This Saturday will be one year without our Madox. One long, heart breaking year. It seems so long ago, yet is so fresh in our minds like it was yesterday. My heart hurts just thinking about his last week with us. The struggle, the fight, our tears, and fear. We will never forget how this week felt, and what we saw. It is too hard to forget yet too hard to remember. No child should have to suffer in any way, especially the way dipg kids do. Watching your own child fight to live is life changing.
What do you call the day someone dies? Don’t we as a society always want titles to go with an event? Well, it’s definitely not an anniversary. I think of those as a celebratory day, and this will never be that. Some say angelversary which I think I hate just as much. I tried to like it, tried to use it but it just didn’t feel right. If I have to label that day, I would call it a mark. A black terrible mark. It’s a mark on our lives, in our hearts. A mark you can never remove, and will never heal. It follows you no matter where you go, and shows itself when you least expect it. August 8, 2014 will always be a mark in our lives.
Even after almost a year, I still have a hard time saying those words “my son died”. I can say it in my mind but as soon as I say it aloud, tears come streaming down my face with no way of stopping them. When someone says ‘time heals all wounds’ they obviously haven’t buried their child. Time does not heal all wounds. Time teaches you how to live with this wound, but it certainly won’t heal it. Although I still cry talking about my son’s death, I still need to talk about him and his beautiful life. He brought so much love and joy into our lives, our families lives and into lives of anyone who met him. He completed our family, teaching me how to love more than I ever thought I could. He showed us what unconditional love looks like. The giant smiles we would get when we got home, the long and strong hugs we received before we left for work, the sweet ‘I love you’s ‘ when we tucked him into bed for the night. There was no doubt the love he had for us. It truly was unwavering. I just hope he knew the love and joy we have for him. Always and forever.
Wow, we have our own website now! This is great as we know many people don’t subscribe to any social media sites. We have thought about it but never had the time to get around to looking into it. The only reason why this is up and running is because we have some amazing people in our lives. Kate Nosworthy and Norman (Dean) Jones. They have taken it upon themselves to secretly get this page up and running before surprising us with it. Marco and I were absolutely speechless. I think I may have hugged them a few time while Dean was teaching a class. Haahaa. THANK YOU from the bottom of our hearts.
So a little about us and why we are here. As you can read on our page, Madox is our amazing and beautiful son. Very active, super happy, and always looking out for others. He has a brother named Valin who is only 14 months older than him. They are best friends, who rarely fought. And if they did fight, it was during a video game and easily and quickly resolved. My name is Suzanne, proud momma of Madox and Valin. Don’t forget Marco, protective papa of his two boys.
March 7th 2014 Madox was diagnosed with a brain tumour called Diffuse Intrinsic Pontine Glioma (DIPG). I’m not going into detail about it as it’s all on this site. What I do need to stress is the lack of funding and support DIPG and other brain cancers have been given in the last 40-50 years. No advancements in treatment, and most doctors have never even seen or heard about DIPG. They call it rare, affecting 40 children in Canada a year. I don’t call it rare because I know many families who have lost a child or losing a child to this tumour in the last year. It’s not rare. And even if it was, who are we to stand back and allow this to happen to other children, other families??? Marco and I refuse to, so we started up Madox’s Warriors. We will raise as much money as we can to support pediatric brain cancer research. Although we will be strictly concentrating on DIPG, it doesn’t mean we wouldn’t donate to a promising study related to brain cancer. Did you know only 4% of funds are allocated to pediatric cancer? The #1 killer in children and they only deserve 4%? Really?? Clearly there is no money in saving children’s lives, which is quite disgusting that is the only thing the pharmaceuticals think about. Even more disgusting, only 1% of that 4% goes to ALL brain cancers. There are at least 10 brain cancers children are fighting. What is 1% going to do??? To the many families who have had to bury their child, thank you for donating the tumour that stole your baby from you. Without those heartbroken but strong parents, there would be no cells to study. In the last 6 months, there are at least 5 different groups around the world making some headway with the DIPG tumour. We will do everything we can to help. Will you help us make the world better for our children? For your children and grandchildren?
Everyone needs to understand. Cancer does not discriminate your sex, age, colour, or religion. Please don’t look the other way and think it can’t happen to you. Turning a blind eye doesn’t make things go away. Support our cause, support our children. You never know when all this research and improvement of care may benefit you or your family. There was a time Madox didn’t have cancer. It really happens in an instant. You and your children are not safe from cancer. The next diagnosis could be your family.
So we are here, doing what we can to make a change in DIPG research. We are here, to honour Madox as best we can. We are here to bring awareness to everyone about the need for funding research for our children.
This is my perfect family. Mother’s Day 2013. This is our true family; goofy as always.