Wednesday, 9 December 2015

Feeding the fire

Buried deep within my soul is a fire. It burns slowly; smouldering inside me day after day.
I long for the day when this fire rages again. Like it used to before I smothered it with life.

Before kids, before mortgages, bills, illnesses and medical interventions, there was something else on my mind. It was fuelled by almost everything around me and grew stronger with every use.

This was something that took me through dark spiralling tunnels, across cobalt blue seas with purple monkeys swimming and up mossy green mountains that whispered cool breezes. It sparked all my  senses and tugged at my heart. It sent shivers down my spine and excitement in my belly.

And sometimes it paid.

My creativity was ignited by an imagination as unique as every snowflake that falls. The words came to me, the stories flowed and the imagery made sense. I created eloquent editorial and powerful prose.

But somehow along the way I lost my creative spirit. I pushed it away. I pushed it down. I pushed deep inside me.  I stopped using my gift, whether it be for lack of time, energy or age. I miss those days when I could clear my mind and let the creative juices flow as they say. It came easily, naturally.

It came quickly.

Now I struggle. My fingers no longer glide across the keys as I feverishly type a masterpiece spilling out of my head faster than my fingers can keep up. When I sit down to write, I just sit. I listen to the clink of the ice in my glass, the hum of the dishwasher and buzz of the muted TV. My mind is numb, my imagination dormant. My creativity is dull.

But I know the fire is still there, albeit more a smokey fog than a brilliant blaze right now. With a little practice and a little less stress, I hope to feed the fire again!


Thursday, 3 December 2015

#GivingTuesday




On December 1, Mackenzie and Xavier gave back to McMaster Hospital. After collecting money from family and friends, Mackenzie and Maria from ChildLife handed out MacKids plush toy Finnegan the Fox to the children on the cancer ward (3Y) at McMaster Children's Hospital. Xavier then presented his doctors and other helpers in the Neuroncology Clinic (3F) with a Christmas plant and card to say Thank You for providing him the best care!

I am so proud of them for their kind hearts!

Wednesday, 25 November 2015

Survival Strategies

I often get asked: How do you do it?

How do I manage to stay calm when everything around me is uncertain; keep my head on my shoulders and maintain the best "normal"our family can have amongst all of the struggles...

The simple answer is I just do what I have to do. It is during those most difficult times when you just find the strength you never even knew you had.

But there are really four key strategies I use to stay calm, stay sane and positive throughout this journey:

1. I pray.
2. I learn just enough.
3. I check-in with myself regularly.
4. I live life.

Let's break those down (and I strongly encourage anyone to follow these strategies because life is hard no matter what)

1. I pray every day that God takes my fears in exchange for strength.  I pray that He brings comfort to my children and will soothe our aching hearts. And I never forget to thank Him for the blessed life he has given me.

2. I learn and educate myself about what treatments my son will receive and the side effects. I read about his type of cancer and about his emotional well-being. But I don't read too much. I don't get obsessed with statistics and long lists of what ifs. I learn just what I need to know to feel comfortable about making safe decisions surrounding his plan of care.

3. I check-in and attune to my own thoughts and feelings. I ask myself: Am I doing ok? And I answer myself honestly. If I catch myself becoming overwhelmed, I stop and prioritize. I listen to my needs and have discovered ways to help myself during those 'down' times. Writing here is a great tool to check-in and decompress. I never really know what my fingers will type as I sometimes just let the thoughts flow without a filter.

4. I live life and refuse to let the uncertain future prevent me from enjoying today. I still go out for supper and/or drinks with friends. I empathize with my mom group about the daily struggles of parenthood like picky eaters and snotty-nosed kids that won't get to bed. I make time to visit family. Sometimes my kids need me home more than others, but I try to keep a healthy balance of enjoying what I love outside of the home as much as I do at home.

Overall, I don't wait for others to make me happy, or to make things better - I do it myself. I am full of love that pushes me harder and farther than any other emotion ever could.

Friday, 20 November 2015

A new direction

Life takes you on some unexpected turns and you never know where it will go. But the most important thing is to keep focused on looking forward.

Again today I find myself full of bittersweet emotions as I leave my job to focus more on my family. It seems like a no-brainer, but it has been a difficult decision - and not the first time I have done this.

Back in 2010 after Xavier's diagnosis and first round of treatment, I returned to my job as a reporter with the local newspaper. It didn't take me long to realize the stress of the job, the deadlines and the politics, was not worth the anxiety it carried with me at home. I still struggled to pull the plug and hand in my resignation, but after I did, it was a huge relief. I could be there for my kids and I could take care of me.

Life eventually settled and I accepted the past for what it was ... 

