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Category Archives: Blog

Home away from home

 

 

 

Another Mother’s day has come and gone. It is always tough to understand emotions that become so present and prominent in one specific moment. Those moments have me realize that I’m just pieces of who I use to be. Fighting to keep those parts around, for myself and those around me. Living in ones tangled state of mind.

 

 

No matter how I feel on one specific day, I try to live in the moment with Valin and Marco. They deserve it. I deserve it. On Mother’s day, we woke to enjoy a nice long walk together at Birds Hill Park. Something we’ve never really done. We have always had a nice family bike ride, ending at the beach with a picnic. I wanted to bring something of Madox’s so I could feel him with us. I immediately grabbed his medical alert bracelet. The only item he never took off, well until he was diagnosed. I kept it in my pocket, holding it, gently rubbing the inscription. It made me feel he was walking alongside us.

 

 

 

Walking at Birds Hill Park

 

 

 

We then headed to where Madox was laid to rest. There was no discussion about it as it has just become a tradition we adopted. The last place we ever got to see his sweet soft face. The last place we could hold his hand. The last place I never want to be on Mother’s day. Our new home away from home. People say I shouldn’t go to his plot. They say it just reopens wounds. Sorry, but these wounds will never heal. They are still wide open and gaping. How would you feel if you were standing in my shoes? You would do what you feel is right, in the moment. What you feel is necessary for your heart. What you feel you need to get through another day.

 

 

So we sit where our son is buried. Think about past memories, sharing happy stories and sing a song for him. I laid two cookies for him made by two wonderful friends. An older friend who was lucky to have met Madox, and helped me through some very hard days when Madox was ill. And a newer friend who never met Madox, but he was the reason we met. He brought us together, creating a friendship that may not have happened.  So I sit by his plate, tears raining down. This pain hasn’t faltered. At times I may seem crazy. That’s okay. I would have given up my life for him. I would have sold my soul. That’s not crazy I realized. That’s just called mom. I clearly didn’t get to choose either of those options. Instead we continue to sit here. Wishing everything was different for this mom on Mother’s day.

 

 

love made by friends Angi and Rhonda

 

 

 

Thirteen

 

 

March 30th was Madox’s birthday. I normally would write something on his day to remember and honour him. This year was hard, which surprised me actually. I thought I would be the same sad self wishing things were different, and I still able to write.  This year we were all home together as his birthday landed on good Friday, which meant we were all off from work and school. I felt sluggish, with no care where the day took us. We stayed home and didn’t do much until the afternoon where we met with family to have Madox’s birthday cake and release balloons.

 

 

The day came and went, then a week, then two. I couldn’t bring myself to write about Madox’s birthday. I couldn’t understand why until the other day when I saw a few of Madox’s old friends and classmates walking to school. I saw how much they changed. They were together laughing, walking, enjoying their morning. My heart felt tighter in that moment. These boys I remember, aren’t little boys anymore. They are teenagers now. They were only 8 and 9 years old when Madox died, and now they are teens living life. That’s when it dawned on me why I avoided writing anything. Madox would be a teenager this year. 13 years old. But we never got to enjoy it. Never got to see what he would look like, what he would be into, if he had attitude like me or calm and happy like dad. Teenager! I should have 2 teenagers in my home, but we were robbed of that. So I wrote nothing.

 

 

As I contemplated the past few weeks about writing for Madox’s birthday, I have been thinking of his last birthday with us. His 9th birthday. He was so ill, recently released from hospital and still needing a hospital bed in our living room. When we spoke to him about it weeks later, he doesn’t remember it at all. That made Marco and I sad. So we showed him photos of all his family and friends that came to be with him on his day. Even though his dream wish was already going to be special, we ensured we made it extra special for him. Knowing it was our last trip together, but also to celebrate his 9th year on this earth, as our son. We did everything he wanted to do. He even went on spinner rides over and over. Still to this day we have NO idea how he managed to go on those rides and not get dizzy or sick, due to where the tumour sat.

 

 

 

Madox loving on his dad

 

 

Madox loved us with his entire being. He never shied away from showing affection in a crowd. He would hold our hands and hug us any chance he got.  As you can see in the photos here. Madox’s arms are always around us, which we loved. Madox thought Goofy was the funniest character. He wore that goofy hat the entire 2 weeks on that trip. The photos here show Madox’s true self. Loving us, and being goofy any chance he got.

 

 

 

Loving on mom in our family photo

 

 

 

Being super with his bro and the Incredibles. FLEX BOYS!

