Golden Treasures Come In Blue

I've spent the last 10 months being an executor.  Not an easy task to deal with someone's assets and their belongings.  You find things they held onto so dearly from the past and all you can do is question the purpose of that item.  Eventually, you figure things out, uncover things, finalize things and make the arrangements for their final resting place, following their Last Will and Testament to the best of your ability.  Now the process starts where I finally get to mourn my Mother.  My relationship with my Mother was not like the relationships I saw my friends have with their Mothers.  It was bumpy, it was difficult.  It's hard to always be the parent when you are supposed to be the child.  However, that was our relationship, the roles reversed for as long as I can remember.  I swore that my children would always have a Mother, not be the Mother.  When I became sick I saw my kids take on a more active role in my care.  I tell my kids I'm good when mostly I'm not.  I want them to be the kids who don't have to worry about their Mother.

When cleaning out my Mother's small apartment I came across one knitted slipper.  My Mother loved to knit.  When I was a child all my barbie clothes were knitted, my socks and sweaters, EVERYTHING!!  I hated it when I was little, now I cherish my knitted blankets.  So finding this one knitted slipper was golden.  Inside the slipper was a small ball of matching yarn.  I took the ball out and set it aside, I slipped the lone slipper on my foot and just like the magic in Cinderella, it fit perfectly.  For those who know me will understand, my feet are tiny, a child's 2.5.  So for this slipper to fit was amazing.  I'm going to say it was made for me because that just makes me feel better.  I never questioned for one second what to do with this treasure amongst the piles and piles of Church donations.  It was coming home with me to NS and I was giving it to the person God was telling me to at that very moment, my dear friend Heather Star.  Heather is an incredible friend, she has been with me through all my difficult times, happy times and scary times.  She took the day off of work the day I had brain surgery so she could see me through it with the power of prayer.  She sat with TJay for the gruelling 10 hours at the hospital, waiting for me to wake up.  I often wonder what TJay and Heather talked about for that many hours.  She's celebrated my children's achievements like they were her own.  We've cried together and also laughed until we cried!  If anyone could knit the matching slipper to my mom's half done project it was her.

Heather came to visit me not long after I returned from my Mother's passing in Quebec.  I handed her the slipper and asked if she could make this into a pair.  She left with the yarn and the one slipper, knowing she had been entrusted with an important job.

Several months had past and I had pretty much forgotten about this project, my head too full of taxes and payments and and and....anyone who has been an executor understands the amount of work that is involved.  Then one day Heather shows up with a pair of slippers.  One as beautiful as the other.  She explained that my mom had taught her something.  She had never knitted the stitch around the opening of the slipper the way my mom did, so she had to learn it.  Amazing how someone can teach even after they are gone.  As I inspected the slippers Heather showed me something so very special about each one.  She said you will always know which one your mother made as the one I knitted I sewed a small blue star inside.  Two identical slippers made by two different people with two very different meanings to me, both equally a treasure.

730 Days of Recovery

2 years ago today I was in the OR having my brain tumour "debulked" I was asked last night if 2 years felt like a long time.  The answer to that really has two parts.  Do I believe it has been two years since I've been off work?  NO, and I think that's partly because when your brain is shaken up like mine, your mind isn't really on work.  That amazingly goes to the back burner, even though its such a huge part of your life when you're in it.  Do I feel like it's been a long time floating around in the medical system.  Yes, a very, very long painful two years.  So in January last year on my 1 year "Craniversary" I wrote a post "365 Days of Recovery"  Today I repeat the blog idea, but with another year of reflection.  Here's what 730 days of recovery look like to me:

