Fatigue.

Having a disabled child is like being suddenly thrust into a club you didn’t ask to join. You’re shipped off to war even though you never enlisted. But you have to put on your armor anyway, and know that if you’re lucky, you’ll discover new sides of yourself. Like a will you never knew you had. And you’ll get to see new sides of the people who matter the most to you in the world, as they wrap you in their love and lend you their strength when yours is running low. And then you go off and you fight. You fight like hell. Because, really, what other choice do you have? 

Aubree is actually awake in this picture, ill, sleep deprived, content just to be held. Lanky limbs folded in my lap as she nestles into my heart. Her little face. You are worth every moment of this fatigue 💟 

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Fatigue.

12 thoughts on “Fatigue.

  1. Just want to say it’s refreshing to read your blog my little girl has hypoplastic left heart syndrome and cp, and some days are just tough. We recently had to move her into our room because of sleep issues. And PT seems forced, but when I see the progress. I hope one day she will realize I was tough for both of us.

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    1. Thank you for reading, yes it is tough and it’s not always good, my Aubree is 4 she doesn’t sleep in her own room either due to sleep issues. It’s hard to watch your child struggle with something you can’t fix, stay strong mumma x

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      1. I am a Dad, but we have had some luck. Ultimately, I want her in her own room. Her anxiety really flares up at night you think shes asleep and 30 minutes later wham! Back up in full out panic mode. Oddly we dont get that when she sleeps with us.

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      2. It seems like seperation anxiety. Bolts upright and just starts wailing. Tried a heated matress pad, several types of melatonin, music through the night. Keeping background noise in the house. Once she wakes only in her own room. Its like a cycle every 30-45 minutes and it can lasts for hours. Only in our room is anybody able to get sleep.

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      3. That must be hard, is Melatonin all you’ve tried medication wise? If she has CP might be that her brain can’t regulate her sleep/wake cycle properly. We had to trial a few medicines in various doses before Aubree could sleep a solid few hours at a time.

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