Monthly Archives: June 2015

My Thoughts as a Cancer Mama

Nobody Told Me Life AFTER Cancer would be so Hard!

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My son’s last day of chemo was a Sunday. I watched as the very last drop of poison dripped into my baby’s IV line, and then we were officially discharged from our very last hospital stay. He got out of bed, put on his batman cape and walked out of the Cancer ward. Some of the nurses clapped and kids cheered, others just looked and smiled. My little bald 2 year old stopped and turned to wave like he was the King of England. The nurses cried and there were hugs all around. I had a goofy smile on my face…but it wasn’t real.

I was more scared than ever. For 48 weeks, I had dreamed of this day, the day that my son’s chemotherapy would be done. It was my light at the end of my cancer horror tunnel. I had dreamed of this day ever since Griffin was diagnosed with Rhabdomyosarcoma behind his eye when he was 22 months old. We survived 48 weeks of chemo, 25 radiation treatments directly to his face, 11 blood transfusions, neuropathy (so bad that he still has trouble walking)  and had no use of his thumbs and fingers. He had mass amounts of pokes, prods, xrays, blood draws, etc. I cuddled him as his hair slowly fell out. I rubbed his back as he would sleep through the pain. Even though I did not have cancer myself, this Cancer fight was just as much mine as it was my son’s.And now it was here. The end of our Cancer fight! So why was I so terrified?

I felt lost. I felt abandoned, I felt alone.

When you start your treatments, your cancer team gives you a piece of paper with your timelines. Everyone is different but most people have a basic idea when and how long treatments are going to be, when your MRIs and CT scans are, when radiation is scheduled, etc. You are on a strict schedule of clinic visits and then in-patient time. Your day is filled with medication schedules, feeding pump schedules, outpatient therapy schedules. But once you hear that word, “remission,” you are suddenly dropped like a hot potato.

We went from clinic visits at least twice a week (sometimes three) plus once a month, a full week of treatment admitted to the hospital ward. You had access to all your doctors, to child life, to physio, OT, dietitians, plus nurses to answer all questions. Yesterday you were a cancer patient, a team of 6 doctors at your beck and call. And today? You are told to transition back under your family doctor’s care. WHAT? My family doctor had no clue about the meds my kid is on or the effects it has on him. How long do all these meds stay in his system? How long do we live like hermits, avoiding germs and germy people? When can my life go back to normal? What if he gets a cough? How long do we keep his port in? Why do I feel like I’ve been abandoned? There is no schedule for my life now! What do I do? I was the only one in charge of his care now. If he gets sick, it’s on me, I make the decisions. I did not like this at all.

I could not believe how high my stress and anxiety got at this point.

I was warrior mama up until then, beating cancer down with my bare hands. And then I just became a pile of mush. I think I finally let myself FEEL everything I had been bottling up over the past year. Now that my son was cancer free, there was time for me to deal, to feel, to cry. I was processing the fact that my baby could have died. I never really let myself think about that fact before. I had to suppress that fact just to get through the day. Now I have to deal with the fact that my boy with never be the same — he has scars that will be with him his entire life. And I have to deal with the fact that I will never be the same either. I have seen the dark side of cancer.

It was at this low point when I had to choose if I wanted to keep fighting or let cancer take over my life.

I chose not to be a victim anymore.

I was going to control my journey and take my life back. That is when I started these “Cancer Mama” blogs. At first it was just a place to vent, a place to barf all my feelings down in print. (That is why there is no editing) It helps me to share my experiences. I hope it helps others to read that they are not alone.

Nobody told me how hard ENDING cancer treatment would be. No one talks about the feelings AFTER remission. I expected that once October came around, I would get out of my PJs, put on my dress clothes and head back to work with a smile on my face and a spring in my step. I didn’t go back to work until the following April. I spent a lot of time at my therapist’s office (THANK YOU AMY!) who was able to hear my woes and turn them into healthy living and healing. It’s easy to stay in a funk —the cancer cloud can hang onto you, and over you, forever. But don’t let it win Mamas! Climb that mountain and don’t be a victim anymore – it’s not easy, but you aren’t alone.

