The last few days have been overwhelming and very tiring. I am exhausted dealing with the various stressors in my world. I wonder how I can get it together to deal with the next day of “oh boy, what do I have to face today”. I have been dealing with having acutely and chronically sick children for over 12 years. I have spent over 400 days with both the girls at BCCH. During this whole time I try to manage (sometimes not as successfully as I would like) my own health, being a single parent, keeping the important relationships in my life, working full time (and then some), and helping care for others in my life. I sit here at the computer wondering when I will get a break? You could call it a colossal pity party. Which I believe are important in life…once in a while a person needs to let go and feel the frustration, sadness, and worry that surrounds them at times. Then I try taking some deep breaths and reframe.
I do get breaks — they are moments in time that allow me to relax, sometimes laugh, and remember what is truly important. These are the moment that lift my spirits. Albeit I have to dig deep sometimes but they are there….
Hair cut: Yesterday I ducked out after Ryleigh’s opthamalogist appointment (She needs new glasses!!) but the rest of her eye looks good, no long term damage caused by the steroids she has used the last 3 years. I found this lovely salon, got my hair cut. I am now proud to say I have all my own colour…first time in 30 years! During the cut, I was so relaxed I dozed off…I was told I did not snore! That time allowed me to reboot and come home to my daily chores (and continued deep cleaning to prepare for Ryleigh’s suppressed immune system)
Waiting Room Time Out: Today it was a long day going with Ryleigh to four different tests. They are creating baselines to make sure they have information to compare with after her major chemotherapy regime and subsequent transplant. At the final test which was a pulmonary function test I had to wait for her as she was whisked away to a room to do the test. In the waiting room, I was reading my book: only time I seem to get a chance to read fiction is when the girls are in the hospital and I am reading the book Wicked and loving it.
White Spot: Watching Ryleigh enjoy a legendary White Spot burger oozing with ketchup. Knowing that in a week or so she will not be able to eat restaurant food.
School work: Coming home to a very excited Chloe. She is getting into school again and in Science is learning about reproduction. She is learning how cells reproduce and how they work. She was going at a speedy pace telling me all about it….so much so she has decided to get deeper into the understanding of stem cells and asked to do a special project on Ryleigh’s stem cell transplant. A spark has been lit and even though she develops pain in her fingers, hands, and arms….she was on fire…wanting to work almost too long at one time…but I am a proud mama/educator.
Hair Falling out: Chloe informed me that it was starting to happen. Ryleigh put her hands through her hair and she had a whole bunch of hair on her hand. So at dinner (yes chicken and mashed potatoes AGAIN as this is one meal Ryleigh can manage to eat) I decide to broach the subject of hair loss. Bare in mind that I have read on the internet and in books that this can be very traumatic for adolescent girls – losing their hair from the chemo. So I tread lightly….”So Ryleigh, Chloe tells me that your hair is starting to fall out”. Ryleigh replies, “It is…it is really neat. When I pull my hand through my hair it come out in a big bunch” Well there you go.. Later on I asked her what she really felt about it…and she is fine…not like she chose this. She actually wants to go to get her hair cut and shaved off tomorrow cause the hair all over the place is really annoying her.
My spirits lift and I wonder what I will find tomorrow to help me cope with my reality….