By Tuesday things were ramping up as we had a full on day that for me ended at 9pm. We had cleaners in for the first time ever and I was so impressed by their work! They folded towels, made beds, did the dishes plus the usual cleaning. I could so get used to that. The only stress being making sure the house was tidy and organised before they came.
By Wednesday I had hit my wall. I had pushed myself so far and for so long it literally felt like I had no energy left. I was running on coffee and nothing else. Each night I was awake until 1 or 2am thinking of more jobs and then getting up and doing more and more during the day. Wednesday was like my body saying stop or it will get worse.
So today when I woke up feeling slightly better I thought we would have a good day. L and I went to the shops and got the ingredients for a roast for dinner. For once she was happy dragging a basket behind me and didn't run off. Yes, I'm thinking it's a good day. When we get home for the first time I see L engage in proper imaginary solo play. Not involved with anyone else she goes up to her Barbies, loads them in a car and pretend drives them around. Hallelujah what a milestone that is.
While playing I take Mr J's bed apart, nearly knocking myself unconscious as 1 wooden pole lands on me. Then I pull the base and mattress from our old queen bed and put them in his room. By this stage L has that delighted look on her face of Mummy's going nutter doing jobs so I'm going to run under her feet and "help". She loves being in the middle of the action even if I worry about hurting her.
By this stage my energy has gone and L is rubbing her eyes. We get ready for nap time and I say my usual "nigh nighs I love you". She says back love you. OMFG I have waited 3 years to hear those words. My other kids said it so early and often that I missed it so much with L. Just last week I told a friend it was the one thing I was holding out for.
My beautiful gorgeous bubba says she loves me. I swallowed my tears and floated through my day. They say love cures all.....
Hi, I'm new to your blog and found it searching for ataxic CP, which I think my son could have. It's so hard to find information on this and I'm only getting blame from the doctors for my son having slow weight gain and developmental delays, no help in figuring out what the cause is and treating the symptoms. Anyway, I read your post on the gastro appointment. Have you all been tested for celiac disease? I have it and b12 is an indicator of damage to part of the intestine. I get cracks in the corners of my mouth when my b12 is low.
ReplyDeleteThanks for reading :)
DeleteYes the kids have been tested for celiac and given the all clear. Although L doesn't eat much in the way of solid foods so it wasn't very accurate.
Getting a diagnosis of cp is a slow hard journey and I wish you all the best. Im happy to answer any questions you may have. I have a facebook page too.
Vanessa