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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

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

Loss

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Loss

When talking about loss and cancer, together, one would assume we are talking about people, like actual physical people and their souls but I’d like to focus on another type of loss a Cancer Mama can meet along her journey with cancer. Friendships. Yup, its true, when you are in the worst battle of your life. You will be surprised at the people that just dissappear from your life!

At first I took this personally. but then, the more it happened and the more it happened to my fellow Cancer Mamas, the more we realized that it was a common issue! I no longer take it like an insult. People come in and out of our lives many different times, for different reasons. Who knows why but I would like them to know that the door is always open if they ever what to come back!

I tried to think up reasons. Of course, it could be me! I like to think that I have not changed, but that would be a lie. I HAVE changed! (I hope for the better!) I’ve lost my innocence for sure. I’ve faced my child’s mortality and of course pondered my own. I’ve buried chemo buddies, I’ve watched children waste away to nothing. I’ve watched cancer rip families apart, tear apart marriages and drain every cent a family has. I’ve watched child take medicine that poisions thier bodies to the point of death, meds that take thier hair, sight, hearing, mobility, and watched thier parents give it to them. I’ve put on a lead bib as my baby gets radiated, over and over and over again. I’m not the same person. I’ve seen the dark side of life. But because I’ve seen the dark side, I hang on tight the bright! I don’t take my life and my family for granted. I love my friends and family even deeper now. I see the good in people and the amazing organizations that helped us. I love watching kids kick cancer’s butt and watch them walk out of that hospital a victor. There is a new normal for me. And maybe some of my friends cannot handle this change. Is that my fault? Nope. Is it my friends fault? Certainly not. I just have a different focus, I’m on a different path and sometimes friendships cannot follow along. And thats okay. It is a hard reality to accept and that’s okay too.

Cancer is intense. Like seriously intense. Some people cannot handle that. I think a few of my friends just couldn’t handle the stress of cancer. Even though it wasn’t thier child, it wasn’t thier family, it still hurt just like it was. They had to put walls up. We all have these walls, in order to protect our hearts, but we all have different levels and strengths to our walls. Some can let me in, with my cancer baggage and all. But other people already have had assualts on thier heart, thier walls are a little shakey and already crumbling, there are hastily stacking brick on brick thying to keep it together. The added weight of a sick child on top of that? Would cause the walls to break down, that person to break down…and there for, we are no longer speaking. It does hurt me that I’ve lost friends. Of course it does. It takes notches out of my armour. But just like a knight going into battle, I still wear their ribbon daily. I hang onto the good memories and the wonderful advice, laughter and friendship they have given me over the years. They need time to regroup, time to build up thier heart and soul til it is strong again. I will be here when they do. (I hope a certain person reads this, because yes, some of this is about you. Life has given us shitty paths to take, not even a choise on our parts, just the cards we were dealt. I wouldn’t mind playing poker again…my chips are all-in)

Aaaaand I talk about cancer…a lot. I’ve been told that it can be “negative”. Take it as you will, but I’m getting the word out. Its on my facebook, twitter and pinterest, EVERY SINGLE DAY. I would imagine it can get a little “much” for people. But there is never enough for me… I talk about it alllll the time. I’m making it my mission to find a cure and raise awareness. I’m not focused only on the doom and gloom, I’m fundraising and going to events, I’m dropping off donations, I’m visiting cancer kids…I’m busy. I don’t have time to dwell on what used to be. And I’m not going to apologize or even feel sad for the friendships I have lost. They were part of my story, they made me stronger and better then before I knew them. And for that I thank them. I will love them til the end of my days. But quite frankly, i don’t have time to worry about the past, or who is talking to who. I’m moving on, I’m rising up, I’m kicking ass. If you want to join me, hop on board! If you’re not, thats okay, maybe i’ll see ya on my way back around!

YeeHaw!