That drugs play a bigger role in recovery then I thought.
That having a Neurologist after almost 2 years is a good thing.
That falling through the biggest medical crack has hurt me physically and exhausted me mentally.
That my kids are still just as amazing, thoughtful, kind, human beings as they were 730 days ago.
That the word "Time" is a joke now.
That my eye ball will never have feeling in it nor will my vision correct, those days of wishing and waiting are over.
That you can still have headaches every single day.
That I have more specialist now and I'm grateful for everyone.
That there is a perception in Canada that you have to "accept" the Doctor/Specialist that you are referred to because our Health Care is free.
That not all Specialist graduated from the School Of Bed Side Manners, you don't need that energy as part of your Rock Star Specialist Team, choose wisely.
That these new drugs allow me to think more clearly.
That thinking can sometimes land me in bed from over doing it.
That MRI's are still hateful, and a warm smile and comforting words from an MRI tech can make or break your experience.
That on my 2 year "craniversary" I'm probably more hateful then hopeful.
That I never thought people I've never met in person, only through online support, would become household names.
That people who heal together, band together.
That I would rather own a condo or an apartment than a house.
That one of my true enjoyments of the day is watching the chickadees in my bird feeder.
That having a dog has brought me unbelievable joy even though he bit me.
That I'm extremely grateful that my brain tumour hasn't grown in 730 days.
That my tumour sits at 1.8cm x 1.6cm which is better then 2.5cm x 2.4cm x 2.1cm before surgery.
That there are still days I can't believe I have that blob in my little tiny pea head.
That my Radiation Oncologist classifies 2mm as growth, hmm not much wiggle room.
That once "growth" happens everything gets re-evaluated.
That I pray for no "growth"
That several people have passed away in my life which has me thinking about my own funeral.
That I don't want a funeral but rather a celebration of life.
That I'm aware of how "shockingly" good I look considering...umm thanks?
That as I remember things more clearly, it's like a kid in a candy store kind of excitement.
That I don't expect you to understand that.
That I'm no longer afraid.
That acceptance is a gravel road.
That the cold hurts my head and face.
That Tegretol has finally some what settled my Trigeminal Neuralgia, Thank God!
That I'm still blown away by people who "pop" out of brain surgery and carry on.
That anyone who knows me, knows that's exactly what I thought would happen to me.
That this has been the biggest lesson in human compassion anyone could have ever given to me.
That once again my problems are no different then your problems, mine are just in my head.
That if you didn't laugh at the above line you need more coffee.
That my kids accomplishments make me burst with enthusiastic pride.
That I wish my kids didn't have to deal with such big issues in their lives.
That being said they are the most loving, kind and well behaved kids as they know they are lucky to have their mom.
That my love for TJay has no spoken words other then he is the worst boyfriend ever.
That you wouldn't understand that inside joke but it is the best compliment I can give him.
That not only did TJay bite off 2 kids, but a brain tumour too.
That speaks volumes about the man he is for not "spitting out" that mouthful.
That I cherish this love and nurture it's growth.
That as I type this I get shocked to the face, thanks Tegretol for wrecking my faith in you settling my Trigeminal Neuralgia!
That loosing your hair can freak you out more then you ever thought.
That I get another new Doctor this year.
That I'm shocked to find out I was supposed to have this Doctor all along. (*cough* medical crack *cough*)
That I have a much deeper understanding for the medical system.
That I wish a was a Politician, no a Doctor, no wait a Researcher, to evoke change.
That I've started to ask myself after 730 days-at what point does it go from Recovery to Reality?

                                                                                      illustration by Phil Foster

365 Days of Recovery

It's here, the one year anniversary of Brain Surgery.  This time last year I was in the OR, having my brain tumour "debulked" .  I created a video in honor of my 1 year anniversary and while I'm pretty confidant that it will not win an Oscar, it will remain unpublished for some "tweaking" Not to be confused with "twerking" there will be NO twerking in that video. So, here in no particular order is what I've learned in the past 365 days?

That brain surgery as necessary as it is, Sucks!!
That a brain tumour is simply a mass of cells who get together and plan an "out of control teenage party" in your head.  As much as you think you can clean up the broken pieces, you just can't replace some of the valuables.
That the first few weeks of recovery were nothing like I had expected.
That the next few months of recovery were nothing like I had expected.
That the word " Time" became as much a part of me as my brain tumour itself.
That being Canadian is something to not only be proud of, but to be grateful for.
That LOVE is "in sickness and in health"
That you learn very quickly who the important people are in your life.
That the above statements truth was a powerful enlightenment.
That you can have a headache everyday.
That I will not let my brain tumour define me.
That my brain tumour has now become a big part of who I am and that's OK.
That people have an expectation of when you "should" be better.
That my brain thinks differently now and I find that fascinating and frustrating.
That being home with my kids for the past year is a silver lining in all of this.
That I thank God for each day.
That expressing my thoughts into words is like putting a jig saw puzzle together every day.
That life as I knew it does not exist anymore.
That I'm grateful for all my specialists.
That my life is great, even with teenagers partying in my head.
That perspective is way bigger then what we perceive.
That I took my perfect vision for granted, learning to live with double vision is interesting to say the least.
That Doctors are busy, the health care system is tasked and at the end of the day it's a business like any other business.
That MRI's are hateful and I still don't sleep the night before.
That Canada is NOW working towards counting every Brain Tumour, but it will take time.
That benign brain tumours although depending on location can be just as life threatening as malignant ones.
That my children remain fairly silent and I fear they are angry at me for getting sick.
That this is to big for me to even understand so how could I ever expect my kids too.
That life is too short not to eat Gluten every now and then, even when I suffer the next day.
That blogging makes me feel good, brings out raw emotions and allows me to express this journey.
That I never expected side effects from surgery, even though it was brain surgery.
That I am grateful I am alive, walking and taking however, I'm sick of my other symptoms being down played simply because I'm alive.
That I've learned more about myself in 365 days then in 40 years.
That having a hole in your head is just plain weird.
That I miss my job, my co-workers and the smell of 70% isopropyl alcohol and transpore/mircopore tape.
That science hasn't even come close medically to understanding the brain.
That in a perfect world Neurosurgeons would have brain surgery so they could truly understand that we are not all "text book" cases.  Perhaps there will be an "app" for that someday.
That I'm not afraid some days.
That I am afraid the other days.
That I continue to raise my kids in a a silly, loving, off the cuff manner, hoping they will learn that strength can come from your weakest moments.
That watching your kids minds process the fact that mom couldn't get the fork to her mouth, was just as confusing for us all.
That I have come a long long way in 12 months and no intentions on slowing down.
That radiation scares me but know it's something I should probably consider.
That having two caring and considerate children is a product of good parenting and God's will.
That I sometimes wonder what I would be complaining about right now if I was healthy.
That I'm grateful to Global News for thinking that Canada not having a National Brain Tumour registry is "newsworthy"
That I sit in silence way more then I used to.
That I can't imagine a life without T Jay, I am grateful and thankful for his unconditional love.
That health should not be measured in weight and height but defined in a mental state.
That I'm the luckiest Woman and Mother in the world.
That I'm thankful for the Twitter community of #BrainTumorThursday and #BTSM for their support
That my problems are no different then your problems..
That our society defines you by the work you do, being a brain tumour survivor was not in the "career choices" book at school.  Yet at the moment that is my full time job.

