Seeing the Value of a Running Narrative

At yet another meeting of a new professional for my eldest son, I was asked about his medical story from birth.  I tell this story again and again.  There is so much; it is so valuable to so many.  I can see that having our story in one location for them to read would save me so much time.  I could update it as we go.  While this is more for me and an anonymous form, I do need for us a way not to take up so much time each time we add in a new professional.  I don't know how we will begin this, whether it could be a caring bridge site or something similar.  Somewhere that I could give specific details, and would be password protected or even more secure would be an improvement.  Our story is only going to get longer and more involved.  At this point, the specialists may expand to beyond our local circle and become regional, national or international.  Going over it again and again is emotionally draining and mentally stressful.  It would be good to get it down once and pass out a way to access the information.  Then, I could post here my story in a different perspective for a different audience.  Not exactly repeating myself, but revisiting my story from different needs of my own.

I'll have to think on how to accomplish this.  When I would have time to write this way is anybody's guess.  If it helps, then I'll figure it out.

An Unwelcome Break From Therapy

Yesterday, I was disheartened to discover that the boys have to wait even longer to resume therapy.  We were supposed to attend to administrative details - outpatient evaluations - prior to discharge, or immediately at discharge.  Instead, we waited for two weeks.  When we finally walked in the door of the outpatient facility, I discovered that we'll be waiting much longer, because we didn't set these evaluations up weeks ago.  This isn't anything I've done wrong; the hospital was to have secured this before we left.  Then, we were to not miss but a week between therapy sessions.  As it stands, the boys will have evaluations over the course of the next week, then resume therapy sometime after that.  I'm not happy; they don't need to miss any time.  Certainly, from the intense level they required at the inpatient level of care to then wait for outpatient care is not in their best interest. Melchior's other therapist happens to be on vacation now as well. I've been happy to have a break initially to get settled into the new routine, but enough is enough.  Now, I'm frustrated with them not getting their needs met and it's out of my hands.  I can't do anything about this.  Yet another set back that we face due to institutional procedures.

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.