My Thoughts as a Cancer Mama

And then Today Happens…

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You think you are going along ok…you think you have everything under control, you think today is just another day in the life of a cancer mama. Then a series of events happens, to where I’m sitting in a stall in the bathroom at work trying to cry silently so no one will hear me. The more you try to cry quietly, the louder it gets. FYI lolA very dear friend a work lost her husband to cancer a number of years ago. She still wears her wedding band and talks about him like it was yesterday. We have very different views on cancer. She looks at it like a curse, like the black spot of death had attacked her family and took her husband. And she is right of course. I just SEE it differently, yes, cancer sucks, but its also brought my family together, my bond with my son, hubby and family is stronger than ever! I guess maybe, if our path was different, maybe I would have a different outlook as well?

But lately, she has been very hard on herself, I can see that she is struggling in her daily life. I can see that she is struggling to see the good. Time is not going to heal this woman’s wounds. Neither is a good cuppa tea (as my Nanny would say) This woman needs more than I can give her and I just don’t know what it is. Everyday I sit beside her and I see her shrinking, slowly slipping away, looking more and more sad and older. The stress of cancer has taken its toll on this beautiful woman. She wears her battle scars across her face. I see the pain, the heartache and the loss. I weep for her, I weep for all the mothers, wives, sisters, and aunts would have lost a loved one, its not fair. It will never be fair. This woman will never be the same, her heart will never be healed, but I hope one day she will find the strength deep down inside and start to pick up the pieces of her broken heart. Its a painful process. You spend all that time, building a wall up, to protect yourself from the pain, but its really just a numbing effect. You are not really healing if you don’t. You just build up a scab that is harder and more painful to rip off when you are ready to deal with it. Yes, it hurts, yes its not easy but in the long run, its better for you!!!

I wish I had a secret formula to fix people like this. The broken hearted. Cancer victims that were never sick but will never recover from thier dance with cancer. I wish I could wave my magic wand and *poof* she is happy again, she smiles without it looking painful. Her smile would reach her eyes and her soul. Now her smile is just a mask to get her through her day.

Days like this hurt my heart, like an actual painful throb that I can feel. I mourn for my friend that is hurting and there is nothing I can do. I mourn for our innocence that is lost. I mourn for her happiness that looks so very far away. I hate that she never learned anything from her husband’s cancer fight, like how strong she is, or what an amazing mother and wife she is. She only sees the negative. She didn’t bond with other cancer wives or families, she doesn’t participate in the amazing walks and fundraisers that bring like minded cancer fighters together…

Keep Calm and Remember.All I can do is listen as she shares her stories, her worries and her troubles. I have nothing to help, this is a fight she has to do herself. But I can be here for her as she battles, its just up to her to WANT to do it!!!

Sigh…some days like this I wish I was a Wonder Woman, able to take everyone’s troubles and fix. Oh hum, I’m just a regular wife, mother and Cancer fighter that works a full time job and writes this very odd blog while sitting in the stall in her work washroom. Odd, i know, but it works! heheheehe

My Thoughts as a Cancer Mama

Holidays-It’s the little things

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appreciateI’ve never been really huge into the whole holiday thing. I love getting together with family and friends and the feasts are always wonderful, but other than that, holidays could come a go and I really wouldn’t care.

Then cancer hit, rocked my world, now I count my blessings each holiday we have with our little boy. We came so close to losing him, I can’t help to cry each holiday dinner we sit down as a family and raise our glasses to other year.

Easter/Ostara just passed, we didn’t do much of anything special, we got together with my parents a couple of times over the weekend for dinners. But Marty, Griffin and I had a relatively “lazy” weekend at home. We washed all the cars and trucks and cleaned them out (There is that lost mitten! Ooo, that french fry looks several months old!) Griffin was all into helping us, he even vaccuumed out the back seat! This time last year, he couldn’t climb into the car, his fingers were not strong enough to hold a pencil, nevermind the vaccuumm hose…so many big changes in his life! With a lot of hard work, so many things are going back to normal!

I’m beginning to relax a little, letting myself ENJOY these moments we do have. We are so very lucky that our dance with cancer was short n sweet. I intend to never dance that dance again!!!

So a very Happy Easter/Ostara/Spring to everyone!

Cheers!