Hi my name is Kelly, I'm a Brain Tumour Survivor and I'm recovering one day at a time.

Cookie Cutter Kids

My daughter is a competitive cheerleader and loves it!!  Cheerleading has come along way from pom poms and raw raw raw.  It's crazy stunts with amazing tumbling all synced together to form an incredible display of hard work, discipline and love for the sport.  These girls work hard for 10 months of the year to compete a handful of times over 3 months.  The combination of dance, with gymnastics and meticulously counted stunts of small humans flying through the air is a site to see.  That all beings said these girls practice and practice a lot.  Our club has amazing coaches who spend their life at the gym working these kids to perfection. They have planned what they hope to be a winning routine and need the kids to give 100% every day they are there.  Well, we are talking kids here and last night as I sat and watched practice I was within seconds of leaving and sitting in my car.  I love watching them practice, I am amazed at how quickly these girls learn, I just wish they would listen to their coaches.  Almost every practice my daughter get a chat in the car about how important it is to be quiet and listen to them.  I'm sure she get sick of hearing it.  Last night the pressure in my head, like today is almost unbearable.  Whatever this rain/wind storm is, is NOT good for my poor little head.  So, last night I just couldn't deal with the noise because my head was going to explode.  However, this morning I thought about how many times the coaches say stop talking or blow their whistle and if I were a coach I would be crazy by now.  I said to my daughter last night if I were your coach you guys would spend half your class doing conditioning when you don't listen and maybe then you would realize how serious you need to take this.  Her response, "that's why you are not a coach".  Welllllll, actually my dear I'm not a coach because I was never a cheerleader and I'm sure a cartwheel or round off right now at my age and health would have me in traction, but I am a mom and I am an adult and you guys lack respect for your coaches by not listening. Have you noticed that you all get really quiet when you are made to do conditioning because you were all taking, again If I were a coach you'd spend half your time doing sit ups  As you can imagine the ride home was all about respecting their time and doing what you are told I'm sure she heard blah blah blah as all teenagers do.  So what is the answer, do I take my poor tumour ridden head and go to Tim Hortons where it's quiet and has hot tea.  Or do I stay and watch as I love to do and suffer it out?  I sit and suffer it out, because every time I go I am blown away at the athletics I see and I'm proud of my daughter's accomplishments.  So what's the answer to get 30 teenage girls to stop talking and listen?  HA, wouldn't every parent, teacher and any other person involved in mass teaching like to know?  Promise them a win, maybe some cookies? Nope, don't promise them anything, teach them respect.  Something that has been lost in our generation of parenting where we all feel that we need to undo the parenting of the past.  Parenting through a brain tumour sucks, I'm tired, medicated, in pain and cranky probably more times then not. However, there is no choice in my world but to try and teach them that respect will get you  through life further then disrespect. I don't want cookie cutter kids, I want kids who are not afraid to express themselves, their opinion and their rights as long as it's done with respect and if possible, quietly..... very, very quietly  :)

Second Chances

Yesterday I wrote a blog, I called it weighed down.  I didn't publish it even though it's exactly how I feel.  It talked about how life is measured in weights.  Your born, you are weighed, and oddly judged on that weight, big baby, tiny baby.  Society spends millions of dollars on the weight loss battle, aiming it all towards the battle of the bulge due to over indulgence.   But what about those who can't?  Simply can't, for whatever reason, exercise?  We never think of those people, we just think people are fat because they can't put the fork down.  Well, as I begin to get out of the house a little more and walking has become a far easier task.  I think about all those people, because I'm one of them.  It will be 7 months tomorrow and I'm just starting to feel myself.  I thought I was there a few months back, but a stint of thinking I was super women, had me over doing it.   Dumb thing to do, and now I realize that it's slow and steady that truly wins the recovery race.  This all weighed heavily on my mind...just another form of weight.

So as I whined yesterday and felt overly sad for myself,  I vowed to wake up a little different.  Today I thought about what I'm truly thankful for and the first thing that came to mind is second chances.  I've been given many in my life, so many that I was surprised when I started to think about them.

