My Girl – Chapter 4

We waited to hear back from Sick Kids. Two weeks went by. Then three. Then four. The entire summer was passing us by as we waited for the MRI results. I played a lot of phone tag with Sick Kids Hospital. It turns out that when you’re referred to an MRI by an ER doctor, no one knows where to send your results.  In the meantime, my poor girl was hobbling around on crutches and munching Advil like candy – but it wasn’t touching the pain.

This is the summer that the parental guilt really kicked in. More like parental despair, really, since Olivia’s pain was this tangible thing hanging in the air every second of every day. We went from an active family of six to a family of 5 plus one in a wheelchair.  Everywhere we went, we had to second guess our choice: is it a long walk? Do they rent wheelchairs? Will it cause Olivia more pain?

It also didn’t help that she was 9 years old and extremely embarrassed to have people stare at her in public. She started wearing a tensor bandage so that people would assume she sprained her knee, hoping that they would walk away without staring. This was our new learning curve for the invisible illness part of life: people couldn’t see her left hip. People couldn’t see her pain. People couldn’t sympathize because they didn’t know why they were supposed to be sympathetic. Let’s just say that we learned a lot about people during this time.

Another thing that didn’t help was that when Olivia wanted to walk, she had to use her crutches. She had developed a severe limp and looked like one shoulder was higher than the other. Her body looked like it was twisting from the inside out (which actually was the case as she had developed functional scoliosis from limping). The problem with the crutches was that they were hurting her armpits, so she had to really choose when to walk and she had to decide how far she could go. Our entire family’s existence was reduced to our daughter’s pain tolerance.

Even though she was using her crutches to get around, we knew we needed to do more to increase Olivia’s mobility while we were waiting for her first Sick Kids appointment. Our lives were in a kind of limbo. We couldn’t wait for specialists or a firm diagnosis so we made our first real medical purchase that summer:  we bought our 9-year old girl a wheelchair. And it became a regular part of our lives.

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My Girl – Chapter3

The MRI appointment came so quickly that it made us feel that Olivia’s condition was more serious than we were ready to admit. Because who gets an MRI appointment less than a week after an ER visit?

The MRI appointment was an excellent introduction to the world of appointments at Sick Kids – because of the staff. They were wonderful with Olivia. I was allowed to go into the MRI room and hold her hand, which made both of us feel better. That is, until I read all of the signs as I waited for her to get her IV (for “contrast,” which involves injecting a dye into my girl’s arm which travels through her body and lights up when it encounters problem areas – nothing alarming about that small detail at all but please remind me to google “carcinogens” when I finish this chapter).

Here’s what we learned during Olivia’s very first MRI: the magnets are so strong that anything metal not nailed down will stick to the machine. Literally. On the way into the room there was a photograph on the wall of a full-sized, metal stretcher pinned, upright, to an MRI machine. The wall was littered with signs and posters warning staff to keep metal out of the room and the 3 pages of parent permission forms clearly outlined what not to bring into the MRI room (jewellery, metal-inked tattoos, coins, removable dental plates & braces, metal buttons on clothing, bullets, etc…).

When we entered the room, it was bright but cold. I was thankful for my sweater yet worried about the zipper –  I was afraid to ask yet afraid to not ask, you know? It turns out that zippers are fine, by the way. The technician had Olivia climb onto the narrow MRI table and showed us how the machine would suck her in (my words, not the technician’s, but that’s exactly what it did). I was asked to sit in a chair by Olivia’s head (her mid- to lower body would be in the machine) and hold her hand. We were both given headphones for ear protection. The technician then pushed a button and half of my daughter disappeared into the great white abyss.

Then the machine started. It was a cacophony of noise and sounds. And it was loud – even with the headphones. It would pulse like a heartbeat. Then it would beep. Then it would clang like metal pots and pans being banged together over and over.  I felt like I was at a combination hard rock concert/diesel train convention/tractor pull . After a while, the machine noises would change and sometimes I swore the machine was actually talking – or should I say shouting. “Get him! Get him! Get him! Get him!” It even started to sound like music at one point. I felt so bad for my poor girl with her lower half stuck inside this extra-loud monster. But a weird thing kept happening and it was distracting me a bit from the worried Mommy drama – whenever I crossed my legs, my right shoe would “stick” to the machine. Horrified, I realized that my sandals had a metal buckle on each toe and the magnetic pull of the machine would sometimes surge and pull my foot toward it.

So during Olivia’s first MRI experience, I was fighting the shoe buckle battle and trying not to make it obvious to the technician watching through the glass window. End result: MRI machine 1 – Parental Unit 0.

But at least we were on the road to discovery about what was happening with my girl’s left hip.

