I’ve been blogging for CHEO Moms and Dads this month. Check out the latest at:
A shout out and very appreciative thank you to my friend Louise Kinross of Bloom for the wonderful article published in the most recent edition. Louise tells a bit of my story as a special needs mom to a medically complex and fragile child, and how I cope with the day to day highs and lows.
I didn’t want this blog post to turn into a new year themed post, or a ‘welcome 2013’ post. My intention is more to excuse the lack of posts for the past few weeks, and lag in posts late this fall. I think I lost some momentum there with Kate having a very rough fall and suffering repeated episodes of inflammatory cascade coupled with cyclical vomiting resulting in a few hospitalizations. Then we headed to Sick Kids Hospital in Toronto, ON to meet with yet a new team of doctors who are investigating yet another line of inquiry into Kate’s rare disease. Emotional exhaustion set in, and when that happens to me I turtle (so to speak). I pull my head into it’s shell and shut down what I can that is superfluous in my life. The good news is that it helped. I brought things back to basics for me and released expectations of myself. I went into a sort of ‘cruise’ mode, concious that I needed some mental and physical recovery time.
And now here we are all at the very beginning of a new year, and I can’t help but plan a little (it’s in my nature) and make a few ‘resolutions’. My resolutions are more areas I plan to focus on, or ‘states’ of mind I will strive for in the coming year. They are less strict goal oriented. I need to be able to bend and flex to the variations in my life that occur day to day. I have a blogger friend who chooses – along with her family – a ‘Theme’ for the year as her resolution. I like that idea and I think I’ll copy if for myself this year. It also fits very well with a inspirational post I read the other day.
So my resolution theme for 2013 is to live with optimism and to promise myself inner strength so strong that nothing will disturb my desire to think of, work for and expect only the best.
Do you think it is a lofty resolution theme? Too lofty?
Without defeating my resolution theme before the year 2013 has really begun, I am aware that this will be a tough one to stay focussed on. I know that my expectation of ‘the best’ for 2013 will be challenged. And really what does ‘the best’ mean? I think it comes back to optimism, and the appeal for myself personally is the desire to see the good, to live the good, to know that there are always good things even in the face of things like worry, frustration and sadness. Those are energy draining emotions and my hope is that with living with a focussed theme on optimism and challenging myself to see the good even in difficult situations, I can keep those at bay with focussing on the good.
I know it won’t always be perfect. Resolutions never are. That is their nature. But I am not looking for perfection, I am looking to remind myself as often as I can to see the best in things – ‘sunny side’ as it were.
As with most – all – things in my life, I extend this thinking into my life as a mom with a medically fragile and special needs child. Kate will challenge my optimism, but she will also buoy it. I think I will gain a lot of strength from watching how she deals with the challenges life hands her. I know I will learn to be more optmistic by emulating how she greets the challenges of each day.
I realize I just wrote a post on “Kate’s Story”, but I also wanted to update you on her birthday.
It was wonderful.
I got over myself and reminded myself of what was important. October 11th started off as a difficult day, and then I reminded myself that my little girl deserved a fun and happy birthday – not a brooding and morose mom. I think blogging about it and sharing my sadness helped a bit. So I pulled it together. Baked cupcakes, gathered loot bags, organized crafts – and we had 2 birthdays. A wonderful family celebration and dinner on her actual birthday, and a little ‘friend’ party Saturday morning. It was lovely, and fun, and special, and Kate knew is was about her. She may not have understood ‘birthday’ and all the trappings that go with it, but she understood her ‘friends’ were at her house to see her, she definitely got the idea of ‘gifts’ and tore into them, and I think she may even have understood that those cupcakes on fire (with candles) were especially for her.
It was beatiful and perfect for Kate turning 5.
The Children’s Hospital of Eastern Ontario – CHEO, has started a blog for CHEO parents by CHEO parents. They’ve put together a great roster of bloggers and I am proud to say that I am one of them! If you have some time, take a moment to visit my first blog post at Being Prepared for Your CHEO Visit
I’m really looking forward to blogging for CHEO and sharing my insight as a mom to a medically complex special needs child. I have spent a lot of time at CHEO with KK, and I have a lot to say and share as you can imagine. I’d also love any ideas you might have for blog posts.
What do you want to hear about?
What questions do have as a parent visiting CHEO with your child?
If you are not a CHEO parent but have general questions about hospital visits, please share them with me and I’ll see what type of post I can come up with.
Welcome to Searching for Solid Footing and thank you for visiting this new WordPress blog.
Searching for Solid Footing was started just after my 40th birthday. It is a blog born out of the sliding doors change of direction my life has taken since the birth of my daughter and her medical odyssey toward the diagnosis of a rare form of mitochondrial disease. It captures how my life took a serious change in direction as I focus on my daughter’s health and care. It recounts my pursuit of training for distance running and triathlon as a means to try and carve out a sense of self in a life highly charged with the care of another, and provides a metaphor for the ever elusive ‘solid footing’ myself and my training partners search for during long winter runs. This blog captures my daily attempts to stay on top of my life and to adjust to the week to week, day to day and moment to moment changes that I wake up to due to my young child’s unstable health.
Searching for Solid Footing is how I live my life. It is not a search for balance or making the most of each moment – two ideas I consider to be highly elusive and emotionally exhausting. It is reacting to daily struggles and challenges – having set plans that must be set aside for more pressing matters – and finding solid footing to move forward and carry on in the best way I can.
I plan to share insight from my life experiences on mitochondrial disease, medical advocacy, navigating the health care system, parenting a special needs child, family life, training-fitness-health, competing for those who can’t, and my thoughts and observations on raising my 2 children.
And maybe more
Thanks for reading.