Keep up with the Faruqui 5
The Mental Gymnastics of Showing Up
The fatigue, planning, grief, and mental gymnastics it takes JUST to be physically present is hard.
Soraya’s Upcoming Sleep Study
Soraya’s sleep study got moved up to THIS MONDAY! Safi and I were excited...until we realized all the feelings it brings up 😥
Our Own Island
Safi and I often describe our feeling of anticipatory grief and knowing that Soraya has a shortened life as if we are on an island with just the five of us.
Addressing the Elephant in the Room
Safi took Soraya to a routine orthopedic appointment this morning for her scoliosis and hip issues. Simple enough, right?
Wrong – Grief stopped by!
Feeling Excluded at the Dinner Table…and in Life
We had a family meeting on Sunday because Soraya has been feeling excluded at the dinner table. It was HARD and emotional and beautiful all at once.
Say It, Don’t Feel It
There is NO easy way to share that your daughter is dying, so I have to get into a “Say It, Don’t Feel It” mindset.
Let’s Talk About Grief
I’ve found so much comfort and connection as we talk about grief together. These conversations have gotten me thinking a LOT about Anticipatory Grief and the Grief that one feels after the death of a loved one. It’s been really eye-opening!
Preparing Friends & Family Coming to Stay With Us
There are so many conditions that we have to share with friends and family before we have them over so they’re adequately prepared.
Christmas Day & Reflections on Change
Last Christmas is when we told Soraya that she was dying and that her undiagnosed disease had no treatment. Since then we have been treading life carrying this knowledge and weight and anticipatory grief together.
Muster, Magic, Stillness
The holidays bring up a whirlwind of emotions – three words that describe how I’m getting through this season are Muster, Magic, and Stillness.
Palliative Care Appointment Realness
We met with Soraya’s palliative care doctor today. These appointments are always incredibly tough – it almost feels like they make things more “real”.
What Do You Say to Someone Who’s Grieving?
Sometimes, people get so scared of saying the “wrong” thing to a grieving loved one that they just end up not saying anything – but that silence can be just as painful
Holiday Joy…and Grief
The holiday season brings up traditions, memories... and when those memories of Soraya are such a contrast to where she is now, it’s gut wrenching.
