People say knowledge is power.  

I think I understand that today in some ways, though, perhaps it depends on how much knowledge.  I’m learning that just a little bit of knowledge can be destructive, but a little more can bring peace. Even if it’s knowledge that breaks your heart, or that confirms fear.


In the last entry, I explained how Trevor’s neurologist, Dr. Butterfield, determined we need to move in another direction after Trevor’s latest neuro exam.  Trevor was showing new developments; additional weakness, loss of reflexes in his ankles, and the most significant– problems with proprioception.  That test that I described to you where Trevor had to stand with his eyes closed, and he’d sway and fall?
Turns out that’s called a ‘Romberg’s Test‘.  A positive Romberg’s test indicates a few things, some of which include various peripheral neuropathies (which I already knew about), and something really ugly called Friedreich Ataxia. I hadn’t come across Friedreich Ataxia in previous research, so I started reading about it.

And the Duchenne-fear memories came flooding back.

My heart sank.  
Friedreich Ataxia not only sounds an awful lot like Trevor in the earlier stages, but it is cruel. It would steal my son’s ability to walk by the time he was in his teens, maybe 20s.  It could steal his life by his 20s, maybe his 30s.  He is our Bubba. That is a Very Tough Thing to think about. 

I began to obsess. For days, I spent all of my spare time reading every single thing I could find, looking for videos, desperately searching for stories of diagnoses in children. Wishing someone would describe WHAT LED UP to their child being diagnosed…  or wishing someone would have posted a video of what someone with EARLY stages of FA looked like when they walked.  Instead, all I could find (like dystonia) were medical journals and articles about it, or a few vague stories of children with FA and what their lives are like *now*, or what it looked like when someone was so progressed in the disease that they could barely walk anymore.  It wasn’t helping. This is the INTERNET for crying out loud!  Aren’t I supposed to be able to find oodles of information on everything in the world?  I felt frustrated, helpless, and consumed.

I’d try to stop, knowing it wouldn’t do me any good to keep obsessing, but I NEEDED something … anything… that would tell me that yes, Trevor might have this, or no, Trevor can’t possibly have it. 

 Not being a neurologist myself, this was a lot to ask of my amateur inner-‘House M.D’.

So I emailed Dr. Butterfield and simply asked — Is FA something that is ‘on the list’ as possibilities for Trevor? It was a long shot, I figured he’d a busy man and I’m sure he doesn’t want to encourage crazy parents to email him at every little stray thread they go off on… but it was worth a shot.

He emailed back today.  He confirmed that yes, FA is on the list. 

He also assured me it’s not time to panic, as other less insidious possibilities like Hereditary Spastic Paraplegia are still in the running as well.  He said the EMG will tell us a lot– if it’s still normal by now, then we can rule out FA. If it is abnormal, then we will move forward with genetic testing for FA.

For a moment, I thought I was going to fall apart a little. I mean, he confirmed it. It’s a real possibility. He sees it too.  

But then, I calmed. I realized that just by him taking the time to respond and respecting me enough to be honest and forthcoming with scary information, a huge burden was lifted off my shoulders. I no longer have to play amateur detective, searching for clues and guessing if they match Trevor.  I already know — they do.  I have read more than enough to know what that diagnosis would mean. All I can do now is wait for the next piece of information in March when we get the EMG, which means I can give Google a rest.
In this moment, I am deeply appreciative of his neurologist.  I notice that doctors and specialists tend to hide the scary suspicions from parents until they know more, after all, why scare parents unnecessarily? But in something like this that has gone on for so long, I NEED information. I don’t WANT anyone to hide these things from me anymore.  Just be honest with me, treat me like an intelligent adult who wants to be informed about this entire process.

It is my son.

Dr. Butterfield not only took the time to email me back, but he trusted me with the scary stuff, treating me as an intelligent adult to be armed with information, not a hysterical woman to be protected from stress.

It helps me let go a little bit. 

It may be fine. Trevor may not have this at all. We could be in for another year of guesswork and a nameless ‘condition’ that is affecting him.  Or we could get some pretty scary news.  Either way, the teeny amounts of knowledge were quickly making me crazy, but a bit more knowledge has given me power to let go and just…. wait.  

I have a friend who really knows how to lend an ear to me, but not feed my inner crazy. She has a way of saying the right things at the right time, knowing what a fellow Mama needs to be reminded of.  She told me today, 

“Just enjoy him and your family in the moment, and cross that bridge when it comes…
Take this next month to build the energy and courage you need to face the next battle, whatever it may be.”

And that, friends and family, is what we will do.

Written by jackie