A Whole New Life…



It’s difficult to articulate how incredible this gift has been for our family, but more specifically, to Lola. This gift I’m talking to is a seizure-free life. After making the incredibly difficult decision to allow a surgeon to cut into our daughter’s brain – a brain that is already besieged with scar tissue and effects of various injuries inflicted by her tangle with viral encephalitis and multiple daily seizures – we have not looked back. It’s like once I signed the consent papers, a weight was lifted. This is not to say that we weren’t completely, nauseatingly stressed out about the upcoming surgery – trust me…we were. But somewhere, something deep inside me said, “It’s going to be okay. You can do this. She can do this.”

The surgery and hospital stay were somewhat harrowing, but made less so by many people, including my brother, who brought up lunch everyday, and came to sit with us during some less than pleasant times, and my sister who texted, facetimed, and called 24-7 wanting updates on every little thing Lola was experiencing. The nurses and staff who brought us homemade chocolate chip cookies (Cathy), tucked us into bed at 4 in the morning (Lisa), brought a feeling of “let’s cut the bullshit and figure out what’s going on” to a tough recovery (Jane), laughs, caring, inappropriate giggles, while doing an incredible job of balancing an extraordinarily stressful workload (Shannon, Mel, Jodie), for kicking out the worst roommates known to man (Mellers), for watching us closely on many a night shift so that we could get some rest (Cathy, Steph, Jodie & lots of other awesome people). An army of incredibly skilled women (and sometimes men 😉 who work under extremely difficult conditions – a decline that was quite evident since our first stay a few years ago. I don’t know how they effectively manage their patients without going insane under the current conditions. I’m not kidding.  I could go on and on. Seriously, there are so many amazing people at the Alberta Children’s Hospital. There are supply staff who rush towels to your room because they heard you couldn’t find any and were giving your child a bath (Lanie). Towels are brought to you, not out of a sense of obligation, but because they genuinely care about your family – often delivered with a funny dance, or a song, or a hug – and always “God Bless Lola.” There were times that I would sit with tears in my eyes because I couldn’t believe how many people would go out of their way to just come by to say ‘hi’ because they remembered us from four years ago and have always remembered my brother bringing up Christmas dinner in 2008 (Catherine, Jane, Zenaida, Doods, Steph X 2). The Child Life Team, who recognize that Liam’s a bit of a lost toy in all this mess – and take him under their wing to show him a good time. He was always included, and always felt that he belonged on Unit 3. The nurses couldn’t wait to see him, and be entertained by his antics. He may have even picked up a longlost relationship with Shannon while he was there. I’m not a hugger, by any means, but these people are – and you get used to being hugged even though you haven’t showered in three days and have been sleeping in your clothes. Rebecca, our Speech/Language Pathologist from Lola’s first hospitalization, who knows us well, and trusts my judgment implicitly – rallies to advocate for Lola like she’s her only patient. Karen, for always looking out for us, for being a good friend, and for bringing me breakfast and lunch. I can’t tell you how great that tea tasted after I sat awake all night in ICU. For all the bellyaching I do about things that have not gone our way in the medical system, there are people who radiate pure love for these children – and I am lucky that we’ve crossed paths with them on our stay. (I’m sorry to those I’ve forgotten to mention by name! Trust me, I will remember as soon as I hit “publish”…)

edited to add: Okay, I’ve just forgotten to mention one of the nurses whose name escapes me… (She looks like a model, has three or four kids, and her husband used to be the cop at my school…) One night, during one of Lola’s fever rampages, she needed a suppository to bring down her fever. She also needed her bed changed, just to add some fun to the night. I was holding Lola in the chair, with a few lines running which made things challenging, while this nurse changed the bedding. At one point, I slipped my foot into my slipper and let out a gasp – what the heck was on my foot? Somehow the lube from the suppository ended up in my slipper, and then all over my foot. Disgusting! So she had to wipe off my feet and slippers while I held a squiriming Lola…at 3am…..poor woman!

 

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  1. You are a strong, amazing woman Gillian! I can’t imagine having to go through everything you have with that little girl of yours! Kudos to you kiddo :) Keep smiling <3

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