Dear Michael,
Eight years ago, we said goodbye. It’s so hard to think of time continuing to pass without you here. People say that “time heals all wounds,” but we do not agree. Time has not healed us. We keep missing you more and more.
Each painful milestone, we write to you. We try to frame things in a way that will be palatable for everyone reading, but the raw and honest truth is that we are so sad and mad and devastated that we can barely see straight. All of us walking around with these kid-sized holes in our hearts are doing the best we can, but the shattered insides remain no matter how much time has passed.
When we think of you, we think of how incredibly smart and funny you were. You were so determined to beat any challenge. Whether it was learning to read, mastering baseball skills, or knowing all of the characteristics of every dinosaur. Your heart was so warm, sweet, and compassionate, and your sister has those same qualities.
We think of how seriously you took your role of big brother. You always wanted to be with Lila and protect her. You hated the song “Do You Want to Build a Snowman?” from Frozen because it comes at a time when Elsa was not letting Anna into her room to play. You were so upset by the idea of Lila shutting you out. You said you would break down the door or crawl in a window. You would never accept being apart from your sister, and the fact that you are not together now is so crushing and unfair.
If there was a way to change what happened, or if Mommy or Daddy could have taken your place, we would have. But knowing we can’t, we now do all we can to fight for a cure — inspired by your bravery, fueled by our pain, and driven by a desperate desire to save others from the agony you and we endured. You would not give up. You DID not give up. And neither will we.
It’s an honor that May 17th is now recognized nationally and internationally as DIPG Awareness Day. We were so proud to work in partnership with so many families to make that happen. But 6-year-olds should not have days established in their memory. They should be here living out their dreams.
It’s been 8 years. But whatever the amount of time, rest assured that as long as we are here, your name will be spoken. Your memory will be cherished. And your sweet smile will be missed so deeply every single day.
Love,
Mommy, Daddy, and Lila
