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Monday, January 12, 2015

Our Hypotonia Journey - Life With a Diagnosis

For the last two years, I have been at peace with not knowing the reason behind Cecilia's hypotonia. Some people will tell you that there does not always have to be a cause for the low tone.  Others will adamantly claim that there's always a more specific reason behind the hypotonia. But even without a concrete diagnosis, I had found comfort -- comfort in hypotonia and comfort in not knowing.

Without a diagnosis, I had found the comfort of a Saturday afternoon with nowhere to be -- a day perfectly designed for lounging on the couch with only a good book and a mug of coffee or Netflix and a blanket.  And slippers and sweatpants; yes, I had found a slippers and sweatpants kind of comfort.

But then the doorbell rings, or the coffee gets cold, or Netflix stops working, and life begins and you are forced to leave your comfort behind --sometimes momentarily and sometimes for good -- because life, REAL life, isn't always about being comfortable.

Last week, my life began again -- in a small exam room, right past a bright orange hallway.

The neurologist, sitting across from me, for the first time in two years, casually mentions a possible diagnosis, but the look on her face is anything but casual.  And I'm suddenly anything but comfortable.

As she mentions her game plan -- MRIs and orthopedics --  I find I'm no longer comfortably reading that good book.  "Connective tissue, " she says and "hypermobility," she utters and my coffee is now cold.

When she types that she will "see us back in six months," I realize that means I have to leave the comfort of that "no diagnosis couch" I have been enjoying for the last two years.  And that idea scares me.

I feel insecure and worried and unsure. I long for my sweatpants and slippers but feel as if I'm being forced into heels.  And yet, I know that I can't stay on that couch forever, because as much as a diagnosis doesn't change the important things -- like my love for my daughter -- it does play an important role in helping us meet her needs.

So I move forward off of the couch and away from the book and the coffee and the comfort, and I thrust myself into a new world -- a world with a diagnosis -- because I know that while comfort is beautiful, it can also be limiting.

And while this world with a diagnosis is different and new and -- at times -- uncomfortable, I am ready to give up my sweatpants and slippers and try on something new.  Besides, my legs do look pretty darn good in heels :-)

Waiting for Neurology


  1. Hello kindred spirite! I feel as though I have been searching for a blog like this for a year and I have finally found it so thank you. I don't know you but I do because I am going through the exact same thing as you and I feel as though you have taken all the thoughts in my head and heart and put this on paper.. Your blog is beautiful and I feel as though we are both trying to cope with this in the same way. I also have 2 children (loic (3) and Sam (1) and it is my youngest who is hypotonic. I never could have prepared myself for how difficult this would be. I love both my boys more then anything in the world but yes netflixs has become a very close friend of mine (and jogging pants). I know its kind of weird cuase I don't know you but I really have been searching for another mother who is going through the same thing as me (the neuro appointments how I dread them, hate them) , someone with a positive outlook like yourself. If you want to chat a bit (via email, Skype) it would be so great to share our stories and just the daily hardship with someone who truly truly understands! Please email me You can check my profile on facebook for pics of my little ones and me:) I hope to hear from you so that we can support eachother on this hypotonia roller coaster!!!

    1. Chrystal thank you for sharing! It's comforting to find others out there who "get" what we are going through. Have you checked out the Hypotonia board on FB? It is an awesome source of support and answers. I highly recommend it :)