Five years later, I rebuilt a new career because working (for the money and my own self-confidence) has always been important to me. For as long as I can remember, what I did was who I was. So if I did nothing (no job, no career) than I was no one.

Now I have decided once again to leave this career behind in order to provide the much-needed support my family needs, including myself.  Xavier's relapse and ongoing care to both him and his sister has opened my eyes to the fact that I am EVERYTHING to my children. Of course this won't always be the case, but I want to take advantage of it while I can -- and do the best job in the world: being a mom. 

I am living my life, but focused on a different direction than I had originally seen myself doing. I didn't end up back in this place, making this decision again for no reason. It's because I am meant to do this.

Don't get my wrong, I am scared as hell! But I am doing it afraid because in my heart I know it is the right thing to do.

I have learned more from being a mom than I have in any  other job I have had. Not only did I get schooled in nursing through Xavier's cancer, but I am training to be a psychologist too! It is a challenge every day and demands my full attention.

And in the end, I know that the hard work will pay off for myself, my kids and my husband. And I am incredibly thankful that I have the opportunity to do this.

We all have ideas of how our life should be, and what we expect should be important to us. At the same time, we all know life on Earth is not permanent and at any moment, any one of us could be called to a better place. And for some of us like me, it takes a concrete example, like  my son's incurable brain cancer, to give us that kick in the ass to go against how we "think" it should be and just do what "it" is.

My "it" right now is to be a full-time Mom.

Who knows where life will go in the next while, but I am prepared to keep moving forward.

Monday, 16 November 2015

The dragon in his head

As far as my son knows, there was a dragon in his head.
This dragon was big and scary and made him feel sick.
But as far as my son knows, we stomped that dragon out.

The idea of Xavier's cancerous tumour being a dragon in his head came from a movie that had been given to me by another mom of childhood cancer. Paul and The Dragon is a powerful 20-minute video of a young boy with cancer. Although it is generic (not about brain tumours), and there are no words, it is incredibly telling. For any family who has been through a similar experience, you will instantly connect with this boy and his family.

And for my kids, who are very young and don't exactly understand medical terminology, the story is easy to understand and has provided a great foundation for how to talk to them about Xavier's journey with cancer.

The movie was so popular among my kids that it became part of our regular Friday night movie rotation. My son even requested it while he was in the hospital again in June.

It has now become a trigger for me... I know he is worrying or feeling some strong emotion connected to his traumatic experience when he asks to watch Paul and The Dragon. It's his way of opening the dialogue between us and an opportunity for me to calm his fears.

My son doesn't understand what incurable means. And to him, the dragon in his head is gone... for now. We explained to him that doctors needed to go in and take the dragon out. When surgery did not go as well as expected (only part of the tumour could safely be removed) we told him they got most of the dragon except his tail. During radiation, we used the dragon again. An special invisible beam of light was going to be shone into his head and break the dragon's tail up into tiny little pieces so it couldn't bother him.

These explanations seemed to satisfy his inquiring mind and made it not so scary for myself as well. He knows the dragon could come back. But we don't talk about that. Right now, we tell him we stomped on that dragon!

Saturday, 14 November 2015

First round of cancer treatment

Link to my initial blog: http://mackandx.blogspot.ca/

I started this blog initially to document life as a mom of twins, but even before a full year adjusting to two at once, our young family received the devastating news that one twin had an aggressive brain tumour.

My last entry:

"It was the best news we could possibly get. While what we want to hear is that he is cured, we know that is not a reality. However, today's news puts us a little closer to hearing that.
Given the aggressiveness of his cancer and its past behaviour off treatment, doctors were impressed with the MRI results and his progress thus far.
...When I find myself thinking negatively, I find strength in these statements. I say them with conviction and believe them.
This journey is not over, but I am celebrating today.
- 2011

Wednesday, 11 November 2015

Brain Tumour Awareness

One boy's tragedy, is another boy's hope

I want to say thank you to Evan Leversage and his family. 
As I write this, Evan is in palliative care with an inoperable brain tumour and his family preparing to say good-bye. 

But last month, a community, a region and a nation came together to bring one last Christmas to this amazing 7-year-old boy in his hometown of St. George, ON. 

His story has gripped the hearts of millions of people, and renewed faith in humanity. But Evan has also brought our family an early Christmas gift.

Evan has given us hope. His story has attracted media attention from networks across the province and with it bringing to light the much-needed awareness of paediatric brain tumours. 

This little boy's wish, his journey and his smile have ignited a flurry of media reports and the reality that more needs to be done to treat and cure brain tumours in our children. 

Because of that attention, I have hope the momentum will continue and attract more research dollars, more clinical trials and someday a cure. 

I have hope someday, sooner than later, my son and all the other children with brain cancer will benefit from a discovery. Someday, sooner than later, childhood cancer will be as talked about as much as breast cancer.

