This isn't my blog, it's Zack's. Zack arrived here seven weeks early, he had no heartbeat and wasn't breathing. He suffered catastrophic damage to his brain, he has cerebral palsy, problems with his hearing, vision and feeding. Our lives are both challenging and extraordinary. He is a gift. I hope that for whatever reason you find yourself reading this blog it can go some way to help those in the same situation and some way to remove the cloak that covers parenting a child with disabilities.
Saturday, 27 February 2010
"Oh, errrm, hello your back
Two nights last week both Dan and I have been out. Not together. No, we have been doing our own thang. Well for me both were social for Dan one social and one work event. So the two sets of Grandparents got to babysit.
Baby-sitting for us means me leaving a thousand instructions for them repeated at least fifty times before I put my coat on to leave the house. They both, very patiently let me dribble on even though they have managed to raise myself and Dan past childhood and into adulthood without any major accidents or injuries.
Tuesday was Team Gould's turn. Zack usually goes to bed about 8.30pm and has his little light show on. generally falling asleep at about 9pm. I then feed him without waking him (aaaah the beauty of a PEG fed baby) at about 10.30pm. So off I go to meet some friends for a spot of gossip and eating of food. I return at 10.15pm to find one wide eyed young man sat up on his Granny's knee. Zack looks at me as if to say "Oh, errrm, hello your back, yes, errrm, hi there, I seem to be still up, did you have a nice time? I'm having a super time."
"And what is he doing up?" I enquire
"Well" answers Granny Gould "we did put him to sleep and then we heard him coughing and he's had something in his throat so we brought him down here. We let him lie down on the couch and he started laughing. Oh he's been laughing and smiling away."
"Hmmmmm." I looked at Zack. "Right, well, he's certainly worked out the trick here then hasn't he?"
I found it quite funny really. I don't know if he did do it on purpose but after they had gone he did have a little look see if they were still around and then finally settled down and went to sleep. No messing with me.
Thursday was Team Price's go. As they were baby-sitting earlier I said not to worry too much about him going to bed unless he falls asleep. I get back about 9.15pm and who is still up, the Pants, up but asleep, then he wakes up.
"What's this?" I say
"Well" begins Nanny Price, "He's only just fell asleep but you won't believe what he has been doing. He's been in his little room banging his bells, kicking his legs and laughing away to himself. He was laughing next to your dad. But I just can't believe what he was like in that little room."
I was starting to see a pattern here. Zack laughs, a lot, Zack stays up a lot. Still, it's good to hear that it's because of his laughing and not because he is screaming the house down. But come Friday it was bedtime as usual...but not before at least a thousand cuddles.
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