My Thoughts as a Cancer Mama

Pondering, Rainy Day Doom

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The snow has finally melted here in Ontario Canada, its been a very long winter for us. Today its a rainy day, lots of grey clouds, fog and rain. A cool wind whips your hair around your face as you dash to your car, avoiding puddles in the empty parking lot. I sit in my car enjoying the thunderous spattering noise of rain hitting the roof and windsheild. It’s a calming sound for me, it clears my head. It’s been a very busy couple of weeks for me. I organized our local Daffodil campaign for the Canadian Cancer Society, then I worked a lot of shifts, on top of my full time job. I’m physically and mentally exhausted. It’s not just selling a few pins. It’s standing on your feet for hours, smiling, but you also hear story after story of how cancer has affected people’s lives. My heart reaches out to each and every person that shares their story. Lots of hugs are exchanged, whispers of good luck, as they hustle along doing thier errends. Some are survivors, some lost a loved one, some are still fighting and then others are angry. They think that a cure as been found but drug companies are keeping the secret to make more money. I have trouble shaking the lasting effects of these people. It must be so hard living a life filled with so much negativity and hate. And then to feel the need to spread your negativity to an innocent volunteer who has nothing to do with drug companies? sigh…I take a deep breath, breathing in the glorious spring air and the smell of rain. It’s wonderful. I feel my body relaxing and my mind starts to wander. I remember sitting in this car, in the parking lot of Ronald McDonald House when Griffin was at his sickest. I remember the rain and the gloom and sitting there balling my eyes out. I retreated to my car to cry by myself. I remember thinking I couldn’t do this anymore. I remember questioning why me? Why my child? Why my little family? I remember wishing that I could take Griffin’s cancer, I would sacrifice my own life for his in a heartbeat. Why my only little baby? Why cancer? Why so much sickness and pain? I sat in that car for a very long time, hoping the rain would wash me away with it…

Fast forward 2 years and look at us now? I’m still tired and exhausted but for different reasons (thank gawd) I made it through to the other side. The doom and gloom only lasts for a little while, then it passes by, leaving everything washed clean and fresh.

As horrid as your cancer journey seems at the moment, just know, this too will pass. Your journey will continue to march forward. Some of you may lose your child, some may have complications that they have to live with the the rest of thier lives, but we move on, we survive, we conquer.

I sit back in my car seat and smile. No gloomy day can keep me down. I no longer cry in the rain. I now smile and jump in the puddles.

Don’t let the dark cloud consume you ladies, look for the silver lining, if there isn’t one? The cloud will move on, taking with it the cold and the rain and the wind, rainbows will follow, from heaven or from earth, our children are our blessings!

Loss

Let us Talk about Loss

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© Joseph Cortes
Early Walk © Joseph Cortes

When it comes to Cancer Kids, we must talk about the loss we all feel when we lose one. It hurts the whole community. I can only talk from an outsider’s point of view. Our son Griffin is still with us, but we have gone to a lot of funerals of his Cancer Buddies over the years. Yes, they are not my children, but it still hurts, almost like they ARE my kids. And I have a loss of innocence. I have survivors guilt. Why did my child live and theirs did not??? So I share with you my thoughts on child death:

Words of Advice From a Cancer Mama

When speaking to a recently grieved parent, please do not say things like, “It was his time”. We are talking about a child here. This was not his time. No parent should have to bury a child. A child that dies? Its not his time. Cancer stole his time…

Other things to avoid? Talk like, “God has a plan” or “God only gives you as much as you can handle”. When a parent loses a child, its a very trying time for them and they could be questioning their faith. Phrases like these do not help. I would HATE any God that did that too me, no matter the religion.

I know you are trying to relate, but please refrain from comparing a parent’s loss of a child to a dog or a Grandma. They are not the same. And it can hurt, a lot if you think that they are. This loss is a hole, their child has been ripped from them after a long hard journey. Be their safe place to fall, be a shoulder to cry on, be the supportive hand to hold. Do not be the jerk who thought that Fluffy’s passing was the same as a child. It can be insulting and hurtful.

Please DO ask if the parent would like to hear a story about your favourite moment with their child. (Some parents will not want to hear anything, others will love it, so its always best to ask) Tell a funny or touching story, how you will be remembering their child. Or tell them a story about what reminds you of their kid. Maybe every time you see a penny on the ground, or a cloud shaped like a dog, the colour lime green or whatever. It lets that parent know that you a are thinking of their child all the time and that they are still alive in your heart.

