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Breathless

March 14, 2015
Well, some say life will beat you down
Break your heart, it’ll steal your crown
So I’ve started out for God knows where
I guess I’ll know when I get there

I’m learnin’ to fly
(Learnin’ to fly)
Around the clouds

But what goes up
(Learnin’ to fly)
Must come down
Must come down but

I’m learnin’ to fly
(Learnin’ to fly)
But I ain’t got wings

Comin’ down
(Learnin’ to fly)
Is the hardest thing
Hardest thing,

-Lady Antebellum, Learning to Fly
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(Image is of the back of Mary in a kayak on the lake near our home.)
It’s been a long time since I’ve shared here about what’s been going on medically with Mary, mostly because, for a  long time, it seemed there just wasn’t much to tell.
“She’s stable for now. Enjoy this time,” the doctors would tell me. And so we have been. We were somewhat blissfully living in a state of denial, trying so hard to forget all the dire predictions that seemed to be thrown at us when she was younger. She’s been doing so well, seemingly getting a little stronger each day. She spent her summer and fall spinning on every ride she was tall enough for at a local amusement park, kayaking, playing in the sand at the beach, relishing her time on her swing under the trees in our yard, celebrating her birthday in Walt Disney World….Enjoying her time.
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(Image is of Mary laughing while watching the Hoop Dee Doo Musical Revue at Walt Disney World.) 
And I guess a part of me knew that the fear couldn’t stay away forever. I knew we were living on borrowed time, but it was so easy to enjoy it all….  At the same time, a part of me was waiting for the other shoe to drop….
When she was younger she had what appeared to be staring spells, but that was the extent of them. They seemed to fade away when we restructured her routine to give her more rest and nothing ever appeared on any of her EEGs. So I tried to put it to the back of my mind.
But now, things have changed. We have started seeing much more noticeable events, so I talked to her neurologist. A new EEG showed what we feared: seizure activity that was not there before. Something new. Something measurable. And now it looks like these events may be happening multiple times a day. In fact some of these seizures we may be completely unaware of, and some may be much more dramatic..
We still don’t know what is causing any of this, but where she was considered “stable” just a few months ago, it would seem we’re not so stable any more. There are multiple medications and supplements to administer where before we were just monitoring. And a part of me is glad that we’re finally doing something, but my heart is breaking for her. And I’m afraid to breathe. I feel like we’ve reached the top of the roller coaster, and I have no idea where the tracks go from here….
I’ve hardly told anyone about this yet, because I am so afraid of what it might mean…. So maybe we can deal with the seizures, but why are they happening?…. Is this part of the disease progression?…. Will they get worse?…. What’s next?… How fast does this roller coaster go?….Questions I can’t afford to think about for too long…. Words I can’t utter out loud with three children at home… How do I even begin to explain this to her sister and brother? I can’t… I just can’t….
Before we found out about all of this, one of her doctors recommended Mary for a Make a Wish Trip. I started to argue the point,  “but she’s stable right now…. she’s not dying…”   “Exactly. That’s why she should go now, while she can still enjoy it,” the doctor responded.  Because these doctors seemed so sure that she wouldn’t stay stable….  So some amazing volunteers came out to the house and helped to plan her wish, combining two of her favorite things, Disney World and Christmas. Paperwork was filled out, gifts were given to the kids, and plans are now underway to get Mary back to Disney World in December to see the Christmas decorations… while she can still enjoy it…
For a while there, we were doing so well…. the doctor’s appointments had become so routine…The constant fear, the constant worry had dulled a bit….. We were making plans, and enjoying life, the way a family is supposed to…. But this has caught me off guard…. I’ve gotten so used to monitoring everything, that I just assume that I’m overreacting when I see something… I expect it to be nothing, but best to report just in case…. This time, the truth was worse than I thought….
Suddenly all the old familiar fears have circled back in, and I feel so completely alone, all over again. And somehow I have to find a way to keep that at bay…. Somehow I have to find a way to smile, and respond with the obligatory “fine,” when folks ask how I’m doing… Because, really, who wants to hear all of this? And, honestly, I’m tired. So very tired of living this way… I am so tired of supporting everyone else’s causes… Everyone’s got something, right? Everyon’es got a ribbon to wear… all we have is some unknown thing that is causing mitochondrial dysfunction in my baby, and stealing her from us a little at a time… There is no ribbon for that. There is no FaceBook group for that…. There is just this horrifyingly lonely dark place where no one knows what is coming next…
But life goes on, the world keeps turning, and I am trying desperately to keep our family’s world intact. This past week was Joyce’s birthday. She is eight now. She wanted a dog, a pet of her very own. So, on the same day that we found out that Mary was having all of these seizures, I took Joyce down to the local animal shelter and she picked out her new friend.  He is perfect for her and she is thrilled. Over the weekend we got to see Disney on Ice, and then this past week we all went snow-tubing at a local ski resort with our Girl Scout trip. The world has to keep turning. One foot in front of the other. Because we could stop, and dwell, but that would be time wasted…. And time is just too precious.
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11 Comments leave one →
  1. March 14, 2015 9:47 pm

    I believe in miracles even when things look bleak. I also believe that medical help and cures are coming in leaps and bounds. I believe there is hope. I pray that a whole bunch of miracles and cures are **”dumped” upon your family. (**I mean this word in a good way).

    • March 14, 2015 9:53 pm

      Thank you PJ. I am hopeful. I am just feeling so floored and overwhelmed by all of this. I guess I am grateful that at least we are doing something now, but in a way I just wish we could take the future for granted like other families do… Thank you. Prayers are always helpful. xoxo

      • March 14, 2015 9:55 pm

        I completely understand the feelings of being overwhelmed. My goodness, who wouldn’t? I really do hope and pray for miracles for your family.

  2. March 14, 2015 10:03 pm

    Praying for Mary and the rest of your family.

  3. Hilary permalink
    March 14, 2015 10:22 pm

    I have no words, but I do have lots of xoxo’s. Sending you lots of love, my friend.

  4. Lori permalink
    March 14, 2015 11:53 pm

    NEVER give up on miracles! They are out there- keep praying and know that you are not alone-Im here if you need to vent, yell, cry or whatever! I know the pain you are going thru and it sucks! But never give up hope-you are not alone!

  5. Joan Minear permalink
    March 15, 2015 1:08 am

    I am so sorry this is happening. It is vey painful not to be the fixer . Where the hell is that dam silver lining when you need it !! All the kids couldn’t have a better more dedicated and devoted mom. Love you and pray for you Joanie

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