My Girl – Chapter 2

Our night at Sick Kids was our very first introduction to well, the world of sick children. From the moment we pulled up to the emergency room until the next morning when we left, it felt like a surreal experience. First was the semi-argument between Faraz and me about where to park.

“You can’t leave the van in the ER bay,” I said.

“We’ll just be a minute and I’ll get you two inside and I’ll come and move it,” was his reply.

“How will you know where to find us?” I was starting to panic. I was feeling out of my element and worried about Olivia and the sleeping boys at home (what if I don’t have the right words to describe what’s wrong? What if the doctor says it’s nothing and sends us home? What if they say it’s something and they keep us? What will the boys think when they wake up and we’re not there?).

He shot me a withering look.”I’ll find you. Now go!” 

I grabbed a wheelchair from the entryway, hoping it was okay to borrow it. I mean, I was bringing a child into the hospital, not leaving with the wheelchair after all. It felt strange and foreign to push, like a very short, heavy baby stroller. Wheeling up to the reception desk, I awkwardly manoeuvred Olivia in the wheelchair to wait behind this red line of tape on the floor, beside a hand sanitizing station. I marvelled at how civilized it all seemed. Where were the wailing kids with bloody noses, broken bones and high fevers? This quiet, organized place did not fit my mental schema of an emergency room for children.

The receptionist behind the desk was a young guy in his 20’s. He was unflappable. I suppose that’s why they hired him for the night shift and I wondered what he had seen thus far in his 20-something years on earth. He took Olivia’s information and sent us to a waiting area which was empty except for a set of parents with a small girl with gigantic eyes with an equally gigantic cast on her leg and a weary-looking mom pushing a sleeping baby back and forth in a stroller. Still no wailing or blood. I began to feel like maybe we were in the right place after all.

Olivia was seen within an hour of arriving at Sick Kids. They were actually having a busy night (I guess the quiet emergency room waiting area belied the truth) so the only exam room left was the supply room. Someone had thoughtfully placed a stretcher in the room along with two chairs – a vinyl recliner and a regular, upright waiting room chair. Faraz and I would take turns throughout the night, both of us trying to (unsuccessfully) doze in these equally uncomfortable chairs. Olivia fared no better on the stretcher, being in pain and feeling out of sorts herself.

When the doctor came in, he introduced himself to Olivia first and then to Faraz and me. We liked him right away. He listened to our story about why we were there and told us that it sounded like Olivia might have a case of SCFE (Slipped Capital Femoral Epiphysis). This is where the ball and socket of the hip joint slips out of place and causes pain, limping and possibly a broken growth plate. The only cure for SCFE is surgery. The doctor immediately ordered x-rays and a blood test and said he would be back as soon as he had more news.

So yeah. That was that. It was scary for Olivia. All she heard was “blood test” and “surgery.” Silent tears rolled down her face and she lay in the bed trying to get comfortable. Faraz and I pulled our chairs close and each took turns holding Olivia’s hand and talking to her, trying to distract her from her fears.

We couldn’t let her know how scary it was for us too. This is the part of the “club” (the club called “Parents of a Sick Child” – this is one club you don’t want to join). Never let your child see your fear. She needs you to be strong. She needs you to take her worries away. So you put on a brave face. You cry in the shower/garage/parking lot/elevator. And then you pick yourself up and go tend to your child. Because that’s what you do; it’s what you have to do.

After one blood test, a set of x-rays and lots of tears (Olivia’s), the doctor came to us with some news. At this point, it was 6 am. Faraz and I felt like bleary-eyed, grey, worn-out shells of our former selves. I don’t know about him but I felt slightly panicked that I wouldn’t remember – or understand – the doctor’s words. But I needn’t have worried because his recommendations were simply to purchase crutches (yes, purchase them – cash or credit card payment accepted conveniently right there in the ER!)  to relieve the pain of walking and to wait for a call for an MRI appointment. The blood test results indicated a high level of inflammation in Olivia’s blood. The x-rays showed no signs of SCFE but did show “some changes” to her left hip.

So with that vague diagnosis, we were dismissed from Sick Kids in the bright sunshine of a July morning: our 9 year-old girl slowly manoeuvring herself on shiny, new crutches, carrying her favourite stuffed lamb (oh-so-creatively named “Lambie,”) and her parents carrying the weight of this new medical world on our tired, sagging shoulders.

And so it began.

