Dog tired

Today is the first day in a long time that I haven't left the house. The Yuletide run ended yesterday evening, and I had no errands to do today, so I've just been hanging out with the family. I haven't seen too much of them lately, and am enjoying being with them. In a few days, I'll be heading off for a few days alone, a sort of retreat for myself, so I need to put some family time in the bank. I have mixed feelings about my trip--my husband's recent diagnosis has left him feeling low, and he's felt trapped alone at home while I've been working, but I really feel the need for some refueling of myself. Before I met my hubby I spent a lot of time alone. During that time I felt very lonely, but looking back, I realize that I needed some of that time alone to recharge myself. So I'm taking a three-night trip to an inn in southern Indiana--two whole days to sit quietly, to sleep, to read, to play with crayons, to watch movies, to practice Tartini and Kreutzer, to think about the changes in my life.

I am working my way towards living in some sort of normalcy. It seems impossible with the threat of loss so close, but I look back and see that I managed to deal with the initial diagnosis of autism for Grace, and was even starting to be okay with her subsequent mito diagnosis. I am not happy about these things, but I can accept that they are part of my life. So I suspect that, given some time, I will also be able to absorb my husband's diagnosis and symptoms. Kevin told me the other day about Seneca's analogy of the dog tied to the cart--is he happier if he fights against the inexorable movement of the cart or if he just trots along behind it? I'm resolved to trot as well as I can. My life may be full of difficulties, but it's my life, and I am better off just accepting the bad along with the good.

Coping strategies

I have been silent on this blog for a long time, as I have been focusing my writing in my daughter's caringbridge page since we got news of her mitochondrial disorder. This week we were told that my husband's muscle biopsy confirmed the presence of the disorder in him, and in a very rare form, which has yet to be fully explained to us. I'm feeling the need to write more for myself again, not so much as a reporter of our miserable prognosis. I'll still keep up the cb page, but hope to spend time here more regularly.

Typically when we get bad news, Kevin crashes right away and then comes to grips with the change of outlook fairly well after a few days. As his foil, I usually function fairly well for a few days as my adrenaline sets in, and then fall to the pit of despair after reality sets in. I am currently in that pit. I recognize that wallowing in self-pity does no good for anyone, and so I am casting about for ways to get myself climbing upward. I tried a trip to Target yesterday afternoon--that was unhelpful, and I even barked at a (theoretically) sweet old lady who unknowingly cut in line ahead of me. I have the unfortunate fault of lashing out when I'm unhappy, and it doesn't serve any purpose other than to release my frustrations for a moment, and thus hurt those around me. I have at least become more aware of this pattern, but I'm not quite able to prevent it when I'm this troubled. In my search for comfort, I consumed some yummy but not good for me foods. This also failed to improve my situation. So I spent some time thinking: when I keep myself busy, I'm less likely to feel down, and doing something nice for someone can also elevate my mood. So I came home and attended to some chores that needed doing, and baked some banana bread with chocolate chips to give as gifts. I do feel somewhat better now. Perhaps keeping busy is just another form of escape, like reading a good mystery novel.

I'm feeling distinctly un-Christmasy. I've played about 16 of the 25 Yuletide shows I'm scheduled for. I love the African Children's Choir, but even they seem somewhat jaded as we approach the last week of shows. Coupled with loss of sleep, my scrooginess causes whole shows to go by with little attention from me. I have started thinking up some fun pranks for the last show, a tradition in the orchestra, and that helps to make the time pass. However, I'm not sure whether I'll feel right about instigating mischief that day, as I'll be sitting concertmaster, and want to set a good example.

Bah Humbug.

Mitochondrial disease

My daughter's blood tests have ruled out everything except mitochondrial disease. She has had a biopsy, and we'll know the results in June. For more information, please check out our caringbridge page.

We're struggling to absorb this monstrous diagnosis into our lives, and are trying to find what the new normality is. We used to worry about who would care for Grace after we die, but now we would do anything to have that worry back. The thought of life without her is staggering. She has become the center of our lives since day one, and now to know that she will be ripped from us too soon is unbearable.

I find some comfort in doing everyday tasks, which gives me the illusion of having some control over our lives. I also have experienced a strange new appreciation for some of the music I play at work. Somehow music does really have meaning in all the meaninglessness. Each moment is filled with the potential for beauty or communication. Each moment I have with my daughter is the same.

New picture

Here is a photo from Grace's recent birthday--I can't believe she's four now!!!!  We gave her some not-so-typical gifts, including her very own laundry basket.  Her face just lit up when her daddy carried it in!  Mine did too, because now I have my laundry basket back!!

Calgon, take me away!!!

 This week, a vacation week for me, has not so far shown  signs of being vacation-esque.
  On Sunday I had to break my mother's heart by canceling our visit to NJ because of Grace's poor sleep and health of late.
  On Monday we took Grace to the neurologist to discuss the not-really-autistic symptoms she has:  feeding problems, including dysphagia and oro-motor dysfunction;  severe gross and fine motor skills delays (about 3 years behind) accompanied by hypotonia; general fatigue and lack of energy.  We went in with info from the interwebs about "global dyspraxia", but he herded the discussion towards some more testing to learn more about where the genes went wrong. He tested her reflexes, and they weren't there. He recommended several blood tests and perhaps a muscle biopsy if the tests show mitochondrial disease as a possibility.  We said that we could accept that Grace have a little needle pricking if he felt it was in her best interests.  Then we went home and looked up mitochondrial disease.  We were horrified to discover that this could be our worst nightmare--cell death, possibly leading to blindness, deafness, and then death.  We have since then (without success) tried not to think about this possibility.  We have to wait another 6 weeks or so before the test results are back.
On Tuesday after school, we took Grace to Riley to have blood drawn.  This was  not fun for anyone within a 5 mile radius.  It took about half an hour to draw enough blood from her shrieking, flailing, straining, surprisingly strong body to fill the never-ending row of test tubes.  On the way home she let us know in no uncertain terms her feelings about being held down and subjected to pointy objects.
Today, Wednesday, was to be another quiet day.  I had some time to visit with some friends and have lunch with another friend.  After a leisurely walk, I checked my cell phone, only to learn that it had run out of juice.  I arrived at home to hubby rushing out the door saying  "I guess you don't know--"  Grace had cut open her face against a table edge at school and had to be taken to a doctor, where they opted for Dermabond instead of stitches.  Reports are that this procedure was not fun for anyone within 15 miles.  I walked in to see that the left side of my daughter's face was still covered in blood, which we weren't allowed to clean up all the way because the Dermabond was still setting.   Tonight we have to wake her up every four hours to make sure she doesn't go into a concussion-induced coma.  She acted pretty much like herself this evening, but a little more clingy, and a little less likely to climb on the table.  She vomited once.
  Tomorrow's a day away!!!