August 8th 2014 will always be the hardest day for us as a family. That was the last time we heard you breathe, felt your warm skin against ours, and kissed your soft cheeks. Yet today holds a close second in our hearts as it was the last time we laid eyes on you. Last year today, we saw you for one last time. You did not look like our Madox we have always knew, but we loved you just the same. You did not move, did not breathe, did not smile… just did not. The vibrant life you carried in your entire being was no more, and that hurt so much. You laid in your white casket while we stood at your side. Your face was still swollen from the last few months of steroids, but we were hoping it would have gone down. Another thing we wished for that wouldn’t be.
Family came to say their final goodbyes. We all took turns kissing your cold cheeks or forehead. We put your favourite stuffed animal at your side, with a few of your favourite toys. Things I really didn’t want to let go of, but just felt right to bury with you. Marco and I covered your body up with your blanket, making it the very last time we would ever tuck you in. I pulled it up right to your chin, as I was thinking how cold you were. Like covering you with the blanket would warm you up somehow. Valin wrote Madox a farewell letter that he gently added to your side. I couldn’t stop staring at your beautiful face. I still dream about that day, about seeing you lay so still without breath, without life. It is forever scarred into my soul.
At 2:00pm the funeral director came into the room to say it was time. My heart started to race knowing what that meant. We will never see you again, except in photos. My eyes began darting up and down your body, trying to memorize everything I could. Yet I know how silly that fleeting moment was as I know I would never forget your gentle face, your slender hands, or flexible legs. Tears came furiously as we three quickly leaned in for one last kiss. I felt as though I was going to hyperventilate as the director slowly began to close the lid. You were gone from our sight, but never from our memory. NEVER from our memory, or heart. Walking to our seats and most of the service was a blur to me. I don’t remember what was said during or after the service. I only remember staring at the closed casket and silently sobbing. I held Valin’s hand the entire time as he sat between Marco and myself. This day was very hard for us all, and the memory of it will linger for many years.
Today will be the last of all the years “firsts.” Some say it gets easier to handle after the first year, while others admit the second and third years without your child are the hardest. Whatever the case may be, we will try to get through each day as best as we can. With each other, fighting to keep Madox’s name alive.
This photo are of a few flowers I kept from the bouquet that laid atop Madox’s casket. After I dried them I wanted to frame them to keep them safe. They hang in our bedroom, with a few toys Madox enjoyed. I just wish this day never existed.
What do you say about a day that hurts? A day that is burned into memory. A day that took away so much.
So many mixed emotions. So sad and heartbroken. No new memories to be made as a family of 4. No snuggle up nights while watching a movie. No soft kisses as we say goodnight.
So very very angry that I doubt will ever diminish. Angry that cancer exists. Angry that it found my perfect baby. Angry that I truly thought we were doing everything right to prevent cancer. Angry at how naive I was. Angry at the doctors, researchers and pharmaceuticals for not fighting for our children..my child. Just so angry.
Last year today we did not hear you speak, did not see your eyes, did not feel your hugs. The day started with you in a deep sleep with the help of all the medication I had given you to help your pain. Marco, Valin and I all took turns snuggling up to you in bed. Reading to you all your favourite books. And singing all your favourite songs. Never once stopped from telling you how much you are loved and how brave you were through it all. Marco and I apologized many times as well, for not being able to protect you like parents should. All the while, staring at our beautiful amazing son who was dying right before us. And all we could do was watch.
Madox. You will always be the light of our lives. You will always be loved and cherished. You will always be our little guy who taught us how to laugh and be goofy, even when it hurts inside. You will always be…….our perfect Madox. 💙
We miss everything about you Madox…..today marks one year since you were stolen from us by cancer.
We miss you
We love you
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.