My Girl – Chapter 1

It all started in May of 2014. My daughter, Olivia, was a guest at her friend Julie’s (name changed to protect the innocent) 10th birthday party. Olivia was still 9 at the time, being one of the only girls in her group of friends to have a birthday in fall, later in the year. Not that it matters when her birthday is…I just feel the need to mention it so it’s on record that Olivia was only 9 years old when this all started. Poor Julie jokingly got the blame for causing all of this since it happened at her birthday party, but in all fairness, perhaps it was a blessing that it happened at all since it alerted us to a problem that had been there all along.

Simply put, Olivia fell down while ice skating. Her dad (Faraz) and I weren’t even there. It was was something she laughingly mentioned to us when we picked her up after the party. Olivia had been skating with her friends and she tripped and landed on her hands and knees. No one thought anything of it and she got up, a bit embarrassed, and continued to skate. Later that night, Olivia began to complain that her leg hurt and she indicated the thigh area of her left leg. Her dad and I just chalked it up to her fall while skating and we assured her it would be better after a night of rest. But the next day, the pain was still there. And the day after that. Rinse and repeat. After a week went by,  we were getting concerned so we took her to our family doctor. He noted that Olivia had developed quite a severe limp because she wasn’t putting any weight on her sore leg. An x-ray and ultrasound of her left thigh was uneventful. We were stumped but starting to wonder if our daughter (who loved to be on stage) was being a bit dramatic.

Fast forward to a few days later when we were putting Olivia to bed (why is it always at night that things happen? Barfing, fevers, pain…can’t these god-awful ailments happen during the day – or at the very least – after at least one cup of coffee?). She complained of leg pain. But she fell asleep so Faraz and I hoped that it wasn’t really a big deal. An hour later, she woke up and called us to her room to tell us her leg hurt. We encouraged her to go back to sleep. An hour later, the same thing all over again. It was 11 pm and Faraz and I locked eyes over our daughter’s head. We both knew. This was serious. The next two words out of his mouth changed our lives forever. “Sick Kids?” Faraz asked me. All I could do was nod my head. The lump in my throat was too big to even try to speak.

So at 11:30 pm, we said thank you and good-bye to our next-door neighbour, who graciously came to sit in our living room with her two young boys, to babysit our 3 young boys who were fast asleep in their beds upstairs, oblivious to the drama that was unfolding as they slept. We were off to Sick Kids. We needed answers.  And we were terrified.

 

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Apology to my former students

Dear Former Students,    teacher 1.jpg

If karma is a thing, then it definitely has come back to right some wrongs. And I am humbled. But most of all, I am sorry.

I’m sorry for:

  • group punishment: if only 2 or 3 of you were making farting noises in class/jumping over your chairs when the lunch supervisor wasn’t looking/running in the hallway when the principal told you not to a mere 5 seconds ago…then I should have played detective and figured out who it was and given the 2 or 3 of you the consequence, not the whole class. In my defence, sometimes you little buggers stick together and don’t rat each other out. That’s when it gets challenging. But group consequences make it bad for everyone and I am sorry.
  • assigned homework: you did not need to complete 2 pages of Math questions every night to prove to me that you understood the concept taught that day. Five questions done in class and corrected by me would have been sufficient. For hours of unnecessary homework that may not even have been marked the next day, I am sorry.
  • group projects: these are akin to stepping on a piece of Lego in the dark.  For forced groups, late nights and scheduling issues related to group projects, I am sorry.
  • educational field trips: boring, boring, yawn. A typical school day requires that students sit in chairs and get talked at all day. That’s hard enough on a kid. Why not make the field trip active, engaging and exciting? Sports camps are great ideas for year-end trips that fit into the Phys Ed curriculum perfectly. For boring field trips, I am sorry.
  • notes copied from the overhead projector: it’s now a smart board or a white board but it’s the same dreary, pain-inducing task. Yes, research shows that the act of writing things down does solidify concepts and it is a great study tool. However, I’ll be completely honest when I tell you it was “busy work” – it kept you busy and it kept you quiet. It also saved on photocopies. A more valuable lesson, though, would be to provide each student with the note and a highlighter. The whole class reads through it and highlights the important points. Then a discussion of the topic and an oral question and answer period would enhance the material. For sore fingers and necks, I am sorry.
  • written assignments: these can be tedious for some students. Not all knowledge has to be shown in writing. Students can give oral reports, make slide shows, design a poster, create a 3D model…as long as the end product is a demonstration of the student’s knowledge of the topic, it shouldn’t matter.  If it’s a written assignment like a creative writing story for Language, then that’s different. But technology can play a huge role in that now, too, with word predictors, text readers and even text-to-speech apps. For some tedious written assignments, I am sorry. And for boring, stuffy book reports, I am extremely sorry.

