How We’re Processing Soraya’s New Schedule

So much has changed for our family in the last week. We went from getting used to the stairlift—a physical reminder of Soraya’s increasing need for support—to shifting into a new daily routine with Soraya no longer attending school every day due to her fatigue. It’s a lot to take in, and each of us is processing differently.


Yasmeen

We told Y about Soraya’s decision to go to school once weekly during dinner on Monday (Leena was at dance, so we told her separately). Her jaw dropped. She was silent for a while, then asked, “Does this mean she won’t go to jr. high in the fall?”

Safi and I told her the truth – we don’t know. All we know is that this is what’s happening now.

Y has a lot on her plate. She’s juggling her first year of high school and homework, plus all the activities she loves to do (choir, a capella, club + varsity swim, Spanish, sibling advocacy). When I asked her how she was feeling about everything last night, she said, “It’s hard. It will hurt more later, but I’m just numb since I have homework to do.”


Leena

We told Leena about Soraya’s new schedule on the way home from dance. She said, “I hate that she has to do this because I feel like she’s closer to death.”

Her words caught me off guard. I paused and then said I could see why she feels that way, as that’s definitely a fear I share. I said I know things seem to be happening fast, but there’s no guarantee they’ll continue at this rate. We can hope for a plateau and that Soraya taking more time to rest might allow longer between changes.

This seemed to comfort her. She’s looking forward to spending more time with Soraya in the mornings and is hopeful that Soraya taking more time to rest will allow her to have more energy so they can play together when she gets home from school.


Safi and Tasha

Even though we live with anticipatory grief and knew this would come, we weren’t ready for it. I don’t think we ever could be. But we are putting our sadness aside and making sure we only show Soraya support, as we know this is what’s right for her, and focusing on holding space for Leena and Yasmeen.


Isn’t it wild how we all experience things SO differently in the same household!?

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Soraya is No Longer Attending School