Anticipating Grief Doesn’t Stop the Sting

While we are HYPED for tomorrow’s Make-A-Wish Gala, we also had to work through some tough things this week.

Starting on Monday, Soraya was too tired to even come out to the driveway in her wheelchair to watch the solar eclipse. We instead sat on the couch and watched as the room got dark. It’s beginning to settle in that missing things like this is our new normal.

Then we had a bunch of different meetings...

We met with our county social worker to request another chairlift so Soraya can play in the basement.

We had an IEP meeting to put into writing that Soraya is done going to school. We updated her team, cried together, and asked for her teachers to make Soraya videos saying hi. We hope for her to be able to watch choir class over a webcam so she can still participate. We also asked for teachers to visit her at home if they’re able.

Our palliative care meeting was particularly difficult. We all acknowledged what a huge change not going to school is for Soraya and talked about her quality of life. I questioned why this is so painful and hard when we knew this day/decision would come? Our doctor calmly said, “Knowing what will happen doesn’t stop the sting for when that reality sets in.”

This was PROFOUND for me…I need to give myself grace and let the sting hurt. We upped Soraya’s pain patch and went back and forth with insurance about it.

On a lighter note, I leaned into the joy of my job and talked about puberty & periods with some lovely 10-year-olds with the help of Yasmeen! Got the best card after and realized that our pain and experience gives me superpowers to truly connect with families ❤️

Plus our nanny Kaytlin is back from her vacation!!

That’s what’s up in the world of the Faruqui Five. How was your week?