16 October 2011


So, I read this story. A mother’s story about her baby who is 18 months old and will probably die before he is 3 years old. I saw it because it was a link on facebook. Posted by a friend, a cyber friend whose son came from the same orphanage that Julia came from. She also has a daughter from China, a perfect, beautiful daughter who is losing her sight. She commented about perspective and living day-to-day. I read the article and perspective was the first thing that popped into my head. We both have children that are or will be falling outside of normal. We fight for their potential, for their possibilities, for their futures. I think we are both scared, but we both know that we probably have tomorrow. I don’t know how, especially after losing David and this past month feeling so little control over Julia’s body, how the day-to-day feels like in that mother’s shoes.

Julia and I went pumpkin picking today. We went to a place that we had been to before. Not last year, but the two years before that. I remember, hardly remember last year. Still, so numb but determined. I was not determined this year. I asked Julia if she wanted to buy pumpkins or take the hay ride to the patch and pick them out. She wanted to ride the wagon and pick her pumpkin from the ground. And so, we went. She picked a very small pumpkin. She could carry it. It did not have a prickly stem. She made quite a fuss about that last year. She remembered and still doesn’t like the prickly stems but was much more careful about what she picked out.

We go to the particular place to pick pumpkins because it is a safe place for Julia. The people who own the farm donate a day’s worth of profit to an autism group because they have one son who has autism. We usually try to go on that day but it was so early in October and the weather was still so warm that I didn’t really feel like it was time yet. But going there at any time is comfortable. People who work at the farm are generally kind and attentive to Julia. She talked to the guy who was driving the wagon and he answered every one of her questions. Even the one about the dinosaur. The woman at the popcorn stand helped Julia to carry the very full bag of popcorn by herself, and did it in a kind way. I don’t think that Julia notices much of this kindness but I do. I appreciate that she/we are not stared at when she speaks louder than is appropriate or when she wants to play in areas that are designed for younger kids. Am I imagining this? The accommodating feeling of the place. I don’t think so.

Julia had a hard time getting to sleep tonight. She is still in my bed and I am still laying down with the computer while she goes to sleep. Tonight, it was taking too long and when I asked her if she was picking at her skin, she admitted that she was. We went to the bathroom and re-bandaided and went back to bed. I asked her if my arms around her would help her get back to sleep and she said, yes. I held her until she feel asleep. Part of me feels totally defeated. This is many steps back. But part of me feels that if this is what healing must look like, then I am here for it.

I am still bandaging and bandaiding. I have stopped counting bandaids. It was too depressing. The number was not changing quickly enough. After almost a week on steroids and with everyone on heightened vigilance, Julia’s skin is beginning to heal but nothing is completely healed. When the doctor said 4-6 weeks she was not kidding. We are in for the long haul.

Stock tip: Bandaids!

Quite unexpectedly, I have become intimately acquainted with Julia’s body. My experience with kids’ bodies is one of intense caring when a child is very young and then a gradual backing off, allowing for a natural development of self-care, modesty, and privacy. I have never been as intimately caring for Julia as I would have been had she been in diapers when she came to us. Recently, I’ve been backing off more and more, asking her to bathe herself and dress herself most of the time. The picking stopped all of that. It is not always easy getting tights and socks up and around bandages and bandaids. And I’ve been washing her with soapy hands and not wash clothes to avoid any rubbing on delicate scabs. And I spend a lot of time putting on bandaids in places like her butt and her upper legs. I can hope that the touch is as healing as the medication and bandages that I apply.

Julia is fast asleep beside me and I should doze as well. We are in a dance of healing we two. A few steps forward and another few back. Some to the side and some on a diagonal. The path is anything but straight and who knows what is coming around the corner but I can be and do whatever my girls needs.

And a few new pictures of Day 5 renovations in the House blog.

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