Who knew a boy and his last Christmas could mean so much to so many. His cause in the spotlight could be the start of something big! 

For being the second most diagnosed type of childhood cancer, treatment lags behind others. Survival rates for the No. 1 diagnosed childhood cancer - Leukemia - have significantly improved. Now, more than 90 per cent of children are cured, according to St. Jude Children's Research Hospital.

But there are still no cures for many brain cancers. Only invasive treatment options with high risks and severe long-term effects are available. Five-year survival rates for my son's cancer have not improved in years. Still a quarter of every child diagnosed with anaplastic ependymoma dies within five years of diagnosis.

I know better treatments, a cure are out there, we just need to give this cause the attention it deserves!

My thoughts are with the Leverage's tonight and I pray that God gives them the strength they need during this difficult time.

http://www.braintumour.ca/5528/evans-legacy

Thursday, 5 November 2015

Open wounds

I respect everyone who wants to help our family and offer some advice on how to help in our current situation, but I am frustrated because most people just don't understand the complexity of the issues.
I am so tired of hearing, in some form of another, just make them suck it up!
My children are behaving normally for a 3-4 year old. They are 6. Their behaviour is associated with many internal hurts, trauma from our experience of having a child with cancer. Yes, someday things will have to be different. But just a few short months ago our lives were turned upside down again.

Look at it this way... if your child got hit my a car and had a gushing open wound to the head or leg, would you just tell them to suck it up?? Of course not. You would need to seek medical treatment ASAP and have them treat the wound so it can heal properly followed by proper physio therapy.

Well my kids have a big open wounds in their hearts right now. If we leave it and just make them suck it up then the prognosis is poor, just like the poor kid with a physical injury. We are seeking treatment and we must give them time to heal before making them "run" again to prevent further damage.

Baby steps. Not just throw them into a big situation we know they do not have the tools to deal. Like putting your child with a healing leg that was broken into a race. Start with walking.

Dealing with emotional issues is challenging because it is not a physical thing you or anyone can see. Progress is hard to determine and knowing when to push is hard to judge. It is a process, and likely, a much longer process than that of a physical injury.

We must be patient and sensitive to their situation. And I like to think as a well connected parent, I will know when its real or manipulative behaviour. Right now, I feel their suffering. I am still suffering and I am an adult. So yes, we are dealing with things differently and giving them more choice than ordinarily. But right now tough and stressful situations normal for most kids become monstrous and overwhelming to mine. It's a BIG deal.

And in the end, if my failure as a parent is because I was too giving, too nice and too loving to my children, then so be it!

Monday, 24 August 2015

Excuse my children's extreme behaviour

Many thoughts are consuming me tonight after the emotional turmoil our family endured today on this first MRI since Xavier's treatment ended. 

I have learned a lot on this journey (an much more to learn) through therapy and continuously reading and researching. And if there is a positive in this nightmare, it's that I am becoming the best I can be - a better person as we continue this difficult path.

One thing I have learned is that grief is not something you only experience from the loss of a physical being. Grief can be experienced in many situations including the loss of an expectation that will never be. We are grieving. We are grieving that normal life we anticipated. Our reality will never be what we expected nor will it be like any others. Our lives, and us as individuals have been shaped and grown in many ways from our experience. But for this we must also grieve. 

In time we have to reach acceptance that our lives are different, our fears are different and our children are different. 

In thinking about this, I also thought about our role as parents. We have an abnormal situation, children who have suffered beyond their ability to cope and yet we have tried to parent them as if they were kids who have never experienced trauma. Why... denial because we have yet to complete the cycle of grief. 

It is a struggle to accept, but we are learning how to best support our family and what kind of parents we want to be. 

The first step is to throw out the strategies we are accustomed to from our own childhoods. They do not work nor are they "our" family's approach. WE must develop a new parenting style: The Mark and Carla way of parenting Mackenzie and Xavier. It is essential to our healing and specific to our needs. 

My promise as a parent:

1. The Inside Out Strategy
I will address my child's emotional needs before their outward behaviour (unless their safety is in immediate danger). I will focus not on what the behaviour is but first the why. The what can be addressed after the situation has been diffused and we are calm and ready to listen. The emotional state is not an excuse for bad behaviour, but it cannot be adequately addressed (long-term) without connecting with the emotional cause. Heal the inside and then the out. 

2. Nature vs Nurture
I will nurture my child's heart and be attuned to and validate each and every one of their feelings; good bad or ugly. I will tell them it's ok to feel whatever they are feeling. 

3. Guiding Principle
I will empower my child to make the right choice by encouraging them to think independently. I will guide them with praise and model appropriate behaviour. I will NOT be authoritative or manipulative to achieve compliance. 