 

 

Happy unearthly birthday Madox. We miss you with all our heart. We miss your giggles, smiles, hugs and snuggles. We miss who you should have been. Thank you for giving us the gift of your love for those 9 years. You are loved my teenager.

 

 

Unjust

 

 

I recently went to see an osteopath for my hip pain, and the first appointment was this week. I have had this pain since 2014, about a week before Madox was diagnosed. I have had MRI’s, X-ray’s, and bone scans. I have seen physiotherapist, chiropractors, and sports medicine. I have even tried yoga, which I have never been interested in. After being written off as “no anomalies to the structure of hip and surrounding tissue”, I have finally settled on it’s all in my head. No, I don’t mean I am making  it all up. I mean the trauma of Madox’s diagnosis and death has been buried deep within me and seemed to settle in my hip. A small injury at the time that would have healed easily if I had tended to it instead of putting all my thoughts and soul into Madox and his care. Now 4 years later, I am struggling with everyday tasks due to this chronic pain.

 

 

As I am standing in front of the osteopath, he tells me he sensed a lot of unjust coming from that hip. Unjust. I never thought of it that way. That word really just hit me like it was the first time realizing it. It’s so obvious. Yes I am angry, and have guilt and still so very sad. Yet I never thought of thinking ‘unjust’ that puts all those feelings together. No there is no fairness in a child suffering and dying a slow painful death. There is no reason for a child to die at a young age while I continue to live. He was healthy, happy, and active. WHY was he given such a short life while murders, pedophiles and just terrible people live a long life with people they love. Madox would have been amazing for the world, making a positive impact with others, but instead gets cancer.

 

 

For those who “can’t understand why” I am still sad and angry about Madox’s death, think about what I just said. Think about how as Madox was dying in bed next to us, everyone was living their lives like nothing important was happening. Think about how we buried our 9 year old son while you laugh with your child. Think about how in a few days we will be standing at our sons plot for his birthday, while you happily share a meal with the ones you love. There is no fairness in any of it. It should have been me. It should not have been Madox. Never should be a child. NEVER!

 

 

So yes I struggle some days. I struggle with my anger. I struggle with depression. I struggle with PTSD. I struggle trying to find an answer I will never get. I struggle with people making comments about me. I struggle with pretending to care. I struggle. Everyday is a struggle. Either we have learned to pretend a little better or you learned to pretend not to see it. We all struggle through life. Sometimes it can be debilitating and takes on different forms.

 

 

 

today

 

today.

 

today is the first day that changed our lives.

 

the day I felt a fear I never knew I could feel.

 

the day I felt helpless.

 

the day I felt the world was against us.

 

the day I hated everything and everyone on the planet.

 

the day I wish I was chosen.

 

the day that showed the truth of our life.

 

the day I knew I was going to lose my child.

 

the day that told us Madox is going to die.

 

 

March memories

 

 

I believe our body is conscious of pains and memories before our brain tells us these flashbacks are coming. I can feel a change in my behaviour, mood and sleep when a hard memory approaches. Marco feels it in himself as well, and we can see it in Valin. We all feel a bit more heavy, quiet, and fatigued. These thoughts are always at the forefront of our minds.

 

The day Madox was diagnosed is fast approaching. I think about how he was showing mild symptoms we mistook for simple every day things. While skating he complained of feeling tired and didn’t want to skate anymore so we pulled him holding the hockey stick and made a little game out of that. Another sign was he couldn’t turn the door handle on the back door with his left hand (the one that he lost complete control over during his illness) but we dismissed it because that handle had always stuck and was hard to turn. I hate myself for not being more alert to these symptoms. Why I didn’t pay closer attention and piece them together. Yet none of them were all in the same day, but randomly throughout the weeks. I guess it was easy to miss.

 

 

 

 

This week was when Madox began looking at us with one eye closed and said he was “seeing two”. We immediately clapped and said he’s going to need glasses just like his mom and brother. Over the week it got worse and he would say his sight was blurry now too. I knew this can’t be just needing glasses and the word tumour was blazing in my thoughts. I kept thinking he should have nausea, headaches, something else with the blurred vision. But every time I pressed Madox, he denied it all. We took him to an optometrist hoping I was wrong, saying glasses would fix it all. The only time I did not want to be right.

 

So I lay in bed thinking. Thinking of the week leading up to diagnosis. Thinking we should have taken him in to emergency sooner. Thinking being diagnosed a week earlier may have changed his course of illness. Thinking nothing we could have done differently would have changed the outcome. This month is tough on us all. Diagnosis day, Madox’s birthday and all the terribleness in-between. We use to look forward to March. That was before diagnosis day happened. That was before we heard the letters DIPG.