Sleep

There's this totally super cute saying I saw on Pinterest.  It's like word art, room decor for a little girls nursery.  It goes, "Let her sleep, for when she wakes she will move mountains."

It's actually derived from a quote by Napoleon.  Except he was talking about China.  I'm pretty sure most people re-pinning that cute scripture, ordering wall decals to lay out over a crib don't know that.  And it doesn't really matter, because it's cute, and it gives you hope that one day big things will happen.  Let her sleep.  Enjoy that quiet.  Allow bigger things to develop.  Because they will.

When Evie was born, I would watch her sleep for hours.  On my chest, on my lap, in her crib, in my bed...I could watch her sleep all day.  I would watch her go through the process of falling asleep: become heavier in my arms, her breath slowing down, little wimpers every now and then.  Have you forgotten about the infant startle reflex?  It's quite possibly the cutest thing to witness.  They grow out of it of course, so you kind of have to cherish it and pay attention while it's happening....I guess thats most things with kids though right?  Sleep holds an innocence, a sweetness...and all just feels safe and right. 

Sleep though, has taken on a Jekyl and Hyde persona (personas?) for me.  It's kind of the the good, the bad and the ugly all at once.  Sleep has become something that is ya know, only ok in doses...too much of a good thing never works out, ya know?  Sleep has become a sign of something developing, of something bigger, just not something good. There is an obvious difference between the good sleep and the bad sleep, obviously. This is something that happens daily, and it's not like I'm worried everyday (ok, well maybe a part of me is worried everyday, but that's just about anything, not this specifically).  So the normal, every day night time sleep...is good.  The bad though, the bad is when she just doesn't feel well.  Her cheeks are pale, her eyes are dull, her energy level is just enough to turn over on the couch and find a new comfortable position...before falling back asleep for hours. 

When Evie was 2 1/2 years old she drifted asleep.  It happened over a period of a few weeks.  I knew something was wrong, but it was such a gradual decline it was hard to diagnose.  It wasn't until I showed up in the ER for the 3rd time in 2 weeks, with a little girl completely out in her stroller, in her 18th hour of consecutive sleep that I got their attention.  Finally there was no denying, something was wrong.  The next time the sleep started I was ready for it.  Despite not being a "normal" symptom, I recognized it.  This was her pattern, and it was starting.  She was sleeping, had no energy...and I wasn't taking no for an answer, I knew better.

And so she went again from the scary, endless sleep, to the normal, relaxing, beautifully calm sleep again.  And as soon as the transition was made it was obvious.  It was just different, and it was better.  On the inside I could slow down, be comforted in the fact that my little girl was in fact just sleeping, and not drifting far away from me. She was just sleeping again.  And I could watch her, and dream of the bigger things to come.  The mountains she would move.  

Strange thing though?  I kind of get the feeling she's already moving them.

for the Bebo Blog

The following post is a guest blog I wrote for bebo mia - a Toronto based Fertility/Pregnancy/Parenting company. 

I remember the day I went for my 20 week ultrasound like it was yesterday.  Like many expectant mothers these days, I really wanted to find out if we were going to have a boy or a girl.  It seemed wildly important to have this piece of information...as soon as possible.  I thought that once I knew, I would be better prepared for the baby...I could set up the nursery according to gender, I could eliminate half the names floating through my head, and I could more importantly tell our friends and family so they could also prepare....and buy the right coloured cute things babies need.  You can probably already tell, I’m a bit of a Type A.  I like to be organized, I love making lists  (they usually have handmade check boxes beside them), and I love schedules….these things just make sense to me.  So despite really embracing the miracle that is pregnancy, and fully trusting the process of baby growing….I kind of figured – well, this is something we can easily find out….so why not?  In fact, I really needed this fact to ensure I had it all figured out.  I thought that knowing the gender, I would be prepared for parenting my baby.  And soon enough, a sea of pink flew throughout my house.  

Throughout my pregnancy I felt great ...I really did.  It helped that I had a very uncomplicated pregnancy, classified by one of my midwives as “boringly normal – which we like”.  I seemed to float through week after week with ease, gaining modestly, eating and sleeping well and feeling great.  At 40 weeks and five days, I went into labour, and within a few hours my daughter had arrived.  Evelyn was born at home, surrounded by family and midwives on a beautiful spring day in April 2010.  The labour and delivery had gone smoothly, and she was a perfectly respectable 7lbs1oz and 21.5 inches long.  