4. In all Respect
I will respect my child and respond to their needs without judgement. I will appreciate that I am the adult in the relationship and any expectations I may have as to how a 6 yr old or 7 yr old etc. ought to act, are irrelevant. 

(Our kids may be 6 in age, but their emotional maturity has been stunted by the trauma.) 

It's not an easy road, especially when your own emotional state is still healing from past scars. And we will slip up. But together our family will become stronger than ever!

Monday, 13 July 2015

Back to kindergarten

Today was tough.
Today was my first day back to work after spending the last 2.5 months caring for my most prized possessions: my children. But now after another devastating round with cancer, it's time for our family to try to find our new normal again. But it's hard. We never had "normal". I guess it's our own definition of normal, just like each and every other family out there. 

But today was tough. 
Today I had to walk away from my children's tears and go back to what was routine before April 30th happened. My heart sank and my own eyes welled as I drove away waving like a panicked swimmer in shark-ridden waters. It was the first day of kindergarten for us all over again. 

Except today was tougher. 
Today my children were still suffering from the scars left from a month of unusual terminology, strange places and people who cut other people open but are called heroes for doing so. A confusing time for two six-year-olds. It was unlike the two children I left at school two years ago - two kids with aspiring minds, busy hands and no worry.

Today was tough. 
I know my kids have had to grow up way too fast with the situation we have been given. They have learned far too early about worry, about fear and about death. But at the same time they have gained immense strength with their knowledge and an appreciation for things far beyond a regular six-year-old. The lessons they have learned I hope will carry them far into the future. 

Tomorrow will be better. 
As we settle back into our normal routines, so too will all of our emotions. With a little extra tender loving care each day, the pain shall pass. Our memory will fade. And our hearts will heal. 

Tomorrow is better. 
With each passing day, it is another victory. It is another day Xavier has survived cancer and another day we have had to make happy memories. It's no use to stay in the past or look too far into the future without coming back to the present. To appreciate every day you have. These experiences, as terrible as they are and as unfair as them seem, are an eye opener. A second chance at making life the way it should be - refocuses me on what's really important. Everyone should have an opportunity to re-evaluate how you live your life; are you doing what you want, are you still following your goals and on track with the person you wanted to become? And I don't mean the big house you have or the nice sports car in the garage; it's deeper. Are you happy inside? 

Today was rough, but tomorrow is better. 


Sunday, 5 July 2015

A loss for words...

I am a writer. But I am at a loss for words
This journey has filled me with emotion
trapped inside, not yet able to escape

There have been glimpses of the flood ahead
A trickle through the cracks
But the gates have not opened

I cannot find words for what haunts me inside
This journey has been lived once before
and will again, not an end in sight

There have been glimpses of the flood ahead
A trickle through the cracks
But the gates have not opened

Forever will I fear the unspoken words
This journey has brought upon our lives
in every day, not a rest to be had

Until the gates open

There is hope in the flood.
A current so strong
all fear washed away
This journey has a purpose
A plan so perfect not yet able to comprehend









Tuesday, 31 March 2015

A PR Project on Life

Find your daily dose of positivity 

Ever have days when you just can't watch or read any more news; when you have to turn the channel from that reality crime show or stop scrolling through your Twitter feed.

You know those days when your own life is so overwhelming that consuming any more negativity in the world makes you sick to your stomach.

For anyone who has had days like this, I want to help by giving you a place to come for a "good" read. For the next month, any blog entry, Facebook post or tweet will be positive. Consider it my personal "Chicken Soup" style blog.

My pledge:

No matter what happens in my life in the next 30 days, I will turn it into a positive.

I will only share positive news stories.

Sometimes I think it's OK to shut out the horrible things going on around us - for the sake of our mental health. We shouldn't be oblivious, but we also shouldn't endure the world's pain on a regular basis.

As I was researching for future positive posts, I found that everywhere I go the information I consume is negative. Bad news is always in our face, but we actually have to go searching for the good news.

Case Study #1: March 31, 2015
The facts

  • Xavier had 2 appointments at McMaster today
  • Doctor 1 told him his eyesight is not improving in his right eye 
  • He is to wear an eye patch 5 hours every day 
  • By age 8 if is his vision has not improved, he will never regain his vision in that eye
  • Doctor 2 told him he has minor hearing loss in right side
  • Cause could be blockage, nerve damage or both
  • More appointments scheduled 
Without my positivity lens, as I will call it, this sucks! But with a PR spin, I read between the lines and this is what I find:
  • His left eye is perfect
  • He still has more than half a day when he doesn't have to wear the eye patch
  • If he wears his patch, there is a good chance his vision will improve by age 8 
  • His hearing is perfect on his left side
  • The hearing loss may not be temporary
  • Doctors want to take care of him 
See the difference!