Do dedicate something for the family. A bench or tree in your favourite park, a song on the radio, anything to touch their hearts. I love to see people walking/raising money in honour of these little ones we have lost. The more money we can raise, the closer we will get to a cure. Let the family know what you are doing to honour their family.

Do listen to the parents. See what wording they are comfortable using when they are talking about their child. Some people do not like the word “loss”. To quote a Cancer Mama, “I did not ‘lose’ my child, I know exactly where he is! Right were cancer left him!” Some don’t like to refer to them as angels or their fight as a battle and they “lost” the fight. They tried their very hardest, saying they lost their fight makes them sound like losers! Some families refer to them in the present tense, others start talking in the past tense right away. So I would recommend listening closely to how the family is referring to the child and follow their lead. Every family is different, it can be very tricky but its worth it!

Sometimes there are no words…

Let that sink in for a minute.  No words. You being there, present, is words enough.  Sometimes silence is worth a thousand meaningless conversations.

Don’t be afraid to smile and even laugh. Yes, this is a horrid time. But its like a roller coaster, their world is crashing in around them, and then someone reminds you of a hilarious story about your cancer kid, you can’t help but to laugh right along.

Please don’t be silent, be vacant or disappear. They are still your friend or family. Don’t be afraid to reach out. Please call, take them for a walk, dip your feet in the sand together, connect, please cook food, please hold a hand or give a hug. Everyone needs a hug sometimes…

Please hug your babies tight tonight, even if they are just in your hearts.

XOX

Many thanks to the Cancer Mamas that helped me out on this one. I talked to some of you directly, and then some were just experience. But thank you for sharing your baby with me, even for just a little while. They will live forever in my heart…

A very special RIP to Kerry’s child (name withheld), Rowan, Austin, Matteo, Alivia and Kelsey.

Helpful Links

Helpful Cancer Links

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I HAD CANCER.com-is an amazing site for fighters, survivors and Care Givers to get together, ask questions and get support from others that “get it” from all around the world. Its an amazing resource for knowledge but also kinship. They also feature some of my blogs now and then! 🙂

OPACC-Ontario Parents Advocating for Children with Cancer

Canadian Cancer Society-Info, support services, Wheels of hope, screening and prevention, ways to volunteer

Camp Trillium-As we are a camp for children with cancer, our programs are tailored for all abilities whenever possible. We also have medical staff on the premises whenever camp is in session.

Ronald McDonald House-Hamilton-A home away from home for families with a child in the hospital.

Childhood Cancer Canada -Is an amazing resource! Check out their “Empower Packs” and scholarships and everything in-between!

Helpful Links

My Fav Charities

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www.aliviasrainbows.com

Alivia’s Rainbows does amazing work! They donate money directly to families battling childhood cancer in our community. This important service is a life saver to most cancer families and their hard work and dedication to the cause is unmatched. Chantal and Craig honour their daughter who we lost to Cancer. As well as helping families directly, they also give much needed toys and electronics to McMaster Children’s Hospital and The Ronald McDonald House Hamilton and Camp Trillium.

 

www.teamkelsey.ca

Team Kelsey is a whirlwind force of Lime Green that fights cancer at every turn! They are heavily involved in the community, raising money and donating to both  The Ronald McDonald House Hamilton and McMaster Children’s Hospital‘s Stem Cell Research. They honour their daughter Kelsey who we lost from a brain tumor.

 

www.jacewars.com

Jace Wars throws amazing “nerd” events that raise money in honour of their heroic little guy Jace who fought off a very serious brain tumor. All monies goes toward The Ronald McDonald House Hamilton.

www.boxrun.org

The Box Run is run by an amazing man named Mike Strange. He is a man larger than life, an Olympic Boxer, a City Counselor, a business owner and most importantly, a man intent of killing cancer! He ran across Canada, raising money and spreading awareness of Childhood Cancer. He now hosts an annual Box Run that helps out local Children with terminal illnesses!

www.foreverwe.org

ForeverWe.org is an amazing organization that sells dolls. You can get one for yourself, send one to a friend or sponsor one to a hospital or sick child! Their philosophy is to teach through dolls that encourage purposeful play. “Jewel” is the first in their line of special dolls. She has removable hair, a port and even a superhero cape if you want! These special dolls are given to cancer kids across the US and even here in Canada! There is also a cute book that explains the dolls. As a family, we found this doll was a great ice breaker to bring up Griffin’s Cancer diagnosis and how it has/is effecting him.

