5 more days

As you know if you saw my Facebook post yesterday, our doctor changed the date of Vivian's rod surgery from August 28th to September 2nd. We understand why he did it: he will stop performing these surgeries in a couple of years, and before that time he wants to do a good many of them with the doc who will take over. The doc who will take over is not available on August 28th. A rational decision. Even so, we were crushed my the news, Vivian especially, and me because of that.

Vivian is a smart person. When I told her the news she did a quick calculus and realized the following: 

1) "They've taken away all of my progress. I felt like I was almost done, and now I'm back to four weeks again!"

2) This will put her in Salt Lake City on the first day of school ("I know I wasn't going to be there on the first day, but now I won't even be close to the people in my class!")

3) This will be difficult ("Don't they know I'm just a kid? Why can't the other doctor change his schedule on the 28th? What's more important than getting me out of this halo on time? They don't know what it's like to be attached to something for a month!")

4) This means that Grandma and Auntie Joyce might miss her surgery (they had already bought tickets for the earlier date). 

She said all of this, asked all of it, in the most plaintive way, and she cried a lot. Later in the day we went through it again, and this time she got angry. She cried, sure, but she also kicked her walker and raised her voice. 

I sat there with her and let her cry and rage, and I told her she was right on all counts, and I told her I was just as upset as she was. I also tried to show her the bright side, which I really had to reach for, but perhaps it's true that the delay will give her soft tissue five more days to stretch, and that that might give us a slight improvement when the metal goes in. And it's certainly true that it's in her best interest that the other doc be there. A nurse reassured her that her surgeon would never make such a change unless it were in her best interests--and this is true; he's a lovely man who has helped Vivian avoid surgeries all this time until now. Another nurse told her that everything happens for a reason. You know that I hate those sayings; I simply don't believe any such thing is true. There's no "reason" for 200+ girls having been stolen from a school in Africa and sold into sex slavery other than depravity, inhumanity, evil, hatred, cruelty, self-interest, and greed. There is no light to be had, no silver lining to every cloud, or if there is, I don't care to point it out when the cloud is so very, very dark. There's inhumanity in that. 

Even so, I let the nurse's assurances wash over Vivian and me. Earlier that day I had given Vivian my own version of how the universe works, and it wasn't so different: sometimes we suffer, and it's a very long time before we can see how the suffering made us stronger or better. (I also believe that sometimes we suffer, and nothing good comes of it, ever, but I don't want that to be the case for Vivian.)

She asked what's been hard for me. I told her that I haven't had to spend time in hospitals or casts like she has, but that I had a mean and frightening father. I told her how scared I used to be and for how long, and that's why I won't see him even though he lives in our very town. I told her that my father's behavior taught me what kind of a mother I wanted to be, which is a great mother, and I told her I think I am a great mother to Vivian. I told her she is lucky, that she has good parents who love her and protect her, who would never try to scare her or hurt her. I said, "Five weeks is a long time to wear a halo, and 25 years was a long time to be afraid of my dad." That soothed her somewhat. She wanted not to be alone. She wanted to know that other people have had to bear what feels unbearable. She is only 7.

My cousin Jenny came to visit yesterday, a bright spot in a gray fog of a day. She and I went for a short walk, which did me some good. Jen delivered a beautiful china tea set that her mom, my Auntie Joyce, got for Vivian. Apparently my mom will bring homemade cookies when she visits--she arrives Saturday!!--and we'll have a tea party. Vivian loves the tea set. It has fairies on it, the real ones, not the Disney version. It is beautiful and civilized, and so are we now.

They put Vivian's bed up on blocks in the morning because she had hit the 9-lb mark (today she'll go up to 10), and she was being pulled up too far toward her headboard at night. Now the bed looks like this:

If there's no photo there it's because the wifi is so sketchy that my gmail will not even open, so I cannot retrieve the photo. Good times.

One thing that is driving me crazy during the hospital stay is that I can't keep track of all of our stuff. Yesterday when my brush wasn't where I thought it was, and I had to walk back and forth between the parent room and Vivian's room a few times before locating it--and all I wanted to do was to dry my hair--I lost it. I punched the bed five or six times in a fit of frustration. And, of course, in doing that my hand clipped the edge of a beautiful beaded necklace our friend Sheila had made for Vivian, and beads flew everywhere. I sat on the floor and cried, and then I crawled around picking up beads. I found them all and will get the necklace repaired when we get home, but now I have to tell Vivian what I did, and it's more bad news. It's the little things that lift our spirits, and it's the little things that make us fall apart. And this is because of the very big thing we're contending with that we're powerless to do anything about, not only the halo and the surgery rescheduling but also Vivian's diagnosis of progressive infantile scoliosis. It is a tough disorder, the most serious of the spinal problems, according to Mike Pond. And my little girl has it, and we have to do all of these things, and there are no reasons--it's idiopathic--or guarantees, only best efforts and hope. 

Maybe today will be better. But my gmail will not load, and so I cannot include pictures. This is the kind of small snafu that makes me want to scream. How taxing can it be on a wifi system to load gmail? How is it possible that I cannot so much as share a photograph right now? If you were here I would show you the bed, and I would show you how we rearranged the room and how cheery the window looks from the outside--I posted the wrong window the other day--and I would introduce you to Vivian, and we would play a game or go get breakfast.