Wowzers what a week. Monday started off with me being interviewed by the most watched morning TV show in Atlantic Canada, CTV Morning Live. The thought of live TV terrified me, what if my brain just can't find the words I want to say! However, Heidi Petracek, the co-host made the whole experience so easy. She is a ball of energy that you can't help but feed off of. So pretty much what I had planned to say didn't really happen but I'm pleased with what did end up coming out of my mouth. Any awareness about brain tumours, The Brain Tumour Foundation and the Halifax Spring Sprint was worth the risk of possibly going mute, crying or even getting sick on live TV. Luckily none of that happened :)
Tuesday had me entering the iconic CBC Radio Building in Halifax for an interview with Don Connolly of Information Morning. This interview being taped, I thought it would be that much easier, I was wrong. Mr Connolly certainly is a great conversationalist and made the interview a wonderful experience. However, my brain was certainly in overdrive. I have described my brain in the past as a large set of filing cabinets, each containing well organized information. I've also written a blog post explaining that brain surgery is like someone has gone into those filing cabinets and dumped them, mixing up a well organized system. I continue to reorganize these imaginary files everyday but they are by no means anywhere close to what I once had. So my interview had me scrambling to find the words I wanted to use, the information I wanted to share, the message I wanted to portray. I was actually surprised when I heard it Thursday morning, although there is so much more I could have said, it wasn't bad for having a disorganized brain.
Although these two events were just minutes out of each day, they certainly were a stress that I'm not accustomed to. Sounds kind of funny as one would think the stress of having a brain tumour would compare, but media is kind of a one shot deal. The brain tumour, well, I've been carrying it around knowingly for a year and half now, so I'm getting used to it's weight on my soul. Last evening however, my tumour had one of it's toddler temper tantrum fits and decided to throw a very powerful, long lasting hit of trigeminal neuralgia my way. Trigeminal Neuralgia is painful shocks to the face, eyes, teeth, anywhere those trigeminal nerves run along the face. As I've said before, although I experience it everyday, the complication from surgery which has my right side of my face almost completely numb, has been a benefit from the debilitating shocks. However, I do have places on my face I feel and did I ever get slammed last night. This shock stayed on, like someone had turned on a light switch and lasted for a good minute. That may not seem long to someone who has never experienced lightning striking your face, but to those who know this pain, a minute is an eternity. It actually scared me and I've taken it as a warning that over doing it is never in my best interest. Today, my face is certainly getting zapped but nothing in comparison to last night. Today has now become a rest day.
Tomorrow is the big day, Spring Sprint day. It's a fun family run that is not timed but rather a gathering of brain tumour survivors with their family and friends who can run or walk 2.5km or 5km. It is also a place for family and friends to gather to remember those they have lost, to honour their memory, to get comfort. I will be there with my amazing little family and my wonderful friends who together we have formed the Recovery Roadsters. I am honoured and grateful to have them walking Recovery Road with me, not just the 2.5 km but everyday. I am so blessed. Ironically Monday has me sliding in that MRI tube once again for my next brain "check up." Of course the stress of this is weighing on my mind. On twitter, those of us in the brain tumour community # "hashtag" it as #scanxiety, a made up word by a lady in the UK, that couldn't be more accurate. Anyone who has to have regular MRI for whatever ails you, would understand the anxiety that comes with it and the stress of waiting for the results. Sigh!!! So what do I have on the go for Tuesday? A massage, a well needed, well deserved massage.
If you would like to donate to the Recovery Roadsters you can do so by visiting my donation page here. My family, friends and my misbehaving tumour, thanks you
Showing posts with label family. Show all posts
Showing posts with label family. Show all posts
Friday, May 9, 2014
Saturday, January 11, 2014
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.
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.
Saturday, August 10, 2013
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.
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.
Friday, June 14, 2013
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. :)
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. :)
Thursday, May 16, 2013
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.
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.
Sunday, May 12, 2013
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.
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.
Friday, May 3, 2013
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.
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.
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