Traction

Traction, traction, traction…

Where is it? Where can I find it? How do I hold onto it?

The thoughts that travel through my mind the past few weeks.

Things are slippery and out of control and following no particular pattern. The unpredictability compounded by the worry, anxiety and stress, is exhausting. Where is the solid footing?

Just when things seem solid, like we are establishing a routine, like Kate is on solid footing, things go awry and our world centres around Kate’s health and all is else is pushed aside. Routines fall apart, meals don’t happen, morning breakfast is rushed, walks to school turn into drives to CHEO and ‘shift’ change between Brian and I. Jack sleeps with whichever parent is home. He is anxious and worried about his sister. His homework is left up to him and he makes his school lunch as I rush around gathering items to take with me to the hospital. He is 8, and I worry about getting ourselves on track as soon as we can for his benefit – and Kate’s – and ours.

What happened to family moments? In September our anniversary, and the first day of school for Jack. October, Hallowe’en was missed. Brian’s 43rd birthday this past week? How do so many family moments get pushed aside? How do they slip away and fall to the side?

Why is Kate cycling so much? Why is this cycle prolonged and never-ending? She has never really recovered since her September episode. Fatigue and low energy plaguing her for much of the last 2 months. We were doing well, and coping and in a solid pattern. Who turned back the clock and brought us back to serious episodes every few weeks?

What is this disease? Why does she have to suffer from it? Where are our answers? Where is the treatment? What is the cure? I want to be strong. I want to get through it, and stay strong and do all the right things for her – and for all of us, but there are so many moments of feeling like I am falling through a rabbit hole of just trying to catch quick breaths as my head sinks below the water. We looked so long for a diagnosis. We have it – and are we further ahead? Where do we go from here, from 1 of 4. I can’t even wrap my mind around that. What does that mean?

Endless pokes to introduce a needle into her body that will allow her to be hooked up to a machine that will deliver fluids and medication to help her get through this latest episode. Tests, exams, results that my tell us something new but never deliver answers. Episodes, a word of my own design to describe an event that wreaks havoc on my child’s body on a regular basis month after month. Never really knowing or understanding exactly what is happening to her. Hoping that what we are doing is the right thing. Wishing she could tell us.

I know we all want normalcy. I recognize there are others who have it worse, who have it different, who are searching for their own stability and solid answers in their lives – and then I realize there is no comparison, only perspective. All I can wonder about is our own journey and where it is taking us and trying to understand it and trying to keep the three most important people in my life safe, and comfortable. It’s a simple thing to want, Solid Footing.

 

Julie

4 Comments

  1. Hi Julie — That was a heartwrenching post with no answers in terms of the injustice of it all — to all of you.

    I didn’t understand what you meant when you said “from 1 of 4?

    I am convinced that you always have, and always will, do the very best you can for Kate. xo

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  2. Julie, you are a woman of incredible strength, you have learned and done so much for Kate, for your family, for yourself with your running. Keeping all the balls properly balanced in your juggling act, called your life, is a true feat with the challenges you continue to face. Yet, you are doing that and you are inspiring so many other people in the meantime. Thank you for that. I continue to keep you in my prayers. Do what YOU need to do to get through this difficult time and know we all admire your tenacity and devotion to your family. I applaud you.

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  3. This post has haunted me since I read it (late at night, right before bed when you posted it). Absolutely heart wrenching. I am hoping you can figure out the trigger(s) for her episodes and stabilize your lives. My heart aches for you. Know that I am thinking of you often and hoping for better days going forward!

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