Growing up in a house of abuse my first memory of a second chance is travelling home in the back seat from the Portage Hotel.  No one was in any state to drive as we barreled back to our house in Stark's Corner.  I was the tender age of 8, my sister 12.  We were sleeping in the van because that's what drinking parents did with their kids, left them there to sleep as they chugged back a few.  I remember the engine's high pitch whine and the feeling of my stomach in my throat as we flew over the hills.  My Mother reaching back with her hand to protect us like an imaginary seat belt.  I remember clearly praying to get us home safe.  A second chance was indeed granted.

Sometimes we don't get second chances as this same road claimed a dear family member many years later, nothing to do with speed or alcohol.  Just bad timing.  I said goodbye to a casket, regrets of not enough visits home, not enough phone calls, now realizing that there aren't always second chances.

Becoming a ward of the court and becoming a foster child was certainly a second chance.  Foster parents and foster siblings who actually cared.  Trusted me enough to go out and cared if I came home.  Food, glorious, delicious food.  Meals around the table like a family.  A packed school lunch.  A shower, running water, a toilet.  A different outlook on life is before me. There is love in this house, I feel at home. Yes this indeed was a second chance.  I am blessed and I know it at the age of 15.  A second chance at life.

My daughter was born with immune system issues.  At the age of 9 she was hospitalized with H1N1, the Swine Flu had found her, despite all my efforts to try and keep her away from it. Fourteen days in hospital contained some of the scariest days of my life.  All I could do was pray as I, like everyone else, had no idea what this virus was capable of.  The insertion of a chest tube is what saved her life.  I am convinced of that, as litres of fluid poured from her tiny plural space.  I honestly don't know if I should look at this experience as my second chance with her or her second chance at life.  Either way, I know how precious life is as we don't always win the fight.

And then there's me, with this whole brain tumour thing.  Someday's when I say it out loud I still can't believe I have a tumour, add brain surgery to that and it becomes almost "movie" like.  I guess I've been given one more second chance.  A chance to live life, even though it's very different then pre-surgery.  I'm here to tell about it and that's pretty fantastic.  I love my second chances...each and every one.

Put Your Hands Together...

When an illness finds you and it's stubborn enough to hang around, you can't help but feel a bit helpless.  Since I use to hear quit frequently "I don't know how you do it"  (referring to working full time, raising two kids, one with health issues, kids events, blah blah blah all the things that every other Mother does for her kids)  I never felt I was doing anything extra special.  I was doing my job as a Mom and wanting to do it right.

Now I hear the same thing.."I don't know how you do it"  However, this time it's all of the above and a brain tumour too.  And I can tell you how I do it, it's with help.  I've had/have so much help that I think it's certainly worth mentioning because you just can't do this with out it. I'm blessed to have received this help in so many different ways, each one unique, each one I'm grateful for.  So if you could put your hands together and applaud the following for their contribution in the "lets help Kelly down recovery road campaign"   In no particular order...I love and appreciate the following...and they know why:

T Jay               Mom          Simon         The Brain Tumour Foundation of Canada
Dawn 1           Zackary      Jim              My co-workers
Laura              Kyra           John            Heather 1
Jen                  Shipra         Haley          Heather 2
Peggy              James         Wendy        Lindsay
Sue                 Glenda        Helen          Sheila
Ann                 Ona            Aunt Agnes Madi
Sussie             Todd           Joe              Andy
Ally                 Sophia        Angie          Thousands of prayers from people I've never met
Shirley             Christine     Lesley         Thousands of prayers from people I know
Christy            Ron             Brian           Countless get well cards and FB wishes
Steve              Amy            Tracey        Karen
Tanya             Peter            Zoe            Shawn 1
Jorden            Steven         Dawn 2       Alison
Sonja             Shawn 2       Caren         Connie
Ivy                 Linda            Ellen           Shawn 3
Greg              Jared            Spike          Brandon
Brandon         Mary            Meghan      Dr Lecky   
Dr McLean    Dr Lwu        Dr. Mulroy  Dr Tan
EASE            The Balance Clinic           7.3 Step Down

And finally to the two Nurse who never said BOO when I INSISTED they take me back to recovery to get the proper adapter for my Art-line.   (OH MY GAWD, can you imagine)  How I can remember this clear as a bell but can't remember names, I will never know!!!!

So, in the end I don't have to say what everyone did or how they helped, but helped they did.  I am and will forever be, grateful for each and everyone of them.

If by some chance I have forgotten someone, I am simply going to pull the brain tumour card and say, "Seriously, I have a brain tumour, how do you ever expect me to remember all of that"  LOL
Thanks for being super awesome in my life everyone.  And a special thanks to T Jay and my kids for letting me pull the brain tumour card almost everyday to which they only "groan" 50% of the time.  :)

Playing Catch-up with Ketchup

Have you ever noticed that we are sometimes too quick to point out the negatives, find the faults or not willing to admit when we are wrong?   As we age and mature we should get better at embracing the positives, but unless you have mastered Buddhism, chances are good you still falter every now and then.  I like to call this faltering a funk, and I'm in one right now.  The great news is, I know I'm here, I recognize it, and I'm embracing it.

