Friday

I keep starting entries and then not writing enough (really, not enough) to publish and never getting back to them.

So, today is going to be different! oh, I hope so.

I have had the most luxurious morning. I went to the gym and a team of gardeners (3) came over to my house and took care of my garden. Now, I know why rich people have gardeners. I'd have one on my staff for sure! They weeded, cleaned and edged the beds and raked the lawns hard so I can plant grass. Now, I can pick up with a bit more weeding and start mulching and planting. This just may become a wicked habit in the spring.

David saw his surgeon yesterday -- the 6 weeks visit. This was a biggie in terms of how active he can be, but really for the docs it was just a matter of making sure all was going as it is supposed to. David is now allowed to drive -- and he wasted no time jumping into the driver's seat -- and can work part time. He is going to start working next Tuesday -- a few hours a day. He is aiming for 10 hours next week. We shall see.

The visit, however, had quite an anti climatic feeling about. A check of the scar healing, a check of the heart sounds, blood pressure and a few feels around the lymph nodes. That was it. And David was released from his surgeon.

He still has far to go -- the doc told us that within the next 6 weeks his breast bone will begin to fuse together. The transplant coordinator called this afternoon with word that his labs came back pretty good -- his biopsy again showed no rejection. The only glitch right now is with his medication, prograph, which is too high. They will repeat the related labs next week to see how he is doing. And there is his tiredness and spaciness and the shaking of his hands, all side effects.

David has been watching Julia and so do I. We don't notice any loss of purposefulness when Julia stares. Sometimes silliness. These are our reports for the coming neuro doc visit. I still have to find out whether the neuro doc wants to see Julia with or without drugs. She can stop the Adderall quickly but the Guanfacine will take time to wean her off. But then, what will she be like at school???

As for me, I am going to start doing things for myself for a while. Starting with the gym -- I so want to lose weight for all of our wedding travels. My metabolism is so low, I would go for weeks without food and put on weight. But I don't like what I look like. Again, I will try.

And Julia, Julia is herself. With an edge of defiance but with semi-willing heart. Her playing revolves around babies have mommies and the mommies take care of them. Sometimes the mommies are not kind. The babies make them better. Carnivores still eat each other and attack weaker prey, but there is more family play than guts and gore. We have so much to work out.

We received the life book that I composed for Julia. It is a photo book made by one of the services that do that sort of thing. I have been composing it forever, interrupted by David's surgery. When Julia got home from school, the three of us sat together and read the book. Julia asked some questions and did not flinch from the China pictures. At one point, she asked when we were going to get to Madison, Wisconsin, and thankfully, I finished the book with our moving to Madison and living happily ever after. She also asked if she had to go back to China, sort of the way one might ask if she has to eat something she does not particularly like. She took it all in and was rather quiet and patient. I wonder what is going through her mind.

Her teachers sent home a draft of her new IEP. Julia will be changing schools this year to Randall which is on the other side of our immediate district. I need to read it carefully for changes, if necessary, but already on an easy scan I see such goals as counting up to 30, using numbers in problems up to 15, and reading up to a level 8. I know that Julia is on her own time line and learning curve and there is no rushing her, but if she accomplishes these goals which are goals for her (maybe she will be a little further with reading but not significantly), she will not be finished with the first grade curriculum at the end of 3rd grade.

It is so hard to let go of an expectation of eventual normalcy.

Today, when I picked Julia up from school, she announced on the school steps that she was not going home with me and that she hated me. For a moment, I considered being embarrassed in front of the group of parents waiting for their kids, but because I do have the choice and I do thee days, I could kiss Julia on the top of her head and usher her to the car to go home, talking to her all the way. I watch other kids run out to parents with open arms, or have to tell mom everything about the day before they are off those school steps. I guess I have had that, and I did, and so it is the time for something different. Something different like on Monty Python. Oy.

I was talking with one of Julia's therapists when Julia was in the bathroom -- the kids takes for ever!!! -- and she told me that one day when she and Julia were outside drawing with chalk, she was trying to get Julia to draw one more picture. Ellen was coaching Julia to draw more, and Julia was refusing. A couple walked by the two of them and as they passed, the woman said to her partner, "If the child doesn't want to draw, she shouldn't have to draw." Ellen and I laughed -- I told her she should have replied, "Excuse me, Therapy!" It is interesting to see that more than I have the choice to be embarrassed or uncomfortable. Julia makes us all so very real.