Tuesday, February 21, 2012


Next to me, as I type, is a stack of bills.  Actually, there are two stacks.  The first stack is the usual stuff....electric bill, car insurance, heat, credit card.  The ordinary household bills you might find in any home that are a part of everyday life.

The next stack is different.  This is my small mountain of medical bills.

Quest Diagnostics:  $213.00
ER visit:  medical supplies:  $88.45
Office Visit:  High Complexity:  $86.00
Outpatient Services, misc:  $155.24
Laboratory & Ultrasound:  $586.70
Office Visit & Consultation:  $346.89

These are the ones I have opened so far.  There are many more to open but I had to take a break and walk away.  I remember when Miss J. was younger and learning to add large numbers.  Because the numbers were  so large, she would get intimidated and would stop working the problem.  That is me now.

I know there are more bills in the mail, finding their way to my house.

In November, we had extensive genetic testing done.  Years ago I had decided to get off the testing rollercoaster and take a step back from the chaos that brings into our lives.  The only reason I agreed to put our family back on this wild ride was because of the changes we were noticing in M.  

Changes his neurologist called:  Subtle Functional Deterioration.

The changes in M have been subtle, so small that you won't notice them day-to-day.  Changes we can only see when we compare M to how he was many months prior. They are so slight, so subtle that initially we brush them off.  We chalk them up to being tired.  A growth spurt.  Recent illness.  But the months pass and these subtle changes do not return to M's baseline normal.  They stay with him and we begin to run out of explanations for them.  We mention it  in passing to the pediatrician.  We give it some time to "wait and see." More time goes by and then we are referred back to the team of "Ologists."  Tests are ordered.  Diagnosis' considered.

For M, we've noticed his gait is off.  His stance is wider and he's begun toe-walking.  His balance varies and he falls more.  His vision is changing.  Yearly eye exams have been upped to every three months.  He's developed a stutter and is having difficulties chewing.  He sleeps more and fatigues easily. The grand-mal seizure.

I observe him, trying to put together pieces of a puzzle that continues to elude us.  I try to see him not only with a mother's eye, but also that of a scientist.  Without emotion,  With logic and reason.  

His neurologist wants to do more testing.  His possible explanation: 
Spinocerebellar Atrophy.

There are more than two dozen types.  
All with differing ages of onset.  All with different prognosis.  
All genetic.  All degenerative.

The geneticist tells me there is no panel of tests for SCA.  Testing for each type would be done, one by one, until a diagnosis was ruled in or ruled out.  She adds that it is expensive and may not be covered by insurance.

The biggest gift I have received on my journey with M is to comprehend that when a doctor suggests "possible" it does not mean "probable."  In the early days with M, I would hear of a 'possible diagnosis' and it would send me into a tail spin.  I have read up on it and I do see some similarities, but not so much that I have convinced myself that this is the diagnosis.

I worry and people tell me not to think about it.  As if it were that easy.   Really?  All I have to do is just not think about it and all is well?  Sweet.  I do think about it from time to time...it isn't as though I walk around all day consumed with worry....but it does cross my mind.  I've read the words on paper and I have heard the doctor speak them.  They are on my brain.  It is like a pebble in your shoe:  the more you think about it, the more it bothers you.  But in this case, I can't just toss the pebble out.

Life with M is unpredictable.  We enjoy periods of smooth sailing and calm waters and we push through chaos and choppy seas.  Life is choppy at the moment. and I am getting tired.  Tired of appointments.  Tired of fighting with the insurance company.  Tired to tests.  Tired of the driving.  Tired of the bills.  

When I am tired and weary and overwhelmed and angry and scared, I draw inward.  Like a bird in a nest, I surround myself with a shell and shut the world out.  

I create a space between myself and the world to give my brain a chance to rest.  From the distance I can hear Mr. A calling to me, "S...let me in.  Please don't shut me out.  Let me be with you." 

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