The Book of Me

I am lost in my own world I am frightened The thoughts keep racing in my mind; lap after lap I am sad Gone is the world we had; life is different now God, is this what grief looks like? There is no turning back; only acceptance in our future Lost are our expectations; the picture of perfection we had I turn inwards in my pain I am mad This was not the way it was supposed to be; we tried Now we cry God, is this what mourning looks like? Trying to stay faithful, trusting in His plan I pray for miracles, of a life we used to have I am loved But love cannot take away what has already been done Love won’t fix it; the scars are deep   God, is this it?

We are on the road to recovery!  Physically, Xavier is improving daily with his regular physio and pure determination only a child possesses. He is learning to walk again and use his left side, all while building back the muscle he lost.  He has at least another month of treatment left, but we are so fortunate we can manage it at home and at a dose that causes fewer side effects than he faced last month.  Xavier is determined and I admire that in children. The lack of self-pity in kids we have seen  on his cancer ward are so inspiring. Instead they use that energy to heal, and set goals for recovery.   Still there are residual symptoms that are concerning. He is choking on liquids more frequently, suffering from reflux and is unable to move his toes on his left foot. Seems minor but as he tries to walk now his toes curl under his foot and trip him. Who knew how important straightening your toes are!  But the lingering side effect of treatment is always the emotional scars

Six weeks ago my husband and I were given news that would make any loving parent crumple up into a ball of despair.  Your child is dying.  On August 2 a trusted surgeon who has seen us through our seven-year battle with our son's cancer reluctantly gave us the news. His tumour had doubled in size within two months. The cancer was angry. The last round of radiation only fuelled its furry as it aggressively invaded Xavier's brain.  Our only option was surgery to temporarily relieve his symptoms as he would suffer a terrible death from brainstem deterioration.  Imagine having to digest this news as you sleep on a chair beside your ill child in hospital.  We spent the weekend in mourning.  By Monday his team of doctors, including his radiation oncologist, surprised us with another possibly theory.  The tumour may not be cancer at all. It may be a mass of decaying brain tissue severely damaged by radiosurgery.  Reluctant to believe this was the case

When your child leaves the hospital after a medical procedure, you expect them to be better. You have some confirmation or resolution to the problem and a followup.  This week when we left the hospital with our son Xavier, it was a completely different feel than usual. Being in hospital and having him undergo surgery is sadly old hat for our family. However, this time was different.  In the past, we had always left with a plan, some resolution -- with a fight against his cancer whether it was radiation to finish the job or to recover from a successful surgery.  This time is different. We have made a transition of care. We are no longer in attack mode. We have no arsenal left nor intelligence about our enemy.   When Xavier's surgeon said we were free to leave Friday, we were hesitant. In fact, we said no. We wanted to stay another night. There is so much uncertainty in his condition now, the hospital is strangely comfortable.  Perhaps it was our subconscious ta

Tomorrow is yet another anniversary in our life that we would rather not remember. On April 30, 2015 we were told Xavier's cancer was back. It hit me like a stray bullet. We were expecting news about a possible ventricle blockage, but did not even suspect the tumour. It was late in the day when JoAnn, our clinic nurse, called. I was at work and went into an empty office to talk to her. She was devastated to break the news to us, but they needed us back at the  hospital in two days. I was in disbelief. Shaking and not really comprehending what she had just told me. It wasn't sinking in and I didn't want it to. He wasn't going to go through this again. The rest of that afternoon is blurry. I remember my boss and a coworker driving me home. I remember trembling as I walked into the house knowing I now had to break the news to Mark. I just hugged him and didn't say a word. That alone was enough. He knew. I am so happy to be where we are today. It was a long an

Slow down. Stop and smell the roses, feel the rain, taste the air (although it may be harmful) and see the blueness of the sky. More than ever now, we need to pay attention to these simple things in what has become an overwhelmingly complicated world. We believe we are making it better and in many ways we are; the medical breakthroughs, the conservationism and social justice.   But in many ways we are also planning our demise. We have created an epidemic of depression; a mental health crisis. And while our government has recognized the problem, the solution is not removing stigma or throwing money at the issue. These are Band-Aids. Blanket support systems are inadequate and insincere. We need to address the root cause and accept we are our worst enemy.   Every day the pressures are mounting, expectations are rising and the pot is boiling. The root cause is the unrealistic expectations we have sewn and society has cultivated. We are perfectly imperfect. Stop pre

Here it is now almost eight months since the horror of Xavier's relapse and severe meningitis and the pain still lingers. Will it ever go away? Not likely. Our healing is a road that never ends running parellel with our reality of managing an incurable cancer. It stretches across oceans, through that darkness of space, up to light where our Heavenly Father hears our cries. Still I hear the sorrowful moans from my childrens bedrooms. Another bad dream I suppose, a nightmare that had come true. We entered another barrage of appointments; each a reminder of this journey we call childhood cancer. The weeks before the next MRI are always the hardest. For all of us. While some live their lives never having to step foot in a hospital with their child (aside from bringing them home after their joyous arrival) others see the walls of the hospital as a second home. Rarely do we walk the halls of Mac without recognizing a familiar face. It is strangely comforting. We live diffe

It was the first of two days I will never forgot.  May 31, 2009.  For some, you may recognize this date. It was an eruption of joy and euphoric exhaustion.  It was the day I became a mother. A mom of twins.  I can still feel the soothing heat swell in my heart as I held my baby girl and baby boy in my arms on the operating table for the first time. As I recall that day I feel a sense of pride and purpose.  It was the beginning of a new me. I was evolving inside and out as I began my journey into motherhood. It was going to be glorious.  But it wasn't easy. There were nights I wished I could just turn off the monitor and go back to sleep (of course I never did that!). And to be honest, there were days I hated being a mom. I didn't know what I was doing half the time and when I did get something right, it never worked out the same the next time. Twins were exhausting.  But just as I was settling into what I felt was the monotonous life of parenthood, the se