8 years down this desolate road. The road of loss, and sadness. The road of pretending and hiding. The road walked by many, yet feeling alone on the path. The road we navigate at diagnosis.
Although it has been 8 years, this day remains fresh in my mind. The dread. The fear. The anxiety. The anger. The sadness. Oh the deep guttural sadness that escaped me. It stays with you, no matter how far down the road you are. It haunts you. It divides you. It breaks you.
With DIPG, you get stripped of any hope. No treatments. No future. Just “making memories” for the short term. How do you absorb a death sentence? Knowing that death is near? How do you tell your child, your baby? The one person you swore to protect from harm and hurt. There is no right or wrong way. There is no must or must not share with them. Only the parent knows if and when it is right. We shared with Madox his diagnosis. We did not tell him he wouldn’t survive, until he flatly asked us months down the road. I was honest. I was shattered. It broke me again, not realizing I could feel more defeated.
Diagnosis day is not an anniversary, but a nightmare. A nightmare representing our future struggles, and the unknown future. Our lives being shattered into a million pieces. The day the world grew dark and silent around us. The day medical staff watched us crumble before them. The day we realized our son had no future and we couldn’t stop it. We couldn’t stop it.