My Thoughts as a Cancer Mama

The Blessings of Cancer

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Blessings of Cancer

Whhhhhhhhaaaaaat? You say? BLESSINGS of Cancer? What are you taking about???

Welllll, for me, and my story, as much as I HATE Cancer, I also love it. I know, take a deep breath, let me explain.

Before Cancer, I took life for granted, yes I was happy, but I didn’t really LOOK at what I had. My beautiful little family, amazing friends, supportive family and employer. I had my dream house, family living close, my best friend as my Husband, I was done school and just coasting through life. Cancer hit and threw everything into a tailspin. Now, that I’m on the other side, I appricate all that I have. I take nothing for granted. Life seems sweeter somehow. Music is more meaningful, a hug is emotional, a night in on the couch with my hubby is bliss! I laugh more, I smile at all that is beautiful. Once your life is ripped for you and you work HARD to but the pieces back together, you savour every moment you’ve got left.

Throughout our Cancer journey we have met up with some amazing people. We have attached ourselves to a couple of other cancer families. These families I care for like they are as close as family. I love to hear updates about how thier kids are doing and despite our busy sch’s, we meet up several times a year. The first family is of Miss S (privacy) She is Griffin’s girlfriend. She is a year older and had lukemia. They met in chemo clinic. She is the sweetest, cutest, sassiest girl you can meet! She bosses Griffin around, and Griffin totally does waht she says! LOL They hold hands and love the swings and compares snacks. Miss S only ate potatoes for a year. She has moved onto include bacon as well. Her mother is thrilled. Speaking of her Mother, We will called her Amanda (not her real name) is the most caring, most compassionate woman I have EVER met! We tend to gab for hours upon hours, we have cried together and laughed together and most of all, raised toddlers who kicked cancer’s butt together. One time, we invited Miss S and Amanda over for an afteroon playdate, Amanda and I yakked all afternoon and into the evening, The kids played with each other and my Mum was busy cutting out letters and numbers and chickens out of paper. Miss S was very impressed she was able to do this. My Dad ended up ordering from a chicken place to feed us and we kept on chatting! They ended up leaving at bedtime as our children were starting to fall asleep! LOL We invite this family to pretty much everything we do because an outing with Miss S is like a day without sunshine! LOL I value my friendship with Amanda and love being able to talk to her about life, but also about Cancer. She parents a lot like we do so we seem to be on the same page regarding our children as well as cancer. They are a great family. We are blassed to have met them and bonded over our clinic times!

Next is Mr Adam (name changed) he is a teenaged boy. Griffin first encountered him in the open chemo clinic. There is a “teenager” area of our clinic where the same children are not supposed to roam. Well, tell at 2 year old that, it just makes them want to go there more. Usually we were there very early in the morning so as you can imagine, the teens were sleepy, grumpy and feeling like crap. Adam stood out because he actually looked you in the eye and smiled when Griffin would come near him! Griffin would come up behind Adam’s Chair and stick his head in between the 2 seats to see waht kind of eletronics Adam had this week. Well, then, one week, Adam was our roommate on the hospital ward. Adam was NOT feeling well, At all. For the the entire week stay, he was throwing up every couple of minutes. You would hear Blahhhhh (him puking) and then a very weak but polite, “excuse me” from behind the curtain. Then a mintues minutes later another Blahhhhh and then Adam would pipe up with a “sorry!” Oh my gawd, I would laugh my head off! What a sweet boy! He is throwing up a storm and he bothers to excuse himself? What a champ! So from then on, he was our “favourite” room mate for being so polite and cute! So Griffin and Adam had a cute little relationship from then on. On Griffin’s last in hospital chemo treatment, we were in a private room and Adam was beside us, he was too weak to get up but he wrote a note for griffin on a piece of paper for his Mum to write a saying on Griffin’s “congrats” poster on Griffin’s door. I’ll have to dig it out because its the most amazing quote ever…I will have to find it! Adam’s mother is an amazing example of Cancer mama WARRIOR! And an amazing woman in general. I love yakking to her too! Adam is such a sweet boy, he finished his treatments and sent Griffin a Xmas package last year that included one of those story books where you can record your voice so now Griffin has Adam reading him the sweetest little christmas book. It brings a tear to my eye everytime. Adam has recently relapsed with his cancer and is in the process of getting a bone marrow transplant from his brother. Our hearts and thoughts are with this family right now!

