Skip to main content

When you think you can't take anymore


That was me about three days ago. I was done.

Over and over again I hear myself telling others how I am hopeful of Xavier's current treatment. I put on that positive attitude, smile and say it's going to be ok, it's just going to take time. I hear the words leave my mouth, but inside I don't believe them. It's a canned phrase now - you know the one people want to hear. 

They don't want to hear me say life really sucks. The days are painful, literally, having to carry around a 70 pound boy and up and down stairs. The nights are even worse when the emotional pain comes pouring out of all the little cracks inside where we tried to tuck it away during the day. All the fears, all the anger, and all the exhaustion. 

Three days ago Xavier said he forgets now what it even feels like to run. My now 7-year-old son who once took kickboxing and could keep up to his sister kicking a soccer ball around, hasn't been able to run since last July. Some days he can barely walk. It's devastating for me and I can't even imagine how he must feel. To have known what it was like to be a carefree kid and then to lose it all. To have experienced your independence and then lose it all. 

It's so easy to get lost in the negative of this situation. The journey has been so long and this time around there has been little reprieve of his symptoms since August. My stamina for this is running out and I need a recharge. We have all lost our shit at least once now; felt like giving up and walking away. 

But then suddenly life throws you another perspective. That came in 3F cancer clinic. Week after week I see the same families, the same people, the same kids being hooked up for their weekly dose of chemo. But one in particular reminded me of Xavier when our journey just started. 

She is only 18 months old. She has a beautiful smile and big happy blue eyes. She loves to say hi to everyone. This adorable baby is a foster child. Her parents gave her up after her cancer diagnosis. They walked away. Now her foster mom is there every week giving this beautiful little girl a chance at life. 

When I heard her story the other day, my heart sank. How could someone walk away from their sick child like that?  As much as I know the struggles of raising a sick child, I couldn't help but think of all the wonderful, loving experiences this journey has brought us. 

Every hug is special. Every kiss goodnight is precious. We have learned how to love deeper, love stronger and ask for forgiveness. My heart would never have been as full as it is now. I see the beauty in the depth of understanding and breadth of feelings this journey has brought upon us. A blessing in disguise revealed by a random conversation with someone I had seen time and time again but never spoke to until that day I was done.  

God's timing is impeccable! 








Comments

Popular posts from this blog

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 d

In a perfect world this stuff wouldn't matter

As our family anxiously awaits Xavier's surgery date, we are struggling with the range of emotions associated with another hospital stay. Unfortunately, the sad and most stressful part of it all is the feeling of having to rush back to work. Not because we want to, but because we have to. Even with the latest addition to Employment Insurance for parents caring for critically ill child, it is restrictive and difficult to qualify (like most programs to get money from the government). And it is only up to 55% of our wage (although I would take what I can get). Then there is Short Term Disability through work. Again, very challenging to get and the constant inference from the insurer is almost not worth the effort of applying. Plus, it is not my disability. It is my son's. I am not sick. However, I could argue the emotional toll it has on my psyche affects my productivity at work. And the last option: to use up all of my sick days, all of my vacation days and all of my leui

Kids need to be kids - even with cancer

No one wants to see their child hurt. But when you have a child with a serious medical condition, seeing your child in pain can often be a frequent occurrence. Physical pain is one thing - emotional suffering is another- one I had little experience with until recently. (Yes, I am struggling, so that's why I am writing!) When Xavier was initially diagnosed and treated for brain cancer, he was a baby. He couldn't talk, express his feelings or even remember the trauma he suffered. Now, he is older, smarter and more thoughtful - yet too young to understand. About a month ago we started to see a change in Xavier. He was different. His sleep patterns changed, he was lethargic and other symptoms arose that concerned us. An MRI was immediately scheduled, followed by appointments with multiple doctors. A lumbar puncture has now been scheduled. I am not concerned they will find more cancer. I am not worried there is anything physically wrong. What has me scared and heart broken i