I just might have a problem that you'd understand
Wednesday, September 21, 2011 at 8:38AM Arden's blood sugar fluctuates, that's no surprise to me or to you. It goes up and down, somedays more then others. There are times when it stays steady and the line on her DexCom CGM seems to be perfectly still.
My very soul feels attached to that line and I ride it like a roller coaster. Most days I don't feel the stress or hold myself personally responsible for where that line goes. I just do my best to keep it steady. The amount of care and effort that goes into managing that line is immense. It starts with grocery shopping as I try to plan meals that are healthy and have a low impact on Arden's BGs. It's tough with younger children because I'm also trying to find foods that they enjoy while gently directing them to healthy choices. Then there is pre-bolusing, the act of administering insulin before a meal to aviod spikes in that line, administering the insulin, watching that she eats and on and on. It must sound strange to an diabetes outsider but all of that is incredibly stressful and it happens every few hours.
The stress stems of course from the knowledge that high BGs are dangerous to Arden's longevity and the lows are no better. The real source of my terror is that I know Arden isn't feeling her best when her BGs aren't in range and steady. Every meal, every snack is an oppurtunity for her to live an hour or three in a way that any parent wouldn't want for their children. I feel all of those minutes in my heart in a way that would take a thousand words to describe.
When she seems to space out on the sofa as her insulin struggles to bring her back to normal, I feel like a die a little inside. When she falls to sleep at night as her BG drifts down, I watch hoping that it will stop where I need it to. When it doesn't and she gets too low, the moments strikes at my soul. If she stays too high and I have to give her more insulin, that's just another night that I don't sleep. In all, almost every moment of the day is lived in uncertainty.
Last night I just couldn't be strong anymore. I tried but when Kelly and I went to bed, I layed there taking deep breaths, trying in vain to expel my stress but I couldn't so I pulled Kelly close to me and when her skin touched mine I began to cry.
In an instant the tears were crashing down my face and I could hear them splashing on the pillow, I thought to myself, "I haven't cried like this about diabetes since Arden was diagnosed". When it finally stopped, I had an overwhelming urge to speak outloud the only thought that remained in my head but it felt stupid to say, childish even. I did finally say the words to Kelly even though they felt like a complete waste of breath...
"I don't want her to have this anymore".
Kelly and I spoke about stuff too private for even my transparent blogger heart to share and then I pulled myself back together, snuck into Arden's room and took a look at her CGM - I was strangely refreshed.
This morning while I was making Arden breakfast she started to sing out of the clear blue. I swear to you that I'm not making this up or embelishing in any way.
Arden started to sing 'Lean on Me'...
I'm crying now just thinking about it. I know that we are going to be okay and I wanted to share this with you so that you might consider a good cry next time there's "a load you need to bear that you can't carry".
She sang 'Lean on Me' having no idea of what transpired the evening before. No kidding, huh? Pretty great...
BGnow, DexCom, Kelly, Media, Transparency, type I in Daddy's Blog
Reader Comments (8)
Wow, pretty intense but completely understand! You are a strong man and wonderful father! Keep up the hard work...
Oh Scott, I am so sorry that it's been one of those nights. I feel the same sometimes. And yes, I do think our kids know something. 'Lean on Me' - exactly.
Aw, I completely feel your pain. I read your blog with one eye closed as I don't want to see too much for fear of breaking down right here. Heck, I cry reading my own blog posts. You are such a great dad and pancreas.
Leslie
We have moments like those because we are human. It's impossible to not feel that way at times. And I think it's perfectly healthy to let it out when the burden feels like it is too much to bear. Othewise we would just fall apart. I'm glad you felt sort of refreshed afterwards and hope it lasts quite some time.
Nice post, I feel those same emotions, I try not to let my self cry around my wife. I guess that may be in my worst interest, to keep things bottled up. Thanks again for sharing, letting us know its ok to be human.
I wanted to thank everyone for the kind and thoughtful comments, they make sharing on this very personal level very rewarding.
Thanks for reading!
A comment from 'Mike Lawrence' that read "Scott you and Kelly are in our prayers" was accidentally deleted by the system.
Apologies...
you have beautifully put into words what so many of us feel on a day-to-day and hour-to-hour basis. even this very moment, my daughter is napping on the couch next to me and i have one ear tuned into her breathing. it's beautiful that arden sang that to you the next morning.