ForeverWe dolly
ForeverWe dolly

 

My Thoughts as a Cancer Mama

GET OVER CANCER!

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Just get over it!

Remember who you're fighting for... not just ourselves, but the next generation, and the next, and the next...Today I was asked why I wasn’t “over” cancer yet. I am not often speechless. But in this moment, I was absolutely at a loss for words. As I sat there with my mouth hanging open, a range of emotions flooded over me. Shock, horror, anger, self doubt, pity and then I settled on the good old “smile, nod and a walk away”.

This lady might have just been trying to make idle conversation? Or maybe she was actually wondering why I’m still obsessed with cancer? I don’t know. But what I do know? I WILL NEVER GET OVER IT! My son and my family and I, as well as thousands of children fought a war. A literal battle for his life! Call it PSTD, call it worry-wart mama, call it insanity, I don’t care. I will be talking about, advocating for and try to raise money for cancer forever. I will never ever stop. I will never get over it. I’ve lost my innocence. I know the facts, the numbers and the stats. I’ve watched babies wither up and die. I’ll seen the disease take thier hair, their mobility, their hearing, their limbs, their light…it is horrid. And I’m scarred from it. I will never, ever be the same. But instead of letting it consume me, instead of letting cancer win, I’m choosing to fight back. I’m choosing to stand up, to not accept one more child dying, not one more!

I’m sorry that as my friend, family, or co-worker, you cannot see, accept and/or understand that. I hope its because you have never had anything as scary and tragic as cancer in your life. You are lucky and nieve. Just like I was before Griffin got sick. I don’t blame you and I will not hold that against you. But if you are around me, you will be hearing about cancer. A lot. Quite possibly forever. lol So to answer your question, nope. I’m not “over” cancer. I never will be…

Hug your babies tight tonight…

My Thoughts as a Cancer Mama

How to “deal” with it

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 How to “deal” with it…

                                        …it being Cancer?

childhood cancerAhem, Attention, Attention please. I, Mama Emma will now share my secrets as to how to “deal” with Cancer…

Um, yeah, I have no idea.

hehehe, its probably the number one question I get asked. How I lived through my son getting sick, how my marriage didn’t fall apart, how I didn’t pull my hair out, how life went on. The truth is, you don’t have a choice! You HAVE to be strong! You cannot crumble into a million peices because your child is counting on you. I’m not going to lie, I certainly thought about never getting out of bed ever again. But you have to get up, no matter your circumstance.

A wise Auntie of mine told me an epic story, its been lost from my memory by now (I dont have a very good memory to begin with) But it was something about a kid that had to go to piano lessons, he was scared and unsure, the first couple of lessons, he would hide under the piano bench. The teacher would try to coax him out but there he sat, hiding. She just went on with the lesson with him under the bench. Eventually, the boy made it ON TOP of the bench and was able to learn his music. He realized he was good at it and only his only fear was holding him back. She told me this story and it really stuck with me. At the time I was quite depressed and everyday life was a struggle. So I started to judge my day like “this is an under the bench kinda day” or “Im on the bench, but holding on for dear life!” And best of all? I realized that even though the boy was hiding under the bench, he was learning, he was soaking in the lesson, getting to know the teacher and the music. An “under the bench” kinda day is not the end of the world, yeah, it sucks, but make the best of a crappy day and keep your ass on TOP of the bench! And also, that my own fear and worry was holding me back! I was missing out on some days that could be really amazing and for what? Worry? Guilt? Depression? No thanks…

