Snow + Toddler = Happy

You have no idea how much this means to me, being able to go out into the snow and play with Little One without worrying what it will do to me. Heck, being able to do it at all. You see, two years ago if I wasn’t going from one hospital to another, from one doctor to the next in a desperate attempt to find a diagnosis for whatever was wrong with me, I was laid out in bed experiencing various degrees of paralysis: muscular, respiratory, and cognitive. Two years ago, this was me. Well, that isn’t actually me, but that was what I was experiencing day in and day out, only we had no idea why at that point. As we were preparing for our first Xmas with Little One the prevailing motif in our house was panic. My first winter with Little One was experienced primarily through photographs, videos, and stories told by my enormously overworked and overstressed wife.

One year ago, we at least knew what was wrong with me. It took nearly a year to find a diagnosis, but now we knew that I had Hypokalemic Periodic Paralysis, a extremely rare neuromuscular disorder. Why it chose now to manifest itself we may never know, but there it was. Through a convoluted physiological process involving adrenal responses and ion channels the cold would leave me paralyzed, forcing me to perform complicated risk analyses before daring to venture outside. I wanted to go out with Little One for sled rides and snow angels, but doing so would likely come at the price of the next couple of days immobilized. Needless to say I missed so much that winter, more often than not watching through the windows as Little One wobbled in the snow.

But today, following our first real snow of the year, things are different. Of course, I can not just rush outside with reckless abandon; a bit of caution and preventative medication is still needed, but I can play. We can make snowballs, and topple, and I can even pull Little One down to her favorite cafe on her wooden sleigh. After everything that has happened over the past two years it still seems extraordinary that this is possible. While there are still so many big things to sort through, none of that seems to matter today. Today, Little One and I toppled in the snow and I got back up.


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5 Responses to Snow + Toddler = Happy

  1. 1
    CaraQuilts says:

    I had no idea! Having an autoimmune disease that they still can’t define I have some knowledge of what you must have gone through. I don’t become paralyzed but I do experience incredible pain, weakness, etc etc.
    I’m so glad you were able to find something out so that you can experience the simple joy of playing with your child in winter! It makes it so much sweeter because you know what it is like not to be able. You will never take it for granted.

    • 1.1
      tknauer says:

      You have my profoundest empathy. In so many ways the not knowing, and thus the difficulties in treating, was the worst part for of it all. Well, not really, missing so much was the worst part. But in so many ways I feel so lucky to have a diagnosis at least now and a means to at least manage things. Each week I still seem to be reclaiming small pieces of my life. With any luck over the coming weeks and months I will be reclaiming some of the larger chunks and looking forward to sharing the news with my new-found fabric community.

      As always, fingers crossed…

  2. 2
    Dr. S says:

    This post makes my heart beam, and not just because Matilda is so splendid. I am watching and cheering from afar, even though I have been quiet.

    • 2.1
      tknauer says:

      Thank you. We miss you, you know. Can’t wait to see you again. Visit! Visit! Visit!!!

    • 2.2
      Dr. S says:

      I miss you all too! I am soldiering through stuff. Someday, I fantasize, my head will be more above water than it has been this year, and then I will invert your child before she gets too big!

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