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.