Too Much Joy to Be Angry Today

I just watched my daughter run down the street.

I'm trying not to cry again as I write that as I wasn't sure I would ever get to see that again. I was all set to write an angry post about the murder of Dr. Tiller in a church of all places, but there is no place in my heart to hold anger right now. I just watched my baby girl run down the street.

We took Tiny Daughter M to a new specialist today who recommended a totally different course of treatment. I was more than a little skeptical when he said that her neurology had healed and was normal, she just didn't know it yet. She didn't look like her condition had healed. Only three weeks ago her mobility had a major setback when she went off of the steroids. She still can't walk right without assistance so it never occurred to me to tell her to run. Baby girl can run. The new doctor wants to discontinue her physical therapy and make her run as much as possible, including the soccer team she has wanted to join so very badly. He said the magic words to me today. He said, "these always get better. It may take up to 18 months, but they always get better." No one had been able to tell me that before today. I was scared to believe him and get all of our hopes up, but it was such a relief to talk to someone who seemed to know what was going on and who could offer hope.

The doctor and I colluded to bribe her with getting her ears pierced once she can walk normally at full speed again. She is much more motivated with a goal and we need her mind to catch up with her brain. She was able to touch her toes this evening, which had been impossible even two weeks due to both balance and flexibility. (Sorry, I was drawn away for some impromptu jump roping in the living room. Most exciting jump rope event ever!)

Going into today's appointment, I was 75% focused on how to fix the Tiny Daughter and about 25% thinking about how, as a family, we would cope with having a disabled daughter. How would we make sure her life was still rich and full and unlimited? Today is the first time in about a month that I have felt that she is really going to be OK. She made fun of me for crying as she ran back hope, but that's OK, too.

Tiny Daughter M is on fire tonight. She is so excited to be able to really play and run and to enjoy moving her body. She is not 100% there, but the look of joy on her face as she ran back and forth down the street tonight was the most beautiful thing I have seen in a long time. The world is still an imperfect and frustrating place full of inexplicable evils and sorrow, but tonight I watched my daughter run down the street tonight, and that's enough.

New Treatment

We have finally started a new course of treatment for Tiny Daughter M. We are putting her on steroids and I am not thrilled, but at least we are actively doing something to try to make her better.

She currently has two specialists who disagree about what she has and how to treat it. Thankfully, we have ruled out anything life threatening, but one doctor has concerns that this might be a long-term problem. The other one thinks that if we leave her alone she will get better by herself, but that trying the steroids won't hurt. The lack of agreement is not encouraging to say the least. Every medical professional we have seen has told us how unusual her case is. Also, not encouraging.

A friend recommended today that we take her to Seattle to the children's hospital down there. I don't mean to panic, but it is starting to sound tempting. We will give this treatment a shot first and I know S, my wonderful husband will keep me from panicking too much. Thankfully, my boss has been totally great about the time I've have to take off for all of her appointments. I don't know how I would deal with all of this if I has to worry about losing my job, too.

It encouraged me that she has been such a little trooper about everything. She doesn't whine or complain about not being able to get around very well. She just looks for other ways to do what she wants and enjoys what she can do. She is a very good role model for her mother.

MRI, Take II

I am on the way to take Tiny Daughter M to her second MRI. Neither one of us is excited about this. It is times like this that I miss believing in God. I don't believe in petitionary prayers, but it would be nice to feel like I could do something. All I get to do is hold onto her foot while she slides into the big, noisy, scary tube and wish I could take her place.

In good news, she had her first physical therapy appointment and she really liked it. Now she is looking forward to Tuesday mornings.