Thank you all for visiting the Blog and for your patience in finding this ‘official‘ first post. When I launched Searching for Solid Footing a couple of weeks ago, the plan was to write a post about once a week. Writing was on my ‘to do’ list last week, but got seriously over run by a less than ‘solid footing’ week. KK (my daughter – and the nickname you’ll see in lieu of her name in this and future posts) had an episode (see Episode Description post) that landed her in the hospital for the better part of the week. Labour Day weekend was a disaster, as was the first week of school. It might be worthwhile mentioning that KK has had an episode every labour day weekend since she was born – 5 years running. Someone casually mentioned to me this time – as we were hastily being driven home from a friend’s cottage – that we might not want to plan trips or excursions on Labour Day weekend. Noted.
Our emergency department visit and admission to hospital were as ‘standard’ as they get for KK. She is ’emergent’ when she arrives at hospital – considered a priority – and we get excellent attention. To get to this point has taken some significant time, and will require a separate post to describe that incredible journey. What did change during this visit is the progression of KK’s disease – a rare form of mitochondrial disease. So rare that she is 1 of 4 children in the world today who are known to have this condition. We found out during this visit that there are additional things happening to her body during an episode that now have to be watched closely.
We know that KK’s mitochondrial disease is progressive and degenerative. We have heard those words time and again. I feel like I am now almost immune to those two words because I have heard them so often they seem casual, usual, and typical when describing KK. When I do think about those words, I know they are not that – they are not usual – and I feel sad. So I don’t often think about the meaning of ‘progressive and degenerative’. I get into a mental space of hearing the doctors, analyzing the information they are sharing, considering and weighing the importance of the information I am hearing, and deciding (on some unconscious level) how worried or stressed this information will make me.
It is a balancing act and I am grateful that for me it has become instinctive and innate. I am thankful that it is in my nature to take in a great amount of difficult details about my child. Details that are painful and scary. Details that no parent should ever have to hear or consider. I am grateful that I can hear these details and accommodate them quickly. I can sort them and file them in my mind and keep them out of my heart and soul – for now. I can talk the ‘doctor talk’ and discuss the importance of these details and the impact they have for KK now and in the future. In fact, I have been often asked as to whether or not I have a medical background – Am I a nurse? – Am I a doctor? – Do I have medical training?. No, I respond. I just have a strong understanding of what is going on with KK and a need to know and understand more. I can also stay calm (most of the time) and prefer to know more than less.
I have been told that I am ‘strong’ and that I am ‘brave’ and that others could not do what I do. I am not sure that is true. I say I am not sure – because maybe I am different. I don’t often cry when KK is in crisis, or when we receive bad news. I have always had a way of adding that information to my knowledge of KK’s disease and moving forward. It doesn’t immediately go to my heart and to my soul where I can be so seriously wounded that I might not have the ability to focus on what is important. KK. I worry that if I let the emotion overtake me I will miss something important.
I like to think of my ability to be brave as a skill. I am skilled at being able to compartmentalize things, and I am very skilled at being analytical and in prioritizing information. I envision a sort of box where I store and sort difficult information so that I can examine it later. I think this a survival instinct of many parents who have children with complex medical conditions. You need to be able to focus quickly and not become overwhelmed with emotion and the stress that goes along with a chronically and often acutely unwell child. You need to be able to store information instinctively so that you can think about it during a time of quiet and reflection.
What is equally important to being strategically strong is the need to be able to empty this box regularly. You need to not only examine the information you have stored there, but you also need to be able to release the stress, worry, sadness, fear, frustration and negative energy that get stored away with all the medical details, doctors comments, diagnostic test results etc. You need to find a way to let that release happen. For some people talk therapy is an option, while others may try a type of meditation. For me it is both.
I run. I run hard and I run fast. I need that energy release and I am grateful that I found running as that outlet. The ladies I run with – and other significant friends in my life – are also there for the talk therapy piece as well. My running partners often joke that they know KK has been unwell when the pace picks up significantly on our morning run.
They help me regain my solid footing.
Thanks for reading.