All this self embracing has a lot to do with my brain playing catch-up or as I call it now, ketchup brain. You know when you take a Heinz glass ketchup bottle and no matter how hard you smack the bottom, it will not come out.  Well, I feel like my head needs a few good smacks to try and get the words to flow.  I can't remember names, certain words or even what I was trying to say. I could name all the plants in my gardens, now I just stare at them, hoping they will scream at me "I'm an astilbe, a pink one, I was here last year, don't you remember!!!!"   I've searched other sites on brain tumours and brain surgery and it seems to be a common complaint.  Another thing that is also common are people who don't have a brain tumour or who haven't had brain surgery tend to say oh it's just because of your age, it happens to me too.  Which is extremely frustrating to all of us who are living in this brain tumour hell because it's more then age "this" has not just happened to you. I did not have ketchup brain before any of this, it's embarrassing and I really wish I knew a way to speed it up.  Hence part of my "funk", figuring out just how much my life has changed since Bubblegum and Honeycomb took up residency.

So putting ketchup brain aside, I knew I was falling into this funk by rereading my last post on Mother's day, "The Unbreakable Bond of Motherhood"  I wrote something that is only partly true and it very unfair.  Yes all my biological family lives in Quebec and Ontario, yes I was raising my kids pretty much on my own and yes I do have a Foster Family here in NS who I don't see much off.  However, they have helped me in many ways.  First off,  they instilled the values in me that I teach my kids today.  Growing up as a child/teen in a house of abuse, I wouldn't be the person I am today if it wasn't for being saved at the age of 15 by my Foster Family.  My Foster Dad John, is the first man who I ever learned to trust, who showed me kindness, who walked me down the isle, who saved my ass when my mortgage fell through on the 11th hour.  He came into the hospital to see Haley and I when everyone else was scared to be around us because of the H1N1.  He brought Zack Popsicles when he had his tonsils out and he is the reason I got to spend my 40th birthday in Havana.  I can hardly call this "no help what so ever."  So as I said above about maturing and willing to admit when you are wrong, well this is one of them  I just had to knock some of the ketchup out of my brain to realize it.

The Unbreakable Bond of Motherhood

Mother's Day, the day of reflection.  At least it is for me.  I like to spend Mother's Day going over the last 12 years in my head.  Memories of ewwy gooey paint, play-dough, first Christmas Concerts and in our family's case, the IWK Hospital.  Being a mom to a child/children who is/where sick is no different then any other mom, we just have more grey hair.

My first born is a Clomid baby (fertility drugs), and if you had to do any kind of fertility treatments you will understand the exhausting care and planning that is involved in trying to conceive   I spent a good part of my 20's in anger over women who just "happened" to get pregnant or called it a "mistake"  My infertility took over my life,    a devastating miscarriage at 16 weeks, then finally on Christmas Eve Day I found out I was pregnant again.  A pregnancy that was not routine by any means, led to a healthy baby girl weighing 7lbs 5oz.  Everything was fine until she was 2 days old when she had a terrible allergic reaction to the diapers in the hospital,  it was like someone poured hot water all over her diaper area.  Easy fix they told me, just change the diaper brand.  That reaction was just the start of years of trips to the ER, countless specialist, x-rays, blood test and antibiotics.

Haley was diagnosed with a condition called Hypogammaglobulinemia (THI) at the age of 1.  This is one of the better immune deficiencies you can have, their immune system kicks in around the age of 2 or 3 and they tend to live normal healthy lives. When Haley was 2 years plus a week she welcomed a baby brother into her life, he was not a Clomid baby, therefore, he was free :)  Zack, a chubby 7lb 4oz little guy was brought into our life at a point when Haley was constantly sick.  Being on Mat. leave certainly did help to limit the amount of germs she was exposed to but it was still difficult.  After returning to work for  about 2 months it was obvious that I had more sick calls then work time and quitting my job to care for my children was my only option.  I then opened my home to friend's children and became a day time Mommy to a handful of kids as their parents worked.  It was perfect, it allowed me to be home with both children, especially her, when she needed me most.  Some of my best memories are of being a mom and a "day time mommy"

As much as Haley should have been getting better according to her Doctors, simply due to age and immune system maturity, she wasn't.  Zack was not without his own illness as he would pick up a lot of what she had.  He however, suffered from his own problem, digestive issues. Why do they both have digestive problems?     This is when I began to really do my research.  I swear I'm a MD, I just don't have the paper to prove it...self taught all the way. I became fascinated with how the immune system worked, why are they doing this blood test, why does she get the same repeated illness time and time again?  You have to understand Haley was sick ALL THE TIME, ear infection, lung infections, Pneumonia, chronic bronchitis,  bad gastrointestinal issues, measles, E coli, roseola so many times I'd lost count, all of this before the age of three.  She had an Immunologist Dr Izzukutz at the IWK and still does to this day, a Pediatrician, Dr Blake who was amazing and Haley knew who at the lab she wanted taking her blood and who she didn't.  All of this time spent in hospital and researching of blood types and cells led me to return to school to became a Phlebotomist.

