Be a Warrior! Help us Fight DIPG!




Everyday I think that I need to post a new blog. I think about everything I am feeling, everything that is happening in our lives, everything that I need to release from my shoulders. Then I walk past the computer and collapse on the couch. Even thinking about writing some days exhausts me. It really isn’t just typing words on the keyboard. It’s my emotions, my heart, the naked truth. Today I decided to sit down and write. Write anything, about anything. So this may be just a mess of words not making any sense.


I don’t like to socialize much anymore. To be honest, I wasn’t big on it before. More of a homebody, hanging with my boys playing vids and board games. Never did I feel embarrassed saying to friends “naw, I think I’m gonna pass.” I adore my friends. Without them I would never have been able to stay afloat after Madox’s diagnosis. There was one nurse friend I called the day after we heard about Madox. I needed to talk to her, to hear what she thought we could do, but more for her shoulder. When I called her I couldn’t speak. There was silence. She knew instantly there was something wrong so she kept talking. “Is something wrong?” I whimper yes. “Is it Marco?” Silence and tears. “Is it one of the boys?” More tears and audible crying. “Ok whatever it is, we’ll get through it.” And I blurt out “Madox has a brain tumour. I’m losing my baby.” Silence on both ends now and I can hear her crying as well. She pulled everything in with all her power and started talking again. Trying to comfort me, trying to figure out a way we can get treatment. To be honest, I don’t remember much of what she said after I told her. I can’t even remember what I said. All I know is that she stayed on the line with me and listened to everything I said, or didn’t say as I know I cried the entire phone call. Well the other day was her farewell party as she took a new job on a different floor. I hadn’t worked with her in years, but clearly she has always been a connection I never wanted to be severed. I really didn’t want to go be with other people, in a lounge, being ‘normal.’ But I went for her, and for myself. I felt I needed to be with people who I knew cared about me and did so much for us while Madox was ill. Most of the people there were amazing supports for us, raising money so we can stay home with Madox. Amazing group of people I worked with. Truly! Yet with knowing all that, to be honest, I felt like bolting as soon as we got to the restaurant. I sat there most of the time I was there. Before I left, I hugged everyone I knew and chatted to everyone for a few minutes. It really was nice to see familiar faces but I felt like I wasn’t actually there. I wasn’t present, even when I tried. I left early, which was probably best for everyone. I’m sure they saw how disconnected I was. I did smile a few times watching my friend enjoy her farewell party. She is a riot! It was so nice to see her so happy with her husband, being the goof she really is. Marco was proud of me for going. He knew I really didn’t want to go. I’m glad I went, even if it was just for an hour or two.




Today we watched a movie called ‘Alexander and the Terrible, Horrible, No Good, Very Bad Day.’ A comedy we thought would be fun to watch. Yet I found myself in tears at one point in the movie. One son is getting ready for prom and taking his drivers test. Why I instantly started thinking about Madox, I have no idea. Tears filled my eyes at the thought of never being able to teach him to drive. Never taking him for his drivers test and feeling nervous for him. Never being able to celebrate when he passed and letting him go out to pick up his buddies—in my minivan of course. We need to embarrass him a little right?? But that will never be and that hit me. It hit me hard. And prom? Madox never graduating, never entering high school at all. It really hurt my heart when I really didn’t expect it. I hate how things just sneak up on me when I just want to be. Guess that will never happen. PTSD at it’s finest I suppose.




As I sit here with tears in my eyes, Valin walked up behind me and hugged me. That’s my cue to go be with him before bedtime. Nothing is more important than your kids. NOTHING!

Good night everyone.






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