Wednesday, May 14, 2014

D-Blog Week - What brings me down

It's the 5th Annual Diabetes Blog Week! Thanks to Karen over at Bitter Sweet Diabetes for the topics and agenda for the week. Head over there and see all the other postings from great diabetes bloggers from all walks of life. Go. Now. I'll wait.

Day #3
What Brings Me Down

What it does to my soul

The diabetes care is 24/7/365 x ad infinitum. At least it feels that way, to me. There are times when it flows, and there are no bumps or problems or things to figure out. Then all of a sudden there is, like a wave that comes to the shore and crashes, pulling me under for a while. I know how to swim and I know how to hold my breath. Thank goodness.

And right away, as I write all of this, the guilt floods over me for writing it and thinking it and feeling it. She's not to blame for having this, but the mere having of it is wrought with emotional side effects and landmines.  It's not MY diabetes, it's hers. I have no right to say how it makes me feel, I am not the one living with it. But I do, by default, don't I. 

I'm the CEO of the diabetes for now. And it's one hell of a job, one I would not wish on anyone I cared about. Gosh how that sounds harsh when I write it. I have a hellish job caring for my daughter's diabetes.

Jesus, no. NO.
That's not what I want to say to everyone, it's not who I am. 

The caring and loving I can do with my eyes closed. Oh how I love this child of mine.
My love is chronic.

The endless numbers and doses and doctors and specialists and devices and counting and measuring and calculating and adjusting and lows and highs, it's sometimes too much. I'm feeling bad about writing that it's a crappy job. For those of you who feel the same sometimes, there it is. We can now celebrate the crappiness that is diabetes in a young child.

The first two or three years, it glides, the care. I found myself easily awakened, heightened to the lows and the highs. Asleep at 10 PM, up at 12 AM, awake at 2 AM, then 4 AM, then up for the day at 5:30 AM. No problem. Roll with it. 

Now do that for five-plus years. It takes it's toll, physically and mentally and emotionally. Ask any D-Mama or D-Papa when was the last time they slept for more than one day straight and I'll bet the answer is something like 'Diabetes camp week.' It rolls around once a year, for 5-6 days. Imagine not sleeping well but for 5-6 days of the year. Yeah.

Sleep is the escape to rest body and mind, and diabetes doesn't ever let her or I escape. I get to escape for 5-6 days when diabetes camp comes,  and she still has to deal with it. When I do dream at night, it's sometimes about diabetes. Isn't that just the icing on the damn cake.

My dreams don't let it go either.

The chronic does things to your soul. It messes and it sits there and it just well, sticks. Sticks to it all. It's something else, not of this world, to worry whether your child wakes up in the morning. Every morning. There isn't one of us in this D-parent world who hasn't thought it or almost lived it.

What if I walk in there and we have missed a low BG? What if this is the morning I slept through the alarms, I miscalculated the dose of insulin, her body decided it had had enough? Imagine the coma and the seizure sitting on the bed, waiting to take. You tell me that isn't a bunch of soul-changing thoughts I just wrote, right there.

And it takes something, from your soul, this disease. It takes something from your child - the carefreeness of childhood, the innocence of not being chronically everything - and it doesn't give it back. I would give my own soul on a platter of gold for her not to have diabetes, but it is what it is. And accepting the 'is' is hard. Constantly hard. For her and me. 

Ever have your child hate something they have so much they wish they would not live? I have and it tears my heart in a way that is un-mendable.

Has it made her stronger? What a useless question at times.

We are strong when we are called on to be strong and she has been called again and again and again. Enough. She's strong.
Diabetes asks kids to prove it, over and over and over. 

I wonder how strong and resilient I would be without diabetes in our lives and I think, you know what? 

I really don't care. I already was resilient and strong. 

What is my lesson in all this? What is the lesson? 

Maybe the lesson is to accept, to wade through, to love all that it is, and get on with it.


Lorraine of "This is Caleb..." said...

Yes, Penny. Yes. To all of it. I find myself pushing thoughts out of my head, like what would life be like without - not letting myself even wonder. It's wears on you. And the guilt of complaining that it wears on you wears on you.

Hugs. And more hugs.

Anonymous said...

Exactly this, brought tears & I'm glad to know other dmom's (&dads) feelings so I'm not so alone

Sparrowmin said...

Yes, this! Exactly this!

Karen said...

Thank you Penny, this is beautiful.

Meri said...

I love you.

Unknown said...

Wow. Amazing post. I got diabetes in my early twenties so didn't realize how much work it is for a parent with a child with T1D. You are awesome.