Soraya had a BIG day today – she went shopping for a dress for the upcoming Make-A-Wish gala!

I think there are things that come up for us, specifically our kids Yasmeen and Leena, that really put into perspective how having a medically complex child/sibling impacts everyday things.

Today during our palliative care appointment we took a step back and looked at the big picture. I asked the hard questions: Where are we now? Where are we going and are we headed somewhere bad fast?

I am taking off my invisibility cloak – I have Ehlers-Danlos Syndrome! So, what does it look like to be a caregiver AND someone with a chronic illness?

Leena had a classmate ask her, “When will Soraya heal?” This question reflects the assumption that Soraya was injured, that she can’t walk, and that she will get better. ALL of these assumptions are incorrect and painful for Leena to have to hear, let alone try to explain.

With so much happening with Soraya, one may wonder how her impacts her siblings. I wish I could say it only impacts them when BIG things happen or when it impacts Safi or I, but that isn’t the case.

How do you decide when to seek one out? How far do you go to get it?

While Soraya felt brave going into the hospital with Safi, the rest of us were weary. The feeling of her being gone was a bit haunting.

The fatigue, planning, grief, and mental gymnastics it takes JUST to be physically present is hard.

Soraya’s sleep study got moved up to THIS MONDAY! Safi and I were excited...until we realized all the feelings it brings up 😥

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.

Safi took Soraya to a routine orthopedic appointment this morning for her scoliosis and hip issues. Simple enough, right?

Wrong – Grief stopped by!

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.

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.

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!

There are so many conditions that we have to share with friends and family before we have them over so they’re adequately prepared.

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.

The holidays bring up a whirlwind of emotions – three words that describe how I’m getting through this season are Muster, Magic, and Stillness.

We met with Soraya’s palliative care doctor today. These appointments are always incredibly tough – it almost feels like they make things more “real”.

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