Leena has been struggling with friendships lately. She feels isolated and as if no one understands the hardship she’s going through.

We laid in bed and Soraya began telling me all her worries. She said, “Mom, I am afraid of dying sooner. Do you think I have a choice?”

Ultimately, the gala ended up taking on a greater meaning than any of us could’ve expected.

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

The gala is this Saturday (April 13th), which also happens to be the day before Soraya’s 12th birthday. All Soraya wants for her birthday is a formal party, and we are DELIVERING 🙌🏾

So much has changed for our family in the last week. It’s a lot to take in, and each of us is processing differently.

I know it’s common to struggle with getting back into the swing of daily life after being on vacation, but WOW have these last few days been difficult.

Planning/packing for a trip when you have a medically complex child is a LOT. I need a nap just thinking about it.

I'm beginning to realize that there’s NO escape from the sadness and grief that can come at any time.

Our palliative care physician’s advice on planning when in hospice? Plan for the best-case scenario, and the worst-case scenario, and keep living each day.

It’s so hard to not have a diagnosis. Rare Disease Day is a day that we at least can be a part of. We can take a day and have a moment to bring awareness to other families that are like us ❤️

Last February, I really felt like I was drowning in my sadness and grief with no space to share, feel, or guide how to navigate my life with Soraya in hospice. I had asked Soraya’s medical team for resources on living with anticipatory grief, and they didn’t have ANYTHING to share with me.

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.