Throughout Griffin’s journey with cancer, I had varying degrees of insomnia, but early on in his treatments were the worst! I would lie in bed and worry, I would go over the “what ifs” over and over in my head. I would also go over everything to do with his cancer care, all this meds (24 in all, all taken at different times, different doses, some with food, some with zero food, etc) to make sure I didn’t miss anything. Then I would go over the days and weeks to come, planning out food, what packing at to be done, organizing, all in my head. All i could think of was CANCER CANCER CANCER. When I did finally fall asleep, I would have horrid, life-like dreams and nightmares, most of which centred around cancer (I know, big surprise eh?) The worst one I would repeatedly have is, I would go in Griffin’s room while he was sleeping and take a melon baller (apparently that was hot) and carve out the tumour from his face. I could smell the flesh burning and feel the blood pouring over my hands. I would wake up suddenly and franticly, in a pool of sweat, and I would have to sneak into Griffin’s room to make sure I didn’t actually DO anything (We don’t even own a melon baller! LOL) Needless to say, after having a nightmare like that, it was VERY hard to go to sleep. Actually, I really didn’t WANT to go to sleep for fear that I would dream that again…

In truth, I wasn’t really dealing with “it” well, I was walking around like a stunned zombie. My doctor gave me sleeping pills as well as pills for stress and anxiety. But they just took the edge off, and I didn’t feel emotional at all, like either way, happy or sad. I just, was there. Then one day I realized, that I wasn’t enjoying my favourite song, normally I would have cranked up the radio, opened the sunroof and bopped along to my song. But there I was driving along, not caring. This was not me. I didn’t feel suicidal or anything, I just didn’t FEEL anything. I knew this wasn’t me and I knew I had to find someone to talk too. I reached out to the free therapy available through my work. I met with a man that wanted to deconstruct my childhood, he wanted to “get in my head” and see the true “meaning” of my issues. I was totally creeped out and RAN from his office! I was really really scared to go and see someone else. I waited a couple of weeks and then called again. This time I talked to “A” over the phone. The whole conversation was basically about her, she was a mother and wife, ran a laid back office and she gave me her website to see if I wanted to look her up and see if I felt comfortable talking to her! Well! This was EXACT opposite to the last dude I talked too. I walked into “A”s tiny little office, and sat on a fake leather couch, ikea-style. She was warm and smiling, blonde and tiny short. I instantly liked her. She started out the session just asking me why I was there. Well, that started the flood gates. I BLLLLLLLAAAAAHHHHHed my whole story out in out like a barf for an hour of a conversation. I couldn’t talk fast enough, going over the horror of the past couple of months. It felt SO good telling someone the whole truth, without sugar coating, or holding back to protect their feelings. It felt freeing. By the time I was done, SHE was in tears. Again, I was unfeeling, just telling my story. The first few visits was just me telling my story, going over facts and stuff, making sure I got it right. After awhile, I started to enjoy going to see her! I liked the feeling of bouncing things off of her, seeing her opinion of how to deal with a rude doctor, or an insurance company agent I wanted to strangle or whatever. She asked me one day what the beads were that I held in my hand. I never noticed that I did this, but apparently, i would fiddle with Griffin’s bravery beads (he gets a bead everything he gets a poke, needle, xray, mri, chemo, radaiation, etc) I was using them like prayer beads maybe? They kept me grounded and present in the conversation. Now, this therapist and I are no longer “seeing” each other but we do keep in touch through email and I update her on major events and stuff. She was an amazing part of my recovery. And I am ever so thankful for her!!!

So in closing…my advice to deal with it? I dunno, I just fumbled my way through it, which is probably what you have to do as well. I wish you good luck and remember to trust your gut and hug your babies tight tonight!

XOX

My Thoughts as a Cancer Mama

My Mum

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My Mum

My Mum, aka Grandma J, aka Janey.

Those that know her are better off just being in her presence. I’m totally serious! She somehow is able to calm both you and your steroid crazied child with a couple of words, a hug and manages to cut a single piece of paper into a chicken in 2 seconds flat. You can “pin” her a recipie that night, the next morning it will be waiting on your porch WARM from the oven. Her bed is always the perfect place to lay across the end of to chat, or in times of crisis, to snuggle up on the mound of pillows to cry and snuggle. She adopts the worst smelling dirty dogs from the pound and loves them to death! And we all snuggle in Grandma’s bed. (Ted is a grumpy old Cairn Terrier who is loyal and funny. Bruce is the newest addition, an Irish wolfhound cross that loves his people. He sit and leeeeeans into you, like I love you soooo much!) She listens to your worries and then comes up with solutions, but the best part? She makes your dreams comes true! I dreamed of giving back to the cancer community, she got a project off the ground of making “Garden Gazing Balls” that she sold to raise money for our favourite Cancer charity in our area. (http://www.aliviasrainbows.com/) These gazing balls are now legendary, and hard to get your hands on! Griffin is now healthy and in full swing, Grandma has very little time to make them anymore. Click here is see the article in the paper about Mum and her gazing balls: http://www.niagarafallsreview.ca/2012/08/15/gazing-balls-support-alivias-rainbows