While studying one night after a very long day of Zack not feeling well because of his tummy and she was starting to get sick, spiking a high fever, we had a horrible scare.  Haley and Zack's dad (Todd, my ex husband) works on the oil rigs and had just returned home from a long stint away.  As we tried to settle her, Zack, at the age of 3 was insistent that he needed to use the toilet.  From her room to the bathroom to her room I hear, "Mommy the poop won't come out" and there is my son sitting on the toilet with his bowels hanging out of his body.  I panicked, as Todd called the IWK and after EVERYTHING I had been through with Haley, I had no idea what to do. Upon instruction to bring him into EMERG by car since he was not bleeding I did what I was told.  It was the first time I had to choose which sick kid to be with, I never want to have to make that choice ever again.  I was told in EMERG that he had a prolapsed bowel, off to the IWK the following day to see a bowel specialist and testing for CF.  Apparently this can show up in patients with Cystic Fibrosis.  I was so thankful that the sweat test (to test for CF) came back negative but now I was taking Zack to regular IWK appointments to see Dr. Blake and a bowel specialist.  He was now taking a drug called Peg 3350, truly a miracle drug for his issues.  I felt between the two of them we spent more time at the IWK, for appointments, then we did at home.

Through all this I continued to study, caring for my kids pretty much on my own due to my Ex's work and at this point my marriage fell apart. I have absolutely no help of any kind here in Nova Scotia as all my biological family live in Quebec and Ontario.  (I do have a foster family here in Nova Scotia but we don't see much of one another)   I was on my own so I finished school and the kids and I moved to the city. I very quickly created a network of friends who to this day I call my family and would bend over backwards to help them.  I started working at our adult hospital on a casual basis and my fascination and amazement at how all that is wrong with the body can almost always be found through a blood test was born. I love my job and miss it everyday...now that I'm off.

There were many sick calls at my new job as Haley's illnesses continued.  However, now there seemed to be a gap in between them, finally small breaks where she was healthy.  In 2009 the H1N1 scare hit Nova Scotia.  As a health care worker we were given the vaccine early to prevent us from getting sick.  I remember saying to a co-worker I have to get this vaccine, if I bring this home to Haley it will kill her.  And kill her it almost did.  She fell ill on a Thursday night, I will never forget this. Like any other time she awoke with a high fever she would come and crawl into bed with me but this time she was in horrible pain, complaining that her back hurt.  Through every chest infection she's had I've never heard this child complain of pain.  By Sunday we had been admitted to hospital with the confirmation through nasal fluid testing that she did indeed have H1N1.  7 Days later we were in PICU having a chest tube inserted, her plural cavity on the left side had completely filled with fluid.  There was no air entry in her left lung, her kidneys were not working properly, blood work every 4 hours, pneumonia from the H1N1, then bacterial pneumonia on top of that, and a constant fever, that by the end of this horrific illness, lasted over 14 days.  It was by far the scariest time in my life, I was helpless and at the mercy of health care professional who were learning as they went along due to the unknown characteristic of this illness. Haley's Dad took time off work to be with Zack and us.  He would drop Zack off at school and come into the hospital for the day until it was time to pick him up again.  He would bring me food and sit with her while I used the "family" shower down the hall.  I felt even being away from her for that 20 minutes was too long. Thank God Todd's work was very understanding giving him the time off he needed.  After two weeks in hospital she pulled through but, it took a couple of months of recovery before she was back to her normal self.  During this time I can't even begin to say enough about my amazing co-workers, my employer, my friends and family who helped us get though it.

We've had the "normal Haley illness" sudden onset of fevers, chest infections, sinus etc since then but nothing as scary as H1N1.  She has annual check ups with her Immunologist, who confirm year after year that her immune system is just not the same as others.  She's a fighter like her mom and oddly enough she has only been really sick 4 or 5 times in the past 12 months.  Like I've said in a past blog, one at a time in this house.

I'm Happy to report that other then a tonsillectomy from too many strep throats when Zack was 7, he is a healthy 10 year old now.

I'm blessed on this mothers day to be able to reflect back on all my hard work.  I have two AMAZING kids who "get it" because they've had to.  They are not whinny or sulky, they are caring and kind all because life threw them some curve balls.  They have a Mother who through all of this crazy madness never gave up, or gave in.  I've taught them to embrace it all and keep going.  Life is not easy, it's not supposed to be, but together we have proven that we can get through anything.  Now that the tables have turned somewhat and I'm the sick one, I have no doubt in my mind they will be by my side every step of the way, we have created an unbreakable bond.

