Disclaimer: Hoping this post reads well. The neurons are not firing on all cylinders these days.
Something happens when Kate has an acute episode of illness related to her mitochondrial disease. Life seems to slow down immensely and takes on a very focussed purpose. The analogy of ‘putting on foot in front of the other’ is the best I can use to describe the sensation. Managing her through each moment of her vomiting – cleaning her off, changing her bed, taking sheets, towels, pyjamas to the laundry room, administering meds (and deciding which ones to give), trying to settle her and repeating it all again throughout the night and into the next day. Each of those steps is a moment. Eventually deciding we need to go to CHEO for care and treatment, and absorbing that decision – that we make so often – and the implications and the stress that it brings with it – it becomes another moment. I pack her bag like I have done so often before. I cancel the week of appointments for the entire family, I call school, I cancel therapy, I cancel personal plans like the long awaited visit to the hairdresser or dentist. I call into work and tell them I won’t be in.
Everything that is not about this moment of Kate being sick is no longer relevant. And then I dive into the world of acute illness and supporting Kate. I turn inward and rally my strength, contain my tears, and help her get through yet another round of bloodwork, procedures, and IV pokes. I sit with her and stroke her face or hold her and rock her just being in the moment. Our medical team comes and goes, our social worker, a therapist, another CHEO friend may stop by – they help to give a brief reprieve from the moment – and then the focus is back to Kate.
Those first few days when she is acutely unwell she sleeps most of the day. We are usually in a room with no windows. I turn the lights off to let her rest. It is like a cocoon and any sense of what I should be doing that day falls away as I watch her sleep. Over a few days she starts to feel better and then managing a little girl who wants out of the hospital, but still needs to be there, becomes my moment. Minute to minute, builds into hours of entertaining her and keeping her in her bed – maybe breaking things up with a walk and some visiting to the snack shop or cafeteria. The routine is usually the same. Then we get home, and life still does not return to normal because Kate is still recovering and not feeling like herself. Crying, whining, a need for constant attention become the new routine. My six year old who is more like a 3 year old. Carrying her because she wants to be held. Constantly waking at night for comfort or because she cannot sleep due to some sort of unidentified discomfort that she cannot tell me about. But the act of living in the moment cannot be sustained forever, and though she is still unwell and needing care and attention, life slowly starts to creep back in and the pace steps up. All those things that were set aside now return immediate attention. Not little things like the hairdresser and a coffee date with a friend that were cancelled, big things like the urgent priority at work, medical appointments for Kate, banking and taxes, booking summer camps, commitments made that were delayed, groceries. It doesn’t matter that I am exhausted, that I haven’t slept, that my child is still not well. Life has to start back up and demands my attention.
Coming back from the month of February has been an act of floating and sinking at the same time for me. Kate was steadily unwell from early December and undergoing regular tests investigating what was going on with her. February resulted in two typical childhood illnesses, a mild stomach flu and a common cold, that landed Kate in CHEO and caused her to be very unwell. The month was spent in and out of hospital, and sleepless due to constant care day and night. I started floating, living in the moment of caring for her – which is the only way it can be done. At the same time, I was sinking as responsibilities piled up that I did not have either the time or energy to address. Once Kate was home and feeling better, I thought I should set aside the time in the evening to catch up, but found I simply couldn’t focus because I was so tired. My brain is simply tired and thinking through the tasks of my ‘other job’ having just arrived home from work feels impossible. The effect of fatigue is profound. I sink and the pile builds. Kate has pulled me into a pattern of not sleeping, so sugar and caffeine have become my companions struggling to find the energy I need wherever I can find it. I get done in my day what I must, and sometimes I get done what I need to do to get by. I start considering what responsibilities I can set aside.
What I know I need, I cannot figure out how to get. Respite, time from Kate to catch up on our life, to feel settled again, to get into a routine again so that I can catch up on my rest. The resources for respite are slim, and often already booked. Rogers House has been an amazing resource for us, but I don’t leave Kate there when she is unwell. I don’t feel it is fair to her when she needs us. In fact, I did book Kate at Rogers House this weekend and was so looking forward to it, but we were bumped for an emergency admission. My heart sank.
There is a great motivator for me to get back to a better state, and that is Kate. This disease is endless and it is relentless, and above all it is predictable to the point that we know she will be sick again and soon, we just don’t know when. Our family has lived with SIFD for six and half years. It hasn’t changed, it hasn’t been cured, it is not something Kate will grow out of (my least favorite question). It is with us, it is part of our life and implicates itself into any and all of our plans. I have to find a way to deal with the sinking and the floating. I don’t think the answer can be living in the moment. I think it needs to be planned and systematic and disciplined – but how do that amidst the exhaustion and the sinking/floating feeling. Sometimes you are just to tired to know what you need.
I can see how long term caregiving wears on families and on individuals. I worry about that for me. The comment ‘I don’t know how they do it’ comes to mind, but I already know the answer to it, ‘Because you have to’. It has been six years, what will the next six look like for me? I know I need a better plan.
How will I deal with constant trauma and stress that comes with parenting and loving a child with an ultra-rare disease which will likely take her from me?
Is it really just a matter of moving from moment to moment.