Autism, DIPG, and the Unbreakable Bond of Siblings

No, I want to just take her home. Let’s pretend this never happened. This can’t be happening. It isn’t true, she’s only seven.

I needed a moment to say all the things that weren’t helpful before I could process the diagnosis that was being handed to me in a suitcase with a weight that seemed too heavy for me to pickup and carry.

A moment of panic, as I felt my world crashing down around me.

We grieved that, accepted it, made a plan to support him, we are doing fine. How do I carry both, now?

So many have asked me how Jackson is doing with all of the changes and disruption to the normal day to day……. He’s doing incredible. He’s worried about his sister. He asks lots of questions. He’s told her a million times they are a team.

It’s like he knows how much she needs him right now.

She’s the first person he looks for to greet when he gets home now. They still fight like brother and sister, and to be honest I’m happy for that sense of normalcy.

He’s caring for her in a way I’ve never seen. With the help of an amazing team and family we’ve been able to keep his routine as uninterrupted as possible.

And Monroe?

She’s still worried about Jackson’s needs being met. She still packs a snack for him when we leave the house.

She still pats his shoulder and hugs him when he walks through the room.

She is alway close by in case he needs help.

She’s also scared but trying to be brave.

She knows we start radiation in a few weeks and she’s sad about so many return trips to the hospital. She knows she has a line in her arm we have to flush every day because it helps deliver important medicine for her brain.

They are both doing incredibly well, and it helps keep us standing each day. Watching them gives me strength.