So…why the apology? Well, it has all caught up to me now as I am the parent of 4 children in school. I’ve suffered through homework (and tears) for hours on end; I’ve juggled my schedule to drop my child off at another student’s house to work on a group project that is due tomorrow; I’ve had screaming matches with my 7 year-old because he lost the instruction sheet twice and he can’t remember if he chose to do his project on the meerkat or the tarantula spider wasp (and yes, Mom, it is the end of the world if more than one kid choses the same animal!). So, yeah, I get it. And I’m sorry.

'I channeled John Dewey.  He says if you want to be a good teacher, don't teach reading and writing.  Teach students.'

Picking Up the Pieces: Part II

So I’m sitting on a hard, vinyl chair just like all of the other hard, vinyl chairs I’ve sat on over the past few months in yet another clinical setting and the only thought going through my head is, “How often do they sanitize these chairs?”

I think it’s largely due to the fact that the brain can only hold so much important information and it needs respite from worry and statistics and medical diagnoses. Here we are again, in another specialist’s office, waiting in the small waiting room after just having waited in the larger waiting room, for someone else to ask the exact same questions and perform the exact same tests as the previous one. Don’t you doctors take notes anymore and, like, transcribe them onto the computer or something? Or are you performing some sort of double-blind experiment to see if we answer the question wrong so you can all confer in a tiny room off to the side after we leave and change your diagnosis? But we smile and nod and go through each poke, prod and question as if it’s the first time we’ve been asked. Because we want answers. Because we want you to fix it. So we are playing nice.

It would be so much easier if these appointments were for me. Yes, I’d worry and all of that stuff, but this whole situation is compounded by the fact that my 9 year-old daughter is the subject of all of this scrutiny. She has missed countless school days, a few birthday parties and friend get-togethers, and just normal kid stuff while sitting beside me on hard, vinyl, germy  chairs. She also gets to sit on various examining tables replete with scrunchy paper and she’s getting used to hospital beds with blue blankets (why always blue?) and flat pillows. But the best part is the number of blood tests this kid has had. It breaks my heart to walk into that paediatric blood lab with its brightly-coloured walls and curtains and the chart-sized paper under the receptionist’s desk entitled, “Helpful Hints for Blood Tests” where kiddies print or draw their strategies to make it not hurt. 

I’d take a million blood tests for you, kid.

It’s funny how this has become our new normal.

blood lab 1

Picking Up the Pieces: Part 1

Anyone who’s ever had a newborn know what “sacrifice” means. You sacrifice basic things like sleep, showering (even eating) so that your baby goes to sleep/stays asleep/lets you sleep. This little tiny being, who was much easier to care for on the inside, has now become the Mafia don of sleep, sanity and well, your life.

But you know that this, too, shall pass. It’s a short stage of a baby’s life and you will get through this. With coffee. And friends who have been there. (Just not the granola, baby-wearing friends who co-sleep, don’t own a TV, eat only organic veggies and eschew disposable “landfill-clogging” diapers who looooooove their babies so much that they never utter a peep of complaint). Yeah, not them. Don’t discuss your complaints with them because they won’t understand. Besides, they’re busy planning their gap year (nope, not Baby Gap year where they exclusively shop and coo over their mini model plastered all over Instagram). This is the year they’ve saved for since getting married where they take a year off work and travel. With baby. In a converted school bus. Complete with compostable toilet. Featured on a show called “Tiny Travellers” or something similarly kitschy. No, don’t expect those friends to commiserate with the daily struggles and sacrifices. Complain to other friends – you know, ones with real lives and stuff.

So you get through that baby stage and maybe stupidly fool yourself it wasn’t so bad after all. Your body recovers from the pregnancy and your brain meanly tricks you into dreaming about another mini Mafia don. You may even have missed the memo about toddlers in the throes of toilet training and the terrible twos and the fact that you can never go out in public again without sweating that you’ll lose a kid/shoe/favourite stuffed animal/wallet and be criticized by other parents as you run through a store, sweating and screaming that you’ve lost a kid/shoe/favourite stuffed animal/wallet/sanity…you know what I mean. So you have another kid. Rinse and repeat. Alllllll over again. Until one of you finally snaps and insists on the vasectomy/tubal ligation (nevermind that one of you could die young and meet another partner and possibly want children again. Nope. Not allowed). There. All better. Right?

You’ve got 2 or 3 kids by now and you think you’ve got this parenting thing down. Your kids survived the time they ate dirt/spiders/playdoh off the floor and life is good. Until one day your child starts complaining of a sore leg or arm or fever or chills or whatever awful condition you can imagine and your life as a parent changes forever. Because what you once thought was sacrifice doesn’t even compare. What you once thought was hard doesn’t even matter. Because you are now the parent of a child with a critical illness/disease/condition that you can’t fix. And it’s f*cked up.