It’s been a couple of months since my last post on this blog.
I’ve had a lot to write about. There has been no lack of ideas for content. I think I have just been overwhelmed with the how much I want to write about and how I want to write about it. Overwelmed. It often makes me disappear. When I don’t return phone calls, don’t listen to voice mail messages, get anxious about the size of my inbox, try to make ‘to do lists’ and then don’t get them done (as they get bigger and bigger), look around me and wonder ‘where should I start’…
Have you been there? Have you done that? (Please say yes).
I’m a pretty organized woman/mom/caregiver/advocate/employee. I don’t get overwhelmed easily. Or at least I didn’t used to. But it seems it happens more readily the longer I live this life of searching for solid footing in a redirected life.
I’ve learned to focus and to center my attention on the important things. I’ve learned to put one foot in front of the other and to just get it done. I credit running with teaching me this and reinforcing it. Maybe I should also credit Kate. Marathon running is very much about one foot in front of the other, focus, and ignoring all distractions (the pain, the ache, the anxiety). I think caring for a special needs, medically fragile/complex child also teaches this. I can’t worry about the next moment, I have to get through ‘this’ moment. This is particularly true when Kate is not well. Get through the vomiting, change-laundry-meds-settle her…repeat. Pack for hospital – focus on what she needs, and what I need for the trip. Get through the ED (emergency department), wait patiently, move her from one arm to the other even though my arms are screaming because she is so heavy. Focus on the moment, one more moment of holding her. Get through the inevitable IV – focus on the process, coach the nurses on what works best for Kate, ensure she is positioned and held properly, control the tears that will be sure to flow – both her and I (pain, and sadness of seeing her scared and in pain).
It is endless, and because it is endless it requires focus on the next step and no further. Know the plan – know your strategy but focus on the next step.
Running has helped me learn this focus.
April 15th, 2013 I ran the Boston Marathon. Running has been an amazing outlet for me. A focus that has given me an outlet. It allows me to connect with friends, push myself, to focus on something outside of my life with Kate. But on April 15th, something that has brought me such personal fulfillment and passion and sense of accomplishment, ended up being only 26 minutes of joy in my accomplisment. 26 minutes after I finished my race, the bombs went off. I don’t want to be melodramatic about the events of that day. I was safe, never at risk – nor were the friends who came to Boston to support me. We heard the bombs – we were a block away – but we saw none of the carnage and horror. When we finally realized the scope of what had happened – once arriving back to our hotel – we packed and left. We headed home to safety.
Boston shook me – there is not doubt. I was overwhelmed that week and the efficiency with which I handle my life went awry. I took a couple of days, but I recovered, Kate’s illness and her ongoing health struggles can sober a person pretty quickly. I had to get back to the task at hand. (And maybe I had to recover from the marathon just a little – my legs were a little sore).
The thing with mitochondrial disease – SIFD – is that in addition to chronic health conditions, it also affects day to day health. I can’t predict how Kate will be on any given day. Will she be happy, will she feel well, will she be able to cope with her day, will she end up in the hospital. The range is broad and wide – and unpredictable. The last couple of months with Kate have been just that. Up and down – and down – and sideways. There is no solid footing. Every day is a challenge and it requires constant shifting of priorities and focus. School calls to tell me ‘she’s not doing well’. We hand off continuously at home with a cranky, fussy, irritable 5 1/2 year old who can’t function and get through her day. We wonder what else we could be doing for her. Maybe we should monitor her diet better, maybe she’s not drinking enough, maybe she has pain, was that a fever (?), maybe the cardiac issues that are part of SIFD are affecting her, maybe her oxygen saturation is poor, is it the seizures (?)….
We simply don’t know. We only know she doesn’t feel well. And that is overwhelming.
The thing with having a special needs child who is chronically unwell is that life is never predictable – or maybe it is more that, as a parent, you are always worried if you are doing enough. Kate has been having a hard time lately. We describe it as a ‘mild episode’, where she has symptoms that don’t require hospitalization but which affect her quality of life on an ongoing basis. So what do we do with that? There is no medication to treat Kate with to make her more comfortable or to address/correct her severe and chronic fatigue. Her mitochondrial disease – SIFD – is the cause of the ‘spells’ of fatigue that lead to irritability, poor cognitive management, poor eating, poor behaviour, regression of her ‘skills’ (as her teachers and support workers describe it). And it can last for months. And it has lasted for a couple of months now.
The problem is she’s not sick enough. These aren’t symptoms that require hospitalization, though we have tried therapeutic IV hydration – which has worked in the past. This seems to pick her up a little bit for a short period of time, but the results are short lived. Then we theorize with her physicians about what her symptoms could mean and whether or not this might be a progression in her disease – SIFD is considered progressive. It feels like a vicious circle. We are all trying our best, trying for our best, but we simply don’t have an easy answer. We don’t know what to do to help her feel better.
And here we are. And this is why I haven’t written for some time. Focussing attention elsewhere, but still wanting to share. Thank you for waiting and for reading.