Be a Warrior! Help us Fight DIPG!




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.





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