Now when Griffin was sick, his weight would go up and down, during rough weeks, he would lose weight, then when he was on steroids, he would balloon up, becoming all puffy and outgrowing his clothes. It didn’t help that he was already a big boy (can I mention that he was 12lbs 2oz at birth? THREE WEEKS EARLY…yeah…I know…) and we struggled with the hospital supplied “prison” striped pajamas. If we did find a pair that fit, the button was broken or it was missing a tie. There is already enough embarrassing and undignified things about the hospital, having your PJs not do up was the last straw! Grandma Janey marched into the fabric store and got this great Cookie monster fabric. Bright blue and cookies all over it. She made several pairs, in varying different sizes depending on his needs. Then she added a pocket in the back to tuck the end of the feeding tube into, then added straps on the shoulders to keep the various tubes and IVs under control and to keep from tangling. We travelled everywhere in these jammies. To a different hospital for rads, down the MRI, to Chemo clinic. They soon became famous! Other mamas were “inquiring” how they could get thier hands on them for thier own children! We would get word that another child had relapsed, Grandma Janey would quick get on it and sew up a pair! The ladies at the cat scan could recognize them from a mile away. They are bright and cheery and gives the nurses something to talk to the child about. And I think its a way for my Mum to hug “her” chemo kids when she isn’t with them.

And now that project has evolved once again! She is now teaming up with Alivia’s rainbows! Now, when a child is referred to Alivia’s for help, they will also get a custom pair of Grammie Jammies and a cuddley quilt (donated by my Mum’s quilting buddies!) Its so wonderful to see my Mum’s ideas grow and flow out in the community! I love to randomly see a third party photo and SURPRISE! They are wearing Grammie Jammie! LOL AMAZING!

But most of all? I love that my mother LOVES my son as much as I do. I consider us blessed to have another set of parents for Griffin. And he loves them just as much. I love watching him play and goof around with Grandma. They have a blast together. Sometimes I struggle to figure out who is having more fun!

Things you may not know about my Mother:

1.She makes THE MOST AMAZING birthday cakes EVER! I have childhood memories filled with amazing birthday cakes, from the pirate treasure chest, to a toadstool to one with blue water “jello”…amazing…

2. She is a crier. Happy, sad, proud, excited, it doesn’t matter, she cries. And I’ll admit, I usually cry right along with her. Its like she has soooo much emotion, it leaks out. Talk about heart on your sleeve???

3. She reads the most gawd-awful romance/murder novels. You know the ones, the the hunky guy on the front and called Murder on the Midnight Train to Love. Or something equally dumb. As a book lover myself, I’m offended! I call these “fluff” novels. No real story or education to it, just mind numbing fluff. But i SOOOO I get it. She is such an intense person throughout the day, always on the move, always down at Griffin’s level, giving him her absolute attention, that by the end of the day, she just wants to kick back and read a “fluffy” book. She deserves it so I try not to make fun of her. Also, she knows that I read the whole Twilight series 86 times while I was on bedrest while I was pregnant. So really? Who am I to judge???

4. She is a baker. One of those, don’t follow a map, throw in whatever and it turns out wonderful, baker. Throughout our cancer journey, she would arrive at our house at 6am with a basket of fresh cheese scones for us to munch on while travelling to our early morning appts in Hamilton. At the time, I was having a lot of trouble eating, the stress was eating away at my belly, often I would just eat my Mommy scones and diet Fresca in a day. I’m now diabetic…Lord knows why…lol. She has made me dozens of cookies for bake exchanges so I can pass them off as my own (no one believed me though because they were so good, so I had to fess up) And at least twice a week she makes pies. Yes, it doesn’t matter if it the peak of summer, there is Mum in the kitchen, making one of her famous bumbleberry pies because the fruit is too ripe. My Hubby Marty is a sucker for her mystery bumbleberry pies. He says,  “You never know what is in there, but its always good!” She has the ability to “know” when you need a batch a cookies dropped in your mailbox, or tea biscuits left on your front porch. She bakes from the heart and so you can’t help but to feel loved!