Over the next six months I watched my little baby grow...shamelessly in awe of everything about her.  I couldn’t get over how perfect she was, her tiny little feet, her big blue eyes and her reddish blond hair.  I quickly fell into the groove of mothering a newborn, had diapers and nursing down pat. My Ergo was my best friend in the daytime for housework, and I could easily fold my stroller one handed.  I watched my daughter meet milestones, and recorded them diligently in her baby book.  I wasn’t perfect, but I did feel like I had it figured out.  It all felt so natural, and I remember thinking on more than one occasion how lucky I was to have such a perfect family, and such a great life.  That’s how things felt – perfect. 
When they first told me, “We found something” my initial thought was – great.  I mean, we had been in the ER at SickKids for over 12 hours…..they had been running tests and not telling us anything all day….wasnt the whole point to find something?  I guess I didn’t really understand the magnitude, but honestly, how could I?  This was not in the plan, I was not prepared for this, and this was not supposed to happen.  As much as we fear the worst, in the moment that the worst is happening, I think we are all so blindly naïve.  Perhaps it’s a subconscious defense mechanism we all have, some kind of self preservation.  I never imagined that “something” meant tumour, or cancer.  Yet there it was.  Evelyn was diagnosed with a hypothalamic optic glioma – a Brain Tumour.  It was October 29, 2010 and Evelyn was 6 ½ months old. 

That diagnosis – brain tumour – changed everything.  In the course of a week, Evie had her first hospital visit, her first surgery, and her first dose of chemotherapy.  We walked the halls of the hospital a little like zombies as a parade of Oncologists, Surgeons, Therapists, Social Workers, Nurses and other specialists took turns “informing” us on our daughter.  We were learning a lot, a lot about someone we thought we knew everything about.  Though we didn’t quite realize it, we were also being thrust into a whole new world.    

It’s funny how something can be so devastating, and life changing, and horrific....and then over time become almost normal.  Evelyn turned 3 two weeks ago.  She is still receiving chemotherapy, and in the past two and a half years since her diagnosis, she has also had 3 surgeries, 11 MRI’s, 4 CT’s and dozens of appointments with the five departments that follow her at SickKids.  That world we found ourselves in has also grown, not only to include another medical team at Holland Bloorview Kids Rehabilitation Centre, but a support system of families we have met along the way, as well as many wonderful organizations who are dedicated to helping us, and our children. 

It took me a while, but once I was ready to become involved in the community I had found myself in I was shocked by a lot of what I learned.  Brain tumours are more common than you think, and they were popping up all around me…it’s like once I became aware….I noticed, my eyes were opened.  So that’s what I want to do – I want to open your eyes.  This kind of thing, cancer, brain tumours – they happen…all the time.  Brain tumours are the leading cause of cancer-related death in young people (under 20).  On top of that, there are over 120 different kinds of brain tumours.  They key to making treatment effective is research, and lucky for us, The Hospital for Sick Children is home to the only Brain Tumour Research Centre in all of Canada.  

Meagan’s Walk is an annual event that supports Pediatric Brain Tumour Research and SickKids. It was created by a Mother, who lost her five year old daughter to a fatal brain tumour.  Their goal is simple: to create public awareness about Pediatric Brain Tumours, and to raise money to assist in further research. How do they do it?  With hugs.  Every year participants gather together for a 5km walk – the destination?  SickKids. Together, we stand, hand in hand, forming a giant hug…a circle of hope around the hospital. It’s a pretty powerful message to everyone inside, and it’s a pretty awesome thing to be a part of.  Meagan’s Walk is doing it too….to date they’ve raised 2.7 million dollars for Pediatric Brain Tumour Research, and the walk is getting bigger every year.  The great thing about Meagan’s Walk is that not only are they doing such great work for such a great cause, but they are truly there for the families they are working to support.  They are in touch, they are friendly, they are welcoming, and they are ready and willing to help us. They are an amazing group of volunteers.  They are worth knowing about.  They are worth talking about.  They, and the kids they are helping, are worth supporting. 

www.meaganswalk.com

http://my.sickkidsdonations.com/TeamPage.aspx?EventID=114594&LangPref=en-CA&TeamID=358418