This is a post I’ve been meaning to write for some time now, and I think it will take a few read throughs and edits before I am ready to post it. Read through and edits aren’t something I typically do with my posts – I want them to be an expression of what I am really thinking at the time – but there are posts that need a bit more careful consideration, and this is one.
Underlying themes for this post:
- My life since Kate has been derailed. Not slightly. A lot.
- Making this statement isn’t a quest for sympathy, and it does not mean I don’t love Kate or have regrets.
Since Kate my life has been derailed. I am a planner by design. A forward thinker. A list maker. I don’t dwell in the past but am always moving forward. I have high expectations of myself and what I want to accomplish over my life. I expected my life to follow a certain predictability – with change along the way and some unexpected events. Was this naive? Doesn’t everyone make a plan they expect to be able to follow. Derailed is the best descriptor I can think of to the past 6 1/2 years.
Nothing about life since Kate has been predictable. The very nature of her disease and related illnesses are profoundly unpredictable. We don’t know if she will having a vomiting episode at night, if she will be unsteady and pale in the morning, if she won’t be able to cope with her school day because of extreme fatigue, if we will have to run into CHEO for help…each day, moment to moment is unpredictable. We don’t know what this disease will bring, and neither do her medical team.
And with that uncertainty we try to manage our daily lives. For me, as the mom, the primary caregiver for Kate, the case manager and coordinator, the keeper of records, the medication administrator, the seizure monitor, the laundress of vomit covered linen, the therapist, the chauffeur, the nurse, the researcher, the nurturer, the comforter…it meant my life changed significantly. Kate became my full time job.
I did not return to my career as public servant after maternity leave. We were always in crisis and still trying to diagnose Kate while managing an impossible health care system that seemed not able or structured to provide the support a child like Kate needed. I had little sleep and was constantly managing a sick baby. Work? It wasn’t even a thought.
Worry? Yes, I did selfishly worry about my career and advancement as a public servant. Like I said – high achiever – eye on being a senior manager (Director General by age 40 was the focus). I wondered when I could get back to working hard and moving ahead. I worried I would be ‘forgotten’, that all my good work, long hours, and dedication would be forgotten. I was reassured that wouldn’t happen, that I was “too good” and had “strong managers who would remember me”. So I went from 3 month leave to 3 month leave. Constantly extending, and hoping that in the next 3 months things would settle down with Kate and I could return to work. At one point I did attempt a return to work when she was 2 years old. She’d had a period of stability for a few months, and so I attempted a return starting with the minimum allowable 2 days a week. The week I returned, Kate was hospitalized. The following months, she would be hospitalized or unwell for most of the time. Six months into my return, we were planning a major surgery for Kate with Sick Kids. Kate was not sleeping still, she was regularly sick, she was not growing well, and the caregiver I had for her was unreliable at best. I lasted 8 months.
I left feeling disappointed, frustrated, and worried. I did not qualify for EI as I had a job, I just couldn’t work. There are no EI supports for parents in my situation. We really couldn’t afford for me not to work, and had to make the decision that our line(s) of credit would have to help support our household bills. I realized that things were going to really change for me. I clung to my benefits and kept taking short leaves and extending them regularly.
I was off of work for 5 years when I heard the federal government was “adjusting it’s workforce”. I was on leave, my Director was on extended sick leave and I became a number. I had no insight to this process since I was no longer on the inside, and I knew that I was likely to be a target. I was no longer the ‘go to’ employee, or the policy analyst that was up coming. I was a liability. I had been on an extended leave, and I was forgotten. I wrote an exam in attempt to keep my job. Kate was unwell at the time and in and out of hospital. I was ‘surplused’ two weeks later.
I returned to federal government work 1 year ago. I was fortunate to find a position, choosing to return rather than take a ‘package’. It has not been perfect, and it has been at 3 days a week – which seems to be the most I can handle with the unpredictability of Kate’s illness, frequent clinic appointments, therapy, and tests.
I no longer want to move up in the management echelons. Actually, it is not a matter of not wanting to, I have a lot of desire, but I realize that my life simply won’t allow me to do that type of work – and there is no appetite to support the possibility. And it hurts. It hurts to see colleagues who are moving along while I am left behind.
I am not yet sure if I am seen as an asset at work. I try to focus and get things done at the rate I am used to, while at the same time fielding phone calls from Kate’s school about her being unwell, planning with her medical team, or making appointments with her therapists. I squeeze in the ordering of medications, supplies, and set up meetings. Some days I am foggy from fatigue, or overwhelmed with stress or worry about Kate. I am still working my ‘other’ full time job.
I still think about working a 4 or 5 days work week. Wondering how and if it could work. Then I wonder if that is what I really want to be doing. It can be easy to get ‘excited’ about work and really engaged at the end of my three days. Then I come home, and Kate is having a good day, and we go for a walk or to the park. I wonder how long this ‘good day’ will last, and how many more ‘good days’ she has, and I remind myself why I am working part time.
Today, a good friend and colleague asked me, “What do you want to do?”
Simple question. And rather than thinking about it in depth, I answered quickly and narrowly within the context of my current role in government. But the question has stayed with me, and I am really pondering it, “What do I want to do.”
It’s a tough question, and I think what I want to do – what I can do – what my life situation will allow me to do – present a reality that I have to learn to live with. (Again, not searching for empathy here).
What I have learned about myself with the experience of this life so far is this:
– Solid footing may not happen for me. It may always be an unpredictable and stressful life.
– I need to learn how to minimize the stress and highlight the positives.
– I have to take breaks. I cannot go at the same pace all the time.
– I have to really think about the skill set I have, and what is possible.
– I need to have an income.
– I want to feel inspired by my work and know that it is making a difference.
– In all of the above, I need to consider my job of caring for Kate.
My full time job.
I am not sure what the future holds. What I do know is that Kate is my priority. Keeping her as healthy as she can be. Keeping her happy and ensuring she has the best life she can for as long as she can.
That is worth more than any paper I can push.