What No One Tells You

When you get your child’s diagnosis you get a lot of the “your child will never” along with it.

Your child has Cerebral Palsy. He will never…

…walk

…talk

…feed himself

…have any quality of life (yes they tell you that!)

They tell you what to expect or what not to expect.

They tell you all of that. But what they don’t tell you is that there will be one phase from day one that will probably never change…

…sleep!

They don’t tell you to prepare yourself for the never ending newborn style sleep cycle and it’s exhausting. It’s something I was not prepared for!

I wasn’t prepared for my nine year old to only sleep two to three hours at a time at night. I wasn’t prepared for him to need a drink almost every time he wakes up whether it’s 10:30pm or 3:30am. I wasn’t prepared for then having to rock him back to sleep and so carefully put him back in his bed.

It’s been this way since day one. Grant has never been a good sleeper. There are so many things I attribute to his lack of sleep. If he gets hot, he can’t take the covers off. Same for if he gets cold, he can’t pull the covers up. He can only lay on his tummy and tries to get comfy but his body gets stiff and hurts after being stuck in the same position. He gets super stuffy at night and has no way to sit up and try to fix it. His tummy hurts from needing to go to the bathroom and laying on his tummy makes it worse.

I get it…I totally understand. I just wish someone had told me…prepared me. Because even though it’s been this way since day one, at times it gets truly exhausting doing it with no break night after night

But I do it…I sit here, knees curled up, arms falling asleep and neck hurting from sitting here with it cocked to the side…night after night because he deserves the world and while I can’t give that to him, what I can give him is comfort in knowing that even through the exhaustion and yes, sometimes tears, I’m always here to rock him back to sleep!

Moral of the story: keep pushing through. Fight the exhaustion. Fight the tired. Because he’s fighting an even harder battle and doing it with a smile on his face!

Have a blessed day!

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