Next is Miss M, another chemo clinic buddy! Miss M and Griffin became buddies over thier mutual need for food during a steroid week. Griffin would steal her strawberries, Miss M would steal his crackers. They were buddies ever since! Again, from a wonderful family who we really enjoy doing stuff with. Miss M is usually the life of the Party, wearing a tutu and sparkley shoes pretty much at all times and loves to DANCE! Her hair has started to grow back (she is still in treatment) which makes her have this wild child look that totally suites her personality! She lives over an hour away but you can count on Miss M’s family showing up for events which are always fun!

Through facebook and emails, us Cancer Mamas (as I call us) have formed quite a pwerful and wonderful group that can reach out and rant or ask for help or a tip for a problem. Its actually quite amazing!!! I look to these Mamas for thier wisdom but also thier friendship. I actually cannot imagine my life without these people now. And I thank Cancer for bringing us together.

Throughout Griffin’s journey, we have come in contact with some really great stangers that became vital to our Cancer Fight! Linda (name changed) lost her husband to cancer years ago and her son had it too and now she works hard for the Canadian Cancer Society’s Relay For Life every year. We actually met her there. Griffin was still battling his cancer and I was crying on the side of the road. Linda picked me up and gave me a hug. And just held me for awhile…like my angel! She met us with us a couple of months later with gifts and cash and more hugs. She and her children are a blast, such a caring group of people! We are planning to get to gether soon to go to the aquarium with the kids! YAY! But she is an awesome example of someone whose life was ripped apart by cancer and instead of letting it ruin her, she stands tall, and fights everyday for a cure. She is my hero.

Within a week of Griffin’s diagnosis, a friend at work was very active about reaching out to community help for us. She was concerned abotu the cost of cancer. At the time I was very overwhelmed and totally did not pay attention to what she was saying (sorry J!) But thanks to her stubborness and plain old stepping over my head, she got in contact with Alivia’s Rainbows which is a FAB foundation her in Niagara Falls that directly supports cancer families with things that they need. They had lost thier daughter Alivia to cancer a couple of years before and this is how they honour thier daughters memory! How wonderful is that??? They came over one night, right before Xmas and dropped off SEVERAL gift cards for food and gas. I cried and cried. These people understood! And they were the first “cancer family” that we had come in contact with! I was desprete for information so it was wonderful to get the “inside scoop” and another cancer families input. I think they were surprised that I wanted to talk to them since they lost thier daughter, but I didn’t care, I was so glad to speak to them! Chantal & Craig have been amazing friends and our idols to look up to on our journey through cancer. One day I want to grow up to be like them! Strong, caring and amazing!!! They continued to support us on many levels. And we are now working hard to support thier cause! We will never be able to repay everything they gave to us, because its priceless but we try! Please check them out at www.aliviasrainbows.com/

Another amazing Cancer Family we came across was the crazy people at “Team Kelsey” Kelsey Hill lost her battle with a brain tumour and her supporters, all dressed in the brightest green you have EVER seen group together and move mountains! Her Mum Lana (and family) are very active in the cancer community, they raise money for the Ronald McDonald House and sponser Brain Tumour Kids in our community. Lana reaches out and touches each kid with her love and care and you can’t help but to desire to be part of Team Kelsey! Check them out at: http://www.teamkelsey.ca/

So in short, yes cancer sucks, but you can either let it consume you, or you can fight back!!! Don’t just sit in the corner and feel sorry for yourself, get up, talk to the people in clinic with you,