Day in and day out I try to live life. Some days I try to find the life we once had, knowing within seconds it’s impossible. I search for the woman I use to be, yet is nowhere to be found. Illness changes a family so much, but a death destroys it. Destroys in a way that nothing will ever be the same. You will never laugh the same. You will never have that fully relaxed smile again. It is just gone. Some families end up so destroyed that parents divorce making it more difficult to find the support they need. I am so thankful we were a very close family. Marco and I would always rather spend our evenings with our boys then our friends (no offense). One time I actually had a good friend laugh when I told her how excited I was to get off work early that day because we were going to play board games all night. “You actually PLAY with your kids?” I was confused but answered proudly “well yea, what else do you do?” I feel our closeness created such a strong bond between us all that it has helped us “live” through this nightmare. Don’t get me wrong, we struggle with our day to day sometimes. We argue over unimportant things. We cry at a drop of a dime. We pull away and want to be alone at times but it doesn’t change in the end. We are together because of the love and bond we created over the last 13 years.
Last week Marco and I shared our 13th anniversary. We shared a cake, enjoyed our card made by Valin and sat together at Madox’s resting place for a short while. The things screaming so loudly that day was not feeling Madox’s hugs that morning. Not receiving his intricate card he worked so hard to make over the course of the week. There are so many little things we always cherished and looked forward to, and now they are all gone. I am so glad I saved every single card Madox made for us. No matter how small. They are kept safe in my bin of homemade art given to us over the course of his short life. Now my new bins of art will fill much more slowly and there will only be one name on the art.
We will never stop seeing reminders of your life Madox. We will never stop yearning for the life we once had. We will never stop missing and loving you. You will always be a part of us.
This photo was on Madox’s 9th and final birthday. He had been home only 2 days since being in hospital almost 3 weeks. He was pale, tired, could only see from one eye and the effects of the ICU medication still in his system. I threatened to take him home AMA (against medical advice) because I wanted him home for his birthday. He couldn’t walk and we happily carried him everywhere. Considering he almost died a few times while in hospital, we were happy to do anything. In this photo Madox and I shared a moment. This photo makes me sad knowing how ill he is but so happy because I can see the love he has for me. I hope he saw and felt the immense love I always have for him. He will always be my favourite little guy
Children that are fighting or lost the battle against DIPG.
Meet All DIPG Warriors