My daughters future: Impotence, Nephropathy, and Retinopathy

My daughters future: Impotence, Nephropathy, and Retinopathy

Honestly, I just want to cuddle you and tell you it is going to be ok, don’t worry, we can fix it.

But I can’t.

This year I have read multiple stories of kids dying from Type 1 complications, I know, like many other parents, it isn’t always ok.  To shield you from that in its entirety would be wrong.

Yesterday, you asked your nurse if you stood a chance of getting complications when older, by older you mean twenty plus.

You had in your hand a pamflet that listed diabetic complications:

Nephropathy

Retinopathy

Nephropathy

Heart Diease

Limb amputations

Strokes

Impotence  – that lightened the mood slightly.

The rest of the list read like the doomsday book, the opening line above identified if blood sugars were kept consistently between 4.5 and 7, then these risks were low.

Yours at that moment in time were 24.

The nurse couldn’t lie either.  Honesty is the best policy. She explained all Type 1 diabetics come with risks of these conditions, but Molly had to keep doing what she was doing, fighting the good fight, against the gremlin living inside her body.

I wanted to take that paper and tear it into tiny shreds, to scatter it across the floor and grind it into submission.

You are eleven, you shouldn’t be fighting something so complex that clever scientists can’t find a cure.  You should be trying to control raging hormones, not trying to work out what impact periods and puberty will have blood sugars.

The last few months have been fucking hard.  I’m sorry to use the language reserved for when some numpty cuts me up on the motorway, but you and I both know, it has been a fucking mare.  We have days of calm, when your blood sugars do exactly what they are told, followed by nights of rollercoaster highs and days of stubborn lows.

We have come off the pump and returned to injections – your choice – your body.  You want a rest from your mechanical pancreas.

I get that.

But tonight when I put you to bed and your blood sugars went from 5.7 to 26 in 30 minutes, you asked me if that could be high that causes the stroke in 20 years.

Eleven year olds shouldn’t have to think such thoughts.

But you have to.

You have to decide if you want to do a diet overhaul to try and tackle the maddness that is Type 1 this year.  You have to decide if you think 6 injections a day is enough or if you want 8.  You have to know the long term complications of the condition that lives within you, because you have to know all the facts in order to win the war.

Fuck (again, sorry Molly).

I don’t think I ever stop enough to tell you how proud I am of you.

When I was eleven all I worried about was whether I could get a perm before secondary school and if my teeth would straighten out.  (My teeth did straighten out, and my hair has never been the same since.)

You are an inspiration, who simply gets on and does.

After you questioned me about strokes, you tucked into bed, one hand circling around Nellie, your prized teddy since you were a baby, and giggled… Get your head down, you said, you will need sleep, the night shift is going to be rubbish.

With that you pushed your blood kit into my palm and leant forward for a kiss.

Your ability to process this shitty, shitty diease is incredible.

Your ability to laugh at adversity destroys me.

I am so bloody proud of you my child.

 

 

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7 Comments

  1. March 22, 2017 / 10:53 am

    Aww! Bless her and you! It’s so rubbish that you have to deal with this and worry about the future. You and your girl are both amazing and are both an inspiration. Sending love and hugs x
    Kim Carberry recently posted..Our Beauty and the Beast Wishlist….My Profile

  2. March 22, 2017 / 1:57 pm

    They are amazing. We take it harder, because they’re our kids, and we never want any of that crap for them. It’s shit. Totally. So shit I will absolutely join in with you. Fuck this bastard disease for making our kids think about all this crap. But then she tells me off for swearing as fast as she tells me she’s ok and she’s glad it’s her, not me. Complete legends, our girls.
    Helen recently posted..Why Teenage isn’t a numberMy Profile

  3. March 22, 2017 / 2:19 pm

    I just can not comprehend. Really, even though I read the words, I can not imagine this being my child. Even though Maxi lives with a condition it is not like threatening like this. I hate the fact that I might have passed on my genetic spelling mistake to the boys, but can not fathom what you are going through. Empathy has deserted me. Sending love.

  4. March 22, 2017 / 3:23 pm

    oh bless her, kids seem to cope much better than the parents. She’s amazing! I’m sorry you are both going through this, life just isn’t fair sometimes x

  5. Sue Bundgaard
    March 23, 2017 / 9:14 am

    These T1 kids are amazing! x

  6. March 23, 2017 / 4:02 pm

    Jane! This brought me to tears. You are BOTH an inspiration and I’m proud to call you my friend. Such a crappy thing to have to go through. You know I’m only a phone call away if you ever need to vent. xxx

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