Spring Sprint...or Crawl

Four months ago today we tried to give Bubblegum and Honeycomb their eviction notice, unsuccessfully I might add, so from this day on I will call these days (the 11th of the month) my post op birthdays. I get to celebrate my post op birthday is an amazing way, I'm going to attempt the Spring Sprint for the Brain Tumour Foundation of Canada.  It's a 2.5 or a 5km walk to raise awareness and much needed funds for Brain Tumour research.  I am very excited to do this but very nervous.  My balance and co-ordination is much worse around moving objects (other people in this case) AND that's a long walk.  Certainly is strange thinking 2.5km is a long way since before surgery I walked 5km almost nightly.  However, under the circumstances I won't beat myself up over it and will be back to long walks in due time....(there's that word again....TIME)
So, with T Jay, my amazing kids, my best friend, and one of my sweetest co-workers by my side we will set out this morning and see what we can do.  Thanks to all who supported us, Bubblegum and Honeycomb (my brain tenants) thank you!!!  :)

Have Tumour...Will Travel

We're back and Cuba for Christmas was fantastic. Certainly well worth all the hard work it took to save for our awesome vacation.  Seeing Cuba through your kids eyes is something I will never forget.  They were in awe of the culture and people just like I was last year.  I couldn't be more proud of their grace and kindness, I am one proud momma.

Having left the day after getting my MRI results I vowed not to think about anything she had to say to me.  Every time I caught myself wondering or asking myself the "what ifs" I'd turn to something of beauty and thanked God for the opportunity to be there to see it.  Of course I had my moments to myself on the beach or in the pool but I think I'm allowed those every once in a while.

The MRI was no surprise really, Honeycomb is still where he was and bubblegum looks like someone popped him.  Just a flat piece of gum stuck in my brain, she referred to that piece of gum as a "carpet", I hate carpet!!!  So I was expecting to her ask how things were going, like physio and my eye sight and she did but then the conversation very quickly turned to options.  Options?  what does that mean, what options?  I thought surgery was the option and then you recovered, got better, went back to work.  Hmmm, not the case.  She said that it made sense to think about radiation while the tumour is small, but of course it is my decision.  She would speak with her colleague about seeing me and providing me with more information.  As we left the office and began our vacation, T Jay and I thought I guess we'll see what they say down the road, it's only information after all.  Well after opening the mail the day after our return "down the road" is only three weeks away.  Geesh, I thought that's a short road, nothing like being thrown right back into it.  As I once again spent an hour or so processing new information in my inward withdrawn manner I thought suck it up.  Me, my family and my tumour just spent an amazing week South, that was my break.  And although I came back to full on appointments again how can you not count your blessings for what matters most, spending time with family.  Yes the vacation we had was not 100% of what I had in mind when I originally booked it before my diagnoses, it was better!!!  Watching them play in the surf, extending kindness to others and just hanging out.  It's going to take a lot more then a brain tumour to stop me from enjoying that.

It's a miracle

What a day!!!  As I type this I do so without glasses, and since I don't know how long my amazing vision will last, this will be a quick post.

Every morning when I wake up and open my eyes there are two dressers, two lights, two huge messes on my bedroom floor.  I only have one dresser, one light and I'm only half a slob, what I do have is double vision.  As I've written in past posts, my double vision was first corrected by me tilting my head to the left to compensate for the right eye's issues.  Then trips to the eye clinic had me sporting new glasses with prisms and my life became manageable.

Yesterday my "brain itch" (any of you who had brain surgery can relate to this highly annoying feeling of ants crawling inside your head) was horrific.  I said to T Jay last night that if I loose my mind it will be because of brain itch.....AHHHH I can't stand it.  I thought maybe I over did it, raking the dead plant material from my front flower bed yesterday.

This morning started like all other mornings, the alarm goes off I open my eyes and my day begins.  I get the kids up for school, make their breakfast, pack their lunch and ship the first one out the door.  Since I've been home recovering from brain surgery I've watched them get to and on the bus safely every morning.  This morning was no different except it's nice and sunny here today.  I rubbed my eyes as the sun was too strong on them and I scream to my son, who I startled the heck out of.  "Is my head straight...look mom's not wearing any glasses and there is only one of you!!"  He replies with a big smile and a yes mom your head is straight.  I am beyond excited, off to the mirror I go, yes my head IS straight.  WOW, I don't understand and I don't know why I can see today without my prisms but I will take every minute of it (so far three hours)  I'm sure it has everything to do with healing and swelling going down and lots of other medical explanations but I like the idea of "It's a Miracle" way better.

Merry Christmas

Last March I had the amazing experience of bringing in my 40th birthday on a roof top in Havana Cuba.  I fell in love with the culture, the people and the history. This was my first vacation ever and now I understand why people do it year after year!!!  I jammed everything I could possibly experience in 7 days thinking I would never get the chance to go back being a single mom and all. (at the time)  All I could think about when I was there was this would be so cool for my kids to see and what an awesome reality check it would be.  They certainly are not spoiled by any means but we do live in Canada after all...we are all spoiled here in comparison.

Returning home I suddenly realized that I could take my kids, it would just take some saving and planning.  I spoke with my family Dr about taking them as my daughter has an immune deficiency, he had no problem with it, made some suggestions and then I went into major planning mode.

