A Confirmation of Serious Concern

At the primary care physician, I received confirmation that my assessment of the seriousness of the boys' muscle disorder is correct.  While we wait for the muscle biopsy, I know that this cannot be minor.  We went in for a routine check now that the boys have been discharged from intensive feeding therapy.  I took the opportunity to relay my understanding of the neurologist's explanation of what we may be facing.  He confirmed, indeed, that the Gower sign at age six does not portend well.  We are seeing symptomatic boys now, and won't be facing a condition that presents itself at adulthood.  The prognosis is not likely to be minor.  Whatever the specific disease, we will have to face the implications before they grow to adulthood - if they grow to adulthood.

Oddly, I'm serene about the implications.  I'm not in denial.  I passed that two months ago.  Now, I have a sense that I've always known, but didn't get this feed back from any of the doctors until we met the neurologist.  I can see myself in ten years facing a radically different life than now.  All the challenges now may seem so easy.  It's been difficult now.  It's been exhausting.  I may not have the strength to keep the boys in the home during the worst of it.  I never thought before this year that I could have entertained such ideas.  I would have railed against it with my dying breath two years ago.  Now, my untethered thoughts lead me right there.

Not every family can hang together during the worst of times.  It's not a failure.  It's not a mistake.  There's nothing wrong.  In fact, it can be so very right to allow one's children to get their needs met, even if that means placing the children into hospice care in an institutional setting.  I used to think such families were heartless.  Now my untethering of my mind allows for more love than I used to think possible.

Life doesn't always have adhere to conventional appearances.  Sometimes, what looks like everyone else is desperately wrong.  Sometimes looking wrong is doing the right thing.  Loving well - loving deeply - usually means looking beyond convention to the people behind the structure.  Looking at the people who have to live under the rules can reveal that the rules don't serve the people.

I love my children and want another story for their lives.  I want to hear that I've been on an emotional journey during the first quarter of 2013.  I am prepared that this may not be the case.