Slow down, you move too fast

On behalf of Gilly and myself, I’d like to thank our very special nephew, Noam for stepping in last Sunday. It was a hectic day; he relieved me of my blog duties, which allowed me ample time for last minute dinner preparations (which included his favourite Auntie Cindy dish; mashed potatoes. He sure is easy to please). He’s quite something for a 12 year old, wouldn’t you say? His vocabulary is amazing. I believe it has much to do with his passion for reading, the sophisticated novels he chooses to read, his sponge-like mind and his participation in adult conversations.

(Please see photo of Noam and Uncle Gilly above. Photograph by Tamara, one of Noam’s greatest fans).

Gilly continued to hold his own in the appetite department all weekend long. He started chemo again last night. Despite increasingly greater fatigue (which would be expected when pumped with all the heavy drugs he’s on, and will be until Saturday night), his appetite continues to hold out.

I woke him this morning at 6:30 to invite him to the breakfast table as an option. I was concerned that, due to the medication, he may not be up to making his own toast as he has been doing. He accepted, but never seemed to make it out of bed after 4 calls. I finally offered to bring his food to the bedroom, and he agreed. Yaron and Gilly munched on toast together in our bed. Why not? The goal is to maintain his recent weight gain, so whatever works towards that end is worth a try.

I came out of my classroom at noon to find a message from Jennifer’s supervisor at the CSSS. She called to inform me that Jennifer would be unable to make it today; there would be someone else coming in her stead. I imagined Gilly fast asleep, not hearing the bell, so I called a few times until he finally picked up. I told him the story and suggested he get up out of bed and greet this new person.

She called me a short time later (unfortunately, I did not catch her name, but I will investigate tomorrow by calling her supervisor. For now, I’ll call her Anna). She was concerned that he was refusing to eat the [I must admit delicious] shepherd’s pie I left for him and asked what I’d like her to give him instead. She was willing to go through my fridge and pantry and find something he’d eat. I was impressed with her desire to ensure that he eats, and her overall initiative (something that Jennifer, to date, has not really shown). She also wanted to ensure that the pills I had left in the ‘shot glass’ on the table were the right ones to administer (which is a riot, since neither one of us have ever used these adorable family heirlooms for anything but pills - they look like miniature A&W mugs to me).

This was the first day I had not written “with lunch” next to the pills, because I had left all sorts of other notes for Jennifer with the pills sitting on the papers, assuming she’d make the connection, since it’s the same ritual every time she comes. Just goes to show that I must continue to leave detailed written instructions in case a switch of this nature takes place again.

This story reminds me of when my children were babies. I used to ask my mother to baby sit, and left her pages of instructions to follow, as if she hadn’t raised 3 babies of her own. In this case, the stakes are much higher; we’re depending on strangers to watch over my precious, fragile package. A care giver would not look after Gilly’s needs with as much love as a wife, child, parent or grandparent would; written instructions remain a basic necessity.

I arrived home a couple of hours later to find Gilly wide awake. He accepted the lunch I had prepared early in the morning and pretty much polished it off, even though he had had cheese and crackers as a snack with Anna. He sang her praises, declaring that she seems to be “good and efficient and very nice.” I will see if there’s a chance that we can make a switch when next we see Brad (a week from tomorrow).

Now that we’re settled into more of a routine (work for me, school for Yaron, physio and sundry appointments for Gilly), I find myself less anxious, but I continue to feel overwhelmed by the level of responsibility I have for every minor detail of someone else’s life. In the past I never packed a suitcase for Gilly; I refused to pick up his laundry from the floor; he made coffee for us both every morning, and tea every afternoon; I never chose his clothing or made any of his decisions. He was an equal partner in every way in terms of holding down the fort we call home and family. Now, I do almost everything for him. I lay out his bread for toast, filter his coffee, cut and place his fruit attractively on a platter, organize his pills for the morning on his placemat, place his apple sauce mixed with protein powder just off to the side waiting for his gradual consumption, prepare and label his lunch (a full course meal) so as to be easily identifiable in the fridge, leave notes for the caregiver (whether it be Yaron, Manuela, Jennifer, and now Anna) and gather my own materials and make for the door, all by 7:30 a.m. (if I’m lucky enough to make this deadline). I go to work and throughout the day manage to sneak in medical calls and emails to make or change appointments, gather information and so on. Frankly, it’s overwhelming, as I mentioned. But it has to be done, and the longer I do it, the easier it gets.

I work out systems and tap on all my friends and family as needed to assist me, and surprisingly I am able to muddle through what needs to be done. My best coping mechanism is my smile, fueled by others, especially Gilly. I try to seek out the humour; the pleasant aspects in life. I respond to love and friendship; what matters most is startlingly simple; each other.

Regardless of a positive attitude, I still haven’t enough time in my day to attend to all matters; I have to prioritize, and modify my expectations for what I can accomplish within a given time frame. I am always busy, and never get it all done. I used to take pride in completing tasks according to a self-imposed schedule, always demanding of myself to make an earlier deadline than required, just in case life gets in the way. Well, life is now permanently in my way, so I have no choice but to meet most deadlines just under the wire, and some, not at all. It puts life into perspective. What was my hurry? Where was I going? I used to be the type who never missed a meeting and always arrived on time or early. I admit now that I was silently intolerant of latecomers and those who asked for extensions, yet I envied those who could seemingly manage to be late yet not care.

I was put to the test yesterday. I left my office to find 4 teenage boys waiting in the car for me. Yaron’s friends appreciate their Tuesday afternoon lift home. I was exhausted, and nestled contentedly into the passenger’s seat to relax for the ride home. I knew I had yet to pick up the Temodal, and was not ready yet with supper. I was in the midst of entertaining the idea of cashing in on a generous gift we recently received from the gang at the LDAQ; gourmet take out when I heard a strange noise. Yaron hopped out to investigate, and quickly diagnosed the problem; a flat tire! My insides began to churn. How would I get to the pharmacy? How would I get to the gourmet take out shop? Where will I find the strength to meet this challenge? I myself had never changed a tire, nor had any of the 4 boys in the car.

After several emergency calls to Gilly we found the tools. It was quite a funny scene, actually. One fellow said, “How many Vanier students does it take to change a tire? One, and three to watch.” Gilly was pleased he could help (he’s no stranger to consulting over the phone; he walked Yaron through furnace repair this past winter over long distance from Africa, with Yaron’s computer acting as a webcam to send Gilly a viewing of the source of the problem). The disaster turned into a learning experience for all 5 of us. We made some mistakes, luckily not fatal errors (for example, we mistakenly jacked up the car before loosening the bolts, so the car swayed and dropped off the jack – oops!).

I do not believe I possess the physical strength required to get the bolts off a tire. I guess I’ll have to reregister with CAA, because there’s no guarantee I’ll have my son with me the next time this happens.

Yaron turned to me on the way home and asked, “Should we order some dinner?” That was the best idea I’d heard all day.

Life tried to get in our way; it slowed us down, but the sky did not fall; we shortened our path, adjusted our expectations and found the humour.

So Gilly is doing just fine, and we hope he continues to fare well over the next 4 days. Please remember that he’s safest when people with colds and other nasty germs keep their distance.