I am emerging from my summer writing hiatus to share that today I wore a white shirt. This clearly indicates that my life as an extreme caregiver is in transition.
About 20 years ago I stopped wearing white. At first, similar to most parents with young kids, it was because I had young babies and toddlers who were likely to wipe snot and sticky fingers on my clothing. But by the school-aged years, the time when most parents are breaking their white clothes out of their closets again, mine were being relegated to the thrift store donation box. I figured I would never wear white, or any light colour for that matter, again.
Matthew has off-the-scale reflux. This means that his compromised muscle tone involves his GI tract. Food hits his stomach and is often regurgitated. In the early days it meant we struggled to not only get him to gain weight, but even to keep him hydrated and to keep important drugs like anti-seizure meds in his system. These days his reflux is well controlled with medication, a feeding tube, and some pretty invasive surgery, but I spent the better part of about 14 years being barfed on multiple times a day. At its worst, Matthew’s reflux meant that anything pumped into his stomach (remember, feeding tube) came flying back at me (literally, we’re talking some seriously projectile stuff) about an hour later. For medical reasons we documented and tracked his reflux patterns and noted that about 10-15 episodes of barfing a day was pretty standard. I have no doubt it was awful for Matthew, and for me it meant no light colours and frequent clothing changes. Drugs and feeding tube formula stains. White was reserved for rare occasions I would be, a) out of the house, and b) not providing any sort of care for Matthew. I own very few white or light coloured shirts.
Yesterday, Matthew moved to his future group home for a three week respite admission. Right now the plan is that he will move there full-time in early fall. Over the last few months my caregiving responsibilities have waned significantly as we begin to work through the logistically and emotionally complicated journey of transferring Matthew’s care to others.
So today I got out of bed, and knowing Matthew was elsewhere, I dressed in a white blouse. Something I almost never do. As I was pulling the blouse on it dawned on me that this white blouse was, in many ways, symbolic of the caregiving transition that is well underway in my life. As Matthew moves into his new life I will be doing the same. I will be pulling things from my pre-caregiving days out of my closet and hoping they still fit. These things might include blouses, but could also include exciting things like hobbies, friendships, careers, and me-time! Lately I have become increasingly aware of my re-opening of this old cupboard and trying things on for size. It is simultaneously exciting and terrifying. At times I feel almost paralyzed as I stand there, uncertain, about what my next steps might, or ought to, be. What should I take out of the closet and dust off, and what should simply remain where it has been for 20 years.
And then real life kicks in! Today, sporting my pretty white blouse, I do what I normally do when in town Saturday mornings. I head off to City Cafe for my weekly indulgence of hot coffee and a fresh-from-the oven, Montreal-style bagel. For our family Saturday bagels are a deeply held tradition. And while at the coffee station (at City one prepares their own coffee) I bumped into the coffee stand and hot coffee splotched onto my white blouse. Sure enough once home that blouse was in the laundry pile and was replaced by a more practical navy shirt.
Transitions, like life, are messy and there will likely be a lot of trying on and tossing away until I sort things out.