Cerebral Palsy, Friendship, Our Son

Chubby Fingers and Good Friends

Sebastian falls asleep in my lap, after his night-time feed. I still feel blessed that he decided to breast feed just before we left for Egypt. It now lulls him to sleep when he is unable to succumb to exhaustion. I ignore the parent gurus who say ‘don’t let your baby fall asleep on your breast.’ I don’t think they had a baby in NICU for two and a half weeks who came home with a feeding tube and the only option was the bottle for three months. Which meant routine breast pumping sessions. So, I think that I will breast feed Sebastian whenever he likes, thanks very much. But I digress. Back to the sleeping part.

I stare in awe at Sebastian’s chubby fingers on his open hands. When he sleeps, his body relaxes and his hands open. The type of CP he has is ‘turned off’ while he sleeps, so his muscle tone is likes yours or mine rather than tensing when excited or upset. Sometimes he has little tremors in his hands. This has been the case since he was born. I don’t know why and I don’t worry about it. It’s one of the things about him that is different from other babies and I love it. It’s cute, even if it’s not ‘supposed’ to be that way.

Sometimes when I check on him before climbing into bed myself, his hands are folded on his chest, center, in prayer position. It’s the cutest thing EVER. During the day Sebastian’s default position for his hands is in little fists. This is due to the CP. He can open and close them and is able to grasp and let go of things, which is great. But he doesn’t hold onto things for the appropriate amount of time, either too long or too short. So we are working on that in OT now. And because his default position is in tiny fists, I miss seeing his fingers. Last night, I just stared at them. Then I slowly ran my big adult fingers over his soft, chubby, baby ones. And then to his toes. Anyone who has had a baby knows how amazing tiny little fingers and toes are.

It feels good to write about Sebastian exactly the way he is. The way he has blessed our lives with his smiles and laughter and triumphs over small challenges. I have appreciated each comment and email since posting about Sebastian’s CP. Thank you for your support, encouragement, and love. Our lives are better with you in it. And I can’t wait for you to meet Sebastian someday and see how amazing he really is.

I leave you with a picture of him sleeping, it’s not current. But I couldn’t resist. He is about 5 months old in this photo with chubby fingers and toes in view.
Big Boy Sleeping


3 thoughts on “Chubby Fingers and Good Friends”

  1. Kara,
    My sister directed me to your website months ago. I must admit that I follow it weekly. Your entries are always beautiful. The way you appreciate life and all you have is rare. This entry today made me cry. I’m not sure why, but it did. It was a good thing. Although I don’t have a child with CP, I can relate to the tremendous feelings of love and the joy you feel in staring at that precious sleeping baby. Sebastian is blessed to have you as a Mother. You are truly one of a kind. Oh, and the breastfeeding…you definitely have to put others thoughts and opinions aside. I still nurse Finnian at 16 months old and have no intention of stopping until he lets on that he’s ready. I’ve had PLENTY of comments…even “oh, you’re grossing me out”. You are a stong woman to stand by your ideals no matter what others say. That little Sebastian is getting the best of you!



  2. Kara, I’m thinking of Sebastian being able to feel and know how much you love him and it must be overwhelming for him (in a good way). I hope that when he is older, he can read this post and other posts to see how beautifully and poetically you love him.


  3. Baloney! The best advice I ever got or read or heard is that YOU know your child best, so listen to your heart and own mother’s sense rather than the gurus and other experts. I am envious that you are able to breastfeed this long, and that he sleeps best doing so. Nothing relaxes my James better than feeling my breath in his face and hearing the beating in my heart, and that is probably why he loves to lay his head on my chest, no matter how uncomfortable this position is for both of us.


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