 I went to my bank and opened a savings account with the sad amount of $50.00 knowing that I only had three car payments left.  My plan was to take the car payment money that I was use to paying and dump it into my savings account.  I knew I needed 9 months of car payments to get the three of us to Cuba.  I made cut backs in other areas, got rid of cable TV, watched what we bought at the grocery store, little things added up.  Three problems presented themselves, there was no way I could afford Christmas and Cuba and 9 months took us to April 2013.  That's when Cuba for Christmas was born, what an amazing gift of culture that would be.  My plan was to give my kids new suitcases with sunny south things, like bathing suits, sunglasses and a note saying we were going to Cuba.  I started collecting these items in the summer, with the closing out of Zellers, it was a God send on my budget.

I was busting at the seams with excitement when I booked the trip September 27th turning into an organizational freak, this was going to be such an amazing adventure for the four of us. I was feeling awesome about my life, I met the man of my dreams, together creating a Christmas my kids would never forget.   Six days later I was diagnosed with my brain tumour and the wind blew out of my sails.  Suddenly, my life was about MRI's and surgery dates not the sunny south.  Why?  Why do bad things always happen to good people?  For the first time in my life my mental health was in question as I slipped into a depression.  I went from the person who can do anything to the person who just couldn't.

Surgery booked, surgery cancelled, surgery maybe next week, maybe the week after, all the while I'm sinking both mentally and physically and I know it.  My mind is spinning, do I go ahead and give them the trip, all I can think about is the "what ifs"  I seek help, and with to many light bulb moments to count, I'm back mentally.  Although I'm feeling the physical affects I push on realizing that if this trip is meant to happen, God will allow it and that's where I place my trust.

December 25 arrives, still no surgery and Cuba for Christmas is given.  My kids are as excited as a 12 and 10 year old can be having to wait 4 months to get their present.  We read the reviews, look at the pictures and get as excited as we can.  As soon as the Christmas break was over the phone rings, my surgery was booked for January 11th.  Hooray I think, plenty of time to get this done and be my old self again...wooo hoooo!!!

Well brain surgery ain't all it's cracked up to be, I can tell you that!!!! It's been a long recovery and 13 weeks later, I'm just started to feel myself again.  As Cuba for Christmas is fast approaching I am blown away that not only was I able to organize it in all this chaos but timing IS everything. Although this trip might not be as adventurous as it would have been as a non brain tumour survivor it will be everything it is meant to be, time spent with family.  I'm so blessed to be given this opportunity to have this experience with three people I love so dearly.  One week with no Doctors, no physio, no appointments at all and NO thinking about the "what if's"  It's a tumour free week that we all deserve.  Merry Christmas to my family

10 Awesome things about having a brain tumor

I know what you're thinking...what in the heck could be awesome about having a brain tumor...well here's what I think:

1. I know that my better half T Jay is my life long partner.  Now it really didn't take a brain tumor to bring that out but when you go through 7 month of hell and you have only been together 8, chances are good he's sticking around.  I couldn't love someone more, I am blessed.

2.  Speaking of blessed...you become just that, blessed.  I have the most amazing friends in the world.  I have created an unbreakable chain and bond with people who have become my family...brain tumors bring out the best in people.

3. I got to meet a Neurosurgeon...it's like meeting an astronaut..well kind of, but not really.  Actually Neurosurgeons are at the top of the hospital food chain so to speak and I have the best one.  (I actually work at the hospital that I had my surgery at so I've met a Neurosurgeon or two in my time, but I've never had one inside my head before...so it counts)

4.  I have the best excuse for all the stupid things I do.  "Oh I put the wrong pin number in...that's because I have a brain tumor" (I use that one a lot actually)...I mispronounce a word or used it completely wrong in a sentence...it's because I have a brain tumor.  I ran into a wall, yup it's because I have a brain tumor...see how this works for me.  I no longer have to use the "Well it's because I'm blond" anymore...mov'n on to bigger and better excuses!!!!!

5.  I have a team of Doctors with all kinds of different specialties working to make me better.  How cool is that?

6.  I live in Canada, where my taxes and my fellow Canadian taxes paid for my surgery and subsequent Doctors appointments.  We have each other's backs in this Country and that really IS awesome.

7.  I can't feel the right side my head of face (more from the brain surgery then the brain tumor itself but it still counts, cause it's my blog and I say so......anyway I've bumped my head twice now, actually bumped in the wrong word...smacked really, and I didn't feel it, that's awesome in a weird way.

8.   I have a lovely collection of wine in my wine rack, can't drink it due to the meds, so it looks pretty in my kitchen.

9.  We get to participate in our first Brain Tumour Foundation of Canada Spring Sprint  as a family.  Love raising money for good causes, and this is one of them...27 Canadians are diagnosed EVERY DAY with a brain tumor, that's more then one an hour...think about it...crazy eh?  So of course it would only be fitting to let you link to my fundraising page here ..Recovery Roadsters, how awesome are we!!!

10.  The most awesome of all...my children have learned that even Moms break sometimes.  That it's ok to see someone you love unwell, and as hard as that has been it's life.  The lesson is to fight and fight hard, stay strong and positive, and always be yourself.  If it's a bad day, it's ok to say that, cause the good days need to be cherished.