5. She’s English. She was born there and came over to Canada when she was just small. If she is really really mad (usually at one of my brothers when we were small) or yelling at a dog, sometimes, just sometimes, her English accent comes out. It would make my brothers and I burst out in laughter. I’m sure it drove her nuts.  I’m not sure if she ever caught on while we were growing up, it was kinda our little secret pact as children. I haven’t heard it in years, but every now and then. when Ted pees on the carpet, the English Old Lady comes out, I can’t help but to smile…

One of my most favourite memories? We were at Camp Trillium (Cancer camp, which is an AMAZING place) http://camptrillium.com/ Griffin is in the middle of his cancer journey and we are recovering from CDIFF. He is worn out, I’m worn out and even Grandma is worn out. We laugh because all we did for the whole week was nap! LOL Anyway, on this particular day. Griffin was into Tigers! So Grandma being Grandma, she was on all fours, crawling along the floor (yes she does have tiger ears and a tail. And yes, she has worn them outside, like in public by mistake…HAHAHA) And they were wrestling on the camp cot, you know, like tigers do, and “somehow” Griffin’s feeding tube got pulled out. Off to the camp medical office we go. We decide that we are not going to put it back in, Griffin will have to struggle through the last couple of days of camp without it. Fast forward a couple of hours, we are back in the medical office, now his leg needle has “somehow” come out as well. With our heads hung low, we have to explain that a “tiger did it”. Griffin thought this was WAY too funny and giggled himself silly as we had to explain the story to the camp medical staff, the camp director, and also the nurses and doctors as we had to attend the hospital to get everything put back in!!! hahaha LOVE IT! Tiger wrestles is the best kind of wrestling! teehee!

Another great memory? My pregnancy with Griffin was not an easy one. And he spent five days in the NICU after he was born. There was a swine flu outbreak in the hospital so only my husband and I could go see him. I could tell that my Mum was DYING to  meet him but she had to wait. So for some reason I was really upset the night before and called my Mum crying (probably hormonal, after birth kinda stuff) but anyway, my Mum rushed up to the hospital in the morning, I remember she wasn’t as “put together” as she usually is. She rushed into the room, worried about me of course, and there was Mr Griffin waiting for her! He had been released and we kept it a secret so she would be surprised. I remember her tears, I remember the way they looked at each other, there was a special bond there.  He somehow got out of his swaddle and reached up and touched her cheek. We are talking a five day old baby here. It was a moment. A moment I will hold in my heart forever…

My Mum has always been there for me. From my crazy girl guide/scout schedule, to never deciding on a degree in University (Yes, I started 4 different degrees and only ever finished one…lol) She would listen to my long winded recountings of EVERY book I read, yes folks, I would sit on the end of her bed and TELL HER THE WHOLE BOOK…looking back on it, I don’t know how she put up with me! She has loved my husband as much as her own children since the day he stepped onto her porch. Most mother-in-laws and husbands don’t get along. My Hubby shows up at my parents house for dinner when I am not there, a lot. lol She supported my non-meat eating ways, making me special meals instead of mocking my choices. She never made me feel uncertain or self concious even though I’ve been a “big” girl my whole life. She instilled a sense of independence in me while keeping me feeling loved, which is a fine line to walk as a parent I think. Now, as a mother myself, I realize what a tough job raising a child is. And I now realize that I don’t thank her enough, tell her I love her enough or hug her enough. One of the wonderful things about cancer, is that it FORCES to stop and look around. You notice the people around you. And you are overwhelmingly greatful to them. Most children don’t know how wonderful thier parents are until they have passed on. Cancer has given me a chance to tell my Mum how great she is while she is still here instead of at her funeral. Another odd blessing cancer has given me…and for that, I am greatful.

So in closing, my Mum is amazing, not only to me, but also my Husband (she feeds him well) my son and every cancer kid we come in contact with. We are blessed to have her. And to her I say Thank You Mum, from the bottom of my heart…

Love Emmmie-loo-hoo