I have come to realize that change in my life is not a hurry up and happen but a process that I have to embrace and live the best way that I can. Ryleigh was discharged from the hospital 3 days after her surgery. We were all very excited at the progress she made. Her surgery was not as challenging as they had originally thought so the recovery was much easier on her than the last two. Also, the pain management team really worked hard at having her pain free the first couple of days which contributed to less anxiety and resulting discomfort.
On Thursday, Ryleigh had an appointment with the GI team to discuss why she was feeling so yucky. I believed that she had some active disease in her stomach and mouth that could be corrected by some oral meds and then she would have everything managed ready to go back to school in a month’s time. However, things never really go as I imagine – gee do you think? The GI team wanted to discuss the MRI Ryleigh had of her small intestine. I was quite surprised by what they told me. Her small intestine is now diseased and inflamed – quite severely. In the last 3 years Ryleigh’s disease has never been in her small intestine – that has always remained clear. Until now, this disease is not letting her have a break. So, it was decided that she will be taking methotrexate once a week and beginning Remicade treatments once again. Evidently, Remicade does not work as well on diseased large colons but has more positive effects on the small bowel. I believe that these treatments plus her oral meds kept the disease managed previous to her colon being removed. So, I believe that she will get better now that her colon is removed and starting the Remicade treatments. These treatments are done through an IV and need to be done in Vancouver. She starts on August 13, then August 27, September 24 and then every 6 weeks after that.
I have realized that the process of our lives is not the urgent doing things quickly kind of life but one of time, effort, and energy to live a full and happy life. We are learning how to live from suitcases, cook meals in ill equipped kitchens, sleeping on pull out couches and air beds, etc…this is now our life not a means to an end.
I think the last few years my family has been living with the hope that once Ryleigh got better we could resume our regular life. The reality hit me this week that we all have chronic illnesses and that life may not get better but it can be better if we accept the way things are and enjoy, embrace, challenge ourselves to live as fully as possible. My question to Chloe and Ryleigh this week was: If this is as good as it gets…what are you going to do to live YOUR life the way you want to? I have asked myself the same thing. I think it means to not put the things on hold that you enjoy and care about but to integrate them into the life we now have. Being present and active in our lives by BEING not DOING.
So, with the news that our Ryleigh is facing another round of treatment to improve her physical self we are all looking at ways to improve ourselves through art, humour, activity, and connecting with those we love and respect. We will embrace the frequent trips to Vancouver like we are visiting our second home — that it is not a burden but a part of what our lives are.
In a previous post- a comment was made about being a hospital mom. I read on facebook the distances families travel for the child’s hockey tournaments, ski trips, riding camps, camping trips,music fieldtrips etc. We are doing the same kind of travel. Instead of a hockey mom — I am a hospital mom. There are the same concern for finances, travel time, energy, and stress but we still do it anyways. The only difference is this is not a choice for me but I see it as the best thing I can do to help my lovely girls move on with their lives so that eventually they can do the kinds of things that make them happy.
Change is really a process. A process that consistently keeps me thinking and honouring.