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Archives for April 2018

Why not?

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Sitting on a train, this time so different. I am not heading to Sick Kids (well not really) I am not lugging a wheel chair and feeding pump and meds. I am not sitting with a sick child sleeping on my lap. I have myself and headphones. I am smiling, I feel worry free, I feel happy, am I allowed to feel like this?
I am watching people, wondering where they are going. To work, see friends, family, sporting events, hospitals? They all look pretty normal whatever that means.
I picked up a hitch hiker on way to train station, everyday he hitchhikes to smith falls to methadone clinic. He lives in motel his girlfriend has a 16 year old son but mind of a 5 year old. “Stay strong man good luck” and he gets out of the car.
New parking system at train station, more talk with strangers. “Oh we have to pay to park now” “when did they put this in” everyone says the same thing as they come into the small train station room, causing laughter. everyone seems happy and cheery. Small chit chat about this new device. Can I help you I ask as a elderly lady struggle with the touch screen. Oh thank you dear” it feels good to have such simple conversations with strangers. Is this what the world is like, is this normal?
Am I starving to be apart of this world that does not include puke bowls and weigh ins and medical talk? Do I look normal? Do they look at me and see a sick kid mom? Broken and shattered. This feeling of normal is scary. I feel guilt. I need to hold on or I will blow away like a balloon getting lost up in the sky.
Yesterday I had a good friend invited me to Toronto for the weekend. At first all these thoughts ran through my head, I should not go, what would I do otherwise? Every 11 days I get a small piece of time. If I have learnt anything from this experience life is short and unpredictable…. why not? It is a crazy feeling to want to experience so much all at one time. With the boys, for myself. Everything feels like snippet of time that I have to grip, memorizing the details, the colours the smells the sounds. Is this a normal feeling? I don’t know what the weekend will hold but right now I am enjoying every second and I have not even got off the train yet! Adventure awaits…

 

Merry-Go-Round

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Air raid from every angle, battlefield on all sides
It seems attacks are on, everything that my heart finds.
A heart once full of sunshine, rainbows and innocence
Now holds together with duck tape, glue and a sad stitch.
My heart still beats with little cracks, pieces chipped and shattered
This merry-go-round of insanity, it just keeps going round and round
How many more stones must I carry, before I am totally drowned
I dream of a utopia, even a mirage in the desert will do
a drink of water please to cure the incurable thirst.
I wish I knew the destination, I wish I knew the master plan
I tell myself to take a breath, and try to place no blame
Do not look back, do not regret, this is the challenge here
I learn one more step, thats all that I need, then one more to build some strength
To carry on when all seems lost, and live each day with hope and grace

In the News

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This week has been trying in the news and has impacted me more then I can really explain. How can I feel such emotions for people I have never met? The news of Johnathan Pitre left me in sobbing tears as I pictured his mother by his hospital bed everyday and the familiarity just hit me way to hard; the loss after such a long hard fight, the fatigue of war.

Everyday the toll from #Broncos crash climbs and my heart bleeds for those family’s. The shock, no warning or time to prepare.

On social media I have been following a little girl, Holly, who after 3 years battling brain cancer stopped treatment and made it her mission to spread the message #happinessiseverywhere . I messaged her mother today thanking her for sharing her story and how much it has helped me.

I have replayed these situations in my head so many times with a million questions floating around. I think of all these stories and at first heartbreak and devastation poured out through tears but the more I thought about it the more it made me realize that these children and families have really left this world with a beautiful message. Their stories have been shared and have created a movement and not one of sadness but one on how precious this life is. A movement about helping others, having empathy, seeing happiness in the small things. This world and all these situations are hard to understand. The pain in this life is unbearable at times. I myself have gone through stages of bitterness and anger but I have also felt such love and seen amazing beauty. It has taught me that every day is truly a gift. Take every moment in like a deep inhale of air. Try to just be a good person with a pure heart. There is no crystal ball, no road map of what will happen next and sometimes you can plan and prepare all you want or sometimes a slap shot takes you by surprise but you have two choices: You can let the bad times over take you or you can rise up and let it make you a stronger person. I can guarantee you the more you focus on the positives the more you will see there is more sunshine then darkness in this world.

Time

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Growing up I felt like I had all the time in the world. I was carefree and invincible. I believed in infinite possibilities. My friends and I would make up dances on the beach, we would climb tress and make forts. We jumped out of barns onto piles of hay or snow boarded down the roofs into piles of snow. We had mud fights in cow plop fields. We dreamed big and played hard. Time passed a bit more and my friends and I would stay up all night playing poker and listening to Steve Miller band. I remember my first dance and going on my first date all awkward and nervous. Summers were filled with serving jobs and boating on the big Rideau. I went off to University for visual arts, against the better judgement of my parents, because as a teenager you think they know nothing. After a year I did not see a career in painting and drawing nude people but once again I had all this Time in the world. Now I look back onto my childhood and teenage years and I see how precious all these moments were and how lucky I was to be able to grow up so free and healthy.

Everyday I look at Aiden and see all that he is missing out on and it is not fair and it is not right. I feel so powerless to give him all these memories and a chance to grow up so free. He should be running around catching frogs, He should be having slumber parties with friends and someday fall in love and kiss his first girl. and I think of all these things, all this time that has already been taking away from us and is being taken away from us. I look over our voyage so far and we have been able to do so many amazing things, Our trip to Disney, meeting the Ottawa Senators, taking Aiden to his first concert, and as precious as these memories are they too are getting harder. I don’t want to cram a lifetime into a unknown timeframe and windows of good days. I would trade all of these amazing experiences for just more time but it something you can not buy or beg for.

I am trying to process this situation and look for the positives and meaning in all this but everyday it just gets harder and harder. The one thing that does help is seeing how many people truly care and love us. I see my community and friends come together in fundraising and reaching out to support us any way they can and I am so truly grateful. Like they say “no one fight alone” and I truly feel we have an army of support. I have had a lot of people ask how Aiden is doing and for an update from His last MRI but it is getting harder and harder to answer as the reality of this awful disease set in. We have fought this once but unfortunate the winning was short-lived and the cancer is still growing. From the last MRI the doctors are unable to tell us if the chemotherapy is even slowing down the growth. You think you have all this time in this world until you find out you don’t.

We are trying to just live each day as normal as possible but this is anything but normal. We keep pushing on, keep fighting. Aiden has been going to school and I usually pick him up in the afternoon although as the fatigue kicks in harder I don’t know how long he will stay in school for. We are working out a better schedule to give him a couple hours to get away from the house and me and be around other kids. Generally Aiden is happy and jokes around, plays with his brothers and nightly cuddles with mom. Besides the standard effects of the chemotherapy, tired, no appetite and hair loss there is no other symptoms of growth from the outside looking in. The weekly trips for blood draws are getting harder and harder as Aiden is tired of being poked and proded and rightfully so.
We have Aiden on canabis oil and I have started taking him to reiki, I have spent endless hours on google looking for other trials, I have called the doctor we had in Boston trying to reach out for any other suggestions, I have asked about more radiation, stem cell, more chemo But unfortunately Cancer is a horrible sneaking, cruel and unforgiving time stealing monster. We will be adding another chemotherapy as Aiden starts another round next week with the hope that this may slow or stop the growth and we have another MRI booked for May. I can’t believe one of the number one childhood cancers out there, medulloblastoma, and the doctors can not offer us much of anything. I am angry and heartbroken and a mix of so much more I can not explain. The debate of quality of life vs time is continually on our mind as we just take it one day at a time. Thank you everyone for all your support and love and keep up your prayers.