about health issues at times). I respond, “Why would you think that?”
“She’s really been going though a lot of diapers.”
“Nah, I don’t think so, you are probably paranoid. Just take her to the doctor and find out for sure.”
The next day at work my cell phone rings and it’s him. Why is he calling me in the middle of the work day? My brother is not a “call and chat” kind of guy.
(I am tearing up as I try to relive this phone call…)
Through tears, he tells me her blood is 18. I try to reason with him. “Maybe she had a big breakfast? Maybe it was a mistake. Check it again.”
I went through so many emotions. I wrote about it last year http://wp.me/p359TO-e

Clearly until three years ago, I only knew and felt that I was the one with the illness. I was the one feeling the lows, getting pricked and poked, being controlled and so on that I never really quite understood until I felt it myself how much it hurt when someone you love so much is diagnosed with this life altering illness. Someone so small and precious. When I think about what brings me down the most about diabetes it’s that she has it. She has to feel all the feelings that we all know so well. Her brother has to wrap his little boy mind around it and her parents haven’t had a full nights sleep in three years. For some reason I can deal with the fact that I have had to live this life but as much as I try to be positive about everything and know that she will be fine too, I still hate (hate is a strong word but hey, if the shoe fits) that anyone especially my niece has to deal with this. Hasn’t my family been through enough with me?

As I write this though, I think of this community and I know that you all feel the same way. There are people in this community who have more than one child with D. Parents who have D and also have children with D. It just doesn’t seem fair! I guess that is the mystery of life. And now that I am super bummed from thinking and writing about this, I have to switch my thinking around. That’s how I cope. I have to find gifts even though it’s not fair. Dealing with life on life’s terms and accepting that this is how it is and that I can either make the best of it or let it swallow me whole.
Why not my family? Why not me? Everyone in this big ol’ world has something to deal with.

And although the cure is not here yet the advances in technology have come a long way and complications in T1Ds are declining. So to cope, I count the days blessings and not the days worries as much as possible. I realize that I have an opportunity to be a role model to my niece. I want her to see that people with D are normal (mostly haha), and can do ANYTHING their hearts desire. I want her to see a healthy diabetic who lives a long amazing life, who is happy and doesn’t let D bring her down. But I also want her to know that it’s ok to not be ok and to be sad sometimes too because that is normal. She inspires me to take the best care of myself as possible.

There are many ways to cope with feeling down, but sometimes the best way is just to feel the feelings and not always try to run away from them. Usually they pass just like dark clouds and the sun always comes out again.

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7 thoughts on “What Brings Me Down Day 3 DBlogWeek

  1. My 6 year old daughter was diagnosed with T1D a year and a half ago. It was Christmas day when I noticed that she was really grumpy and that she didn’t seem excited to get her gifts. I said to myself, “It’s nothing, she’s just having a moody day.”… even though her father is diabetic and my mind knew differently. The day after Christmas I fell asleep with her, and my husband woke me up in the middle of the night when he got off from work. I was disoriented and sweaty. Well, I thought I was sweaty, and I wondered why. Then I felt the bed. The entire bed was soaked with urine from the middle to the bottom, it had soaked through the sheet and mattress cover. There was my beautiful daughter sleeping soundly, a girl who had never wet the bed after toilet training, not once. I cried. I cried because I knew. I couldn’t say that she was moody anymore.

    Her blood sugars were tested a day and a half later, when everyone was ready to know… and they were in the 500s. Before I could process it, she was in the hospital and I was looking at her, so little, in a hospital bed with an IV in her arm looking washed out and weak. She was in good spirits until they came in to do her check or to give her insulin, and then she screamed. She fought. Before we left, I had to do her check, and thank God they let me use a regular pricker. I had to give her a shot. That was way worse, because all that I could hear while trying to put a needle in her leg for the first time was, “No Mommy, please no Mommy, please, please, Mommy, please, don’t Mommy…” in my ears ringing while trying to concentrate because I didn’t want to hurt her. No one wants to hurt their child. She cried on and off for the first couple of months, but she adjusted. She started liking for others to see what she was doing. She still likes to explain her blood sugar checks.

    My daughter is my hero. She is so brave and wonderful and beautiful. She will never again be that little girl who can just run and play and eat whatever she wants, though. As for me, there are some nights that she has been low and I can’t sleep after checking her sugars again twice to make sure they are okay and I still don’t believe that her numbers will stay okay, and every time that I see her run I worry on the inside because I have seen her sugars plummet, and I feel so sad when she lashes out because her sugars have had a roller coaster day– because it’s not her fault, and it’s not anyone’s fault… but it isn’t fair.

    She has spoken in front of her school about the JDRF and raised money, but sometimes, when there are cookies out everywhere at Christmas and I know that her sugars are stable and I can only give her a little teeny bite so that she doesn’t feel like she is different, she still does, and she will say that she hates diabetes. Every diabetic does, but it is a large part of everyone with it. It is a large part of her that I embrace as I need to but inwardly despise. It took part of my daughter away… part of who she was became something else. It is beautiful as all of her is beautiful, but it is beautiful with restrictions. So that’s how it feels to be an outsider looking at your child with diabetes. It feels like endless love, admiration, sorrow, worry, anxiety, fatigue… all rolled into one big ball that will always be in the shadow of my little girl.

  2. As the mother of the social butterfly and grandmother (Nannie) to the niece it breaks my heart to know and see what they deal with each and every day there is no down time, I can’t kiss and make it better for them. I will tell you this I am amazed by the stength and determination they both have and how they tackle everything head on.
    If you don’t know them personally you would never know that they are managing diabetes every day and doing it with a smile on their face and a spring in their step.
    I commend them for how they deal with the challenge of diabetes everyday and I love them both so very much and the darn cure can’t come quick enough I can’t believe it is taking so long!!

    All my love my social butterfly keep on blogging!!!!

  3. Thank you mom (Karen) for your comment, but more importantly for being so strong and making sure I was always safe. And also for making sure that we our life wasn’t only filled with finger pricks, needle pokes and worry but also lots of laughs- like pee our pants laughs! 😀 and family fun! Xoxoxoxoxo

    1. Oh thank you!!! It took crying over a keyboard, but it was well worth it. Like I told you on my blog, your own post also made me cry… which was the reason that response exists in the world. Thank you for sharing, and I hope to keep reading your work and to keep in touch. 🙂

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