Cerebral Palsy, Five Minute Friday, Health, Love, Our Son, Parenthood

Five Minute Friday: Ache

Your body arches in pain. I try to find the best position to take it away. We do the hug-rock. You twist and turn and once we find the right position you melt into me. In this moment I hate the cp. I hate the weakness it causes in your body. The low tone in your trunk, making it impossible for you to burp easily. You are plagued by air bubbles, also caused by your cp, influencing the way you swallow and gulp air at the same time. Your body tightens, fighting the pain but making it harder to release that air I can hear bubbling in your belly.

I give you more water in hopes it will help. It doesn’t but I’m so thankful you are drinking. You haven’t eaten more than nibbles in two days, have had a fever for four. The cough comes and goes, at its worst at night. You have no energy but you can’t sleep because your tummy is in so much pain. I feel helpless. I remember when you were a baby and I rocked you in every way to get those burps out and you cried for hours. Sometimes I did too. Now your are almost four and here we are again.

We lay facing each other crying. Both exhausted and defeated. I think back to my life before you. There is no ache greater than that of being unable to help my child from the pain which overtakes him. No heartbreak greater than the feeling of not being able to help my child. All wrapped in a love which gives me strength to try again. And to let go of that moment of hatred for the cp that is a part of you and your beautiful self.

Five Minute Friday Rules, The Gypsy Mama

1. Write for 5 minutes flat – no editing, no over thinking, no backtracking
2. Link back here and invite others to join in.
3. Please visit the person who linked up before you & encourage them in their comments.

OK, are you ready? Give me your best five minutes on: Ache

Ever since I found this blog I’ve wanted to do her Five Minute Friday posts, but have never taken the time. Today, while Seb slept on my chest in between tears, I did it.

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8 thoughts on “Five Minute Friday: Ache”

  1. I have been worried about you and Seb. Worried about how badly the pneumonia was messing with your baby boy and if the CP meant you had to worry about even more side effects that would also cause him pain. I wish I could make it better. I so do. There is nothing worse than a child crying and knowing you are helpless to do anything. I am sending you all my strength and just praying that he (and you) get some rest soon.

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  2. Thanks Gemma. I’m resting with Seb, but he’s not resting as much as he’d like because of being so uncomfortable so I’m carrying and rocking him a lot. The CP certainly makes it easier to even get pneumonia. But the air bubbles are awful. He’s also having a lot of dystonic movements because he’s so exhausted, which means his arms and hands keep moving and he’s scratching his face and sometimes his fingers get stuck in his mouth and ouch! Poor guy.

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  3. Oh, this makes my heart ache. My nephew–now 27–also has CP. It’s such a hard journey. Lifting a prayer for your strength and his relief. Love to you.

    (Here from Gypsy Mama)

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  4. I just love your smile. I found myself writing about something I hate too. My daddy’s Alzheimer’s although I was much more vague. It’s still hard to voice the words I hate. That is truly an ache. Praying for you this moment.

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  5. Sorry to but in on the thread, your little man is gorgeous and I hope he gets better soon! I came across your website as my 7 week old baby boy has just been diagnosed with what the docs think is dystonic cp as a result of meningitis he suffered at 2 weeks old. We have no idea to what extent and at the moment are shell shocked as I’m sure you’ll understand! All we can do is wait and see and just keep positive and from looking at your blog i have some hope for the future xx

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