Christmas Day & Reflections on Change

It’s the day after Christmas...and with that comes Leena’s birthday and being a year out from our conversation with Soraya - THE conversation. Birthdays and holidays bring up a lot of memories for me.

Last Christmas is when we told Soraya that she was dying and that her undiagnosed disease had no treatment. She then shared the news with her sisters. Since then we have been treading life carrying this knowledge and weight and anticipatory grief together. 

It’s so hard not to notice the changes in a year...

• Soraya has less energy to go to school and now only goes to one class

• She is more tired all.the.time

• More BiPAP/ventilator time is needed because of her weakening chest wall muscles

• She has trouble walking from one room to the next

• She has more pain and with it comes the need for opioid meds…. We thought we’d have more than a year to get to this 💔

Traditions Soraya (and subsequently the rest of the F5) said goodbye to this year – Dancing to “All I Want For Christmas Is You”, playing games sitting up, staying awake past 6:30pm, setting out cookies for Santa, and sprinkling the yard with reindeer food.

While her sisters woke up in excitement for Christmas, Soraya woke up with excitement AND pain in her arms.  It was such a mixed feeling to see both and to see Yasmeen and Leena’s faces as we added more pain meds through Soraya’s G-tube.

So much change, and there’s just never enough time to grasp where we are as our reality keeps changing. I can barely get my footing before the ground shifts again.