While many were gearing up for back to school, we had one more big event before summer break ended: a 3-day hospital stay to determine whether Soraya has seizures.

Yasmeen and Leena met with Soraya’s pulmonologist and palliative care doctors last week to ask questions, and it really brought to light how differently the girls process.

So much happened in the last two weeks that it’s hard to wrap my head around.

Soraya truly wants the world to see her struggles, her journey, and her joy in order to help others who may feel isolated from being in their own struggle. So when we were contact by SEEN.tv with a request to feature her story, we said YES!

It’s July. We did it. We passed the timeline our doctors told us for when Soraya would die.

Without prompting, Leena recently asked if she could learn how to administer water through the g-tube for Soraya! Safi and I were shocked.

I’ve noticed that when people talk about siblings of individuals with complex medical needs, certain characteristics come up. They’re described as very empathetic, extra compassionate, and having the inherent desire to be a caregiver for their sibling.

What do you do when they pharmacist asks, "Why would a child need pain meds like this?”

How do you tell your child that they are dying? How do you tell their siblings?

The Make-A-Wish foundation granted Soraya’s wish of learning to surf in Hawaii!

A few weeks ago, Soraya asked me to have a sleepover. She goes to bed around 7pm, so I was wide awake at 3am. It was then I noticed tightening and stiffening of Soraya’s legs and hands. I didn’t know what I was witnessing but knew I couldn’t get her muscles to relax.

I’ve been outsourcing child care for work, meals, rides, etc – now I need to outsource normalcy?! This idea that I cannot provide something my child desperately needs is earth-shattering.

With how openly I share now, you may be surprised to learn that I haven’t always been so open about what’s going on with Soraya’s health.

That’s when I realized – parenting norms don’t apply to me. There’s nothing “normal” about our life and nothing “normal” or typical about the choices we make.

Dance recitals are extra emotional for me. It may be because watching 3yr olds to 18yr olds dance feels like a visualization of life and growth. It brings up such a mix of grief and gratitude – grief that Soraya will never have that and I miss it for her, and gratitude for how absolutely AMAZING it is that I get to watch Leena dance.

We are one week past a pain med increase and it’s evident that things are progressing. Whether it was a quick visit to Ulta or just visiting with friends this weekend, Soraya was flared up and behind her pain curve and it was BRUTAL.

What I am realizing from my trip to Chicago with Leena is that she craves normalcy. She doesn’t necessarily want extravagant trips or experiences; she wants to do “regular” things, like eating homemade waffles made by my friends and playing barefoot in the sprinklers.

ALL of us have had howling, breath-stealing cries randomly throughout the week.

I immediately noticed how warm and welcoming everyone was. I told Yasmeen, “I think I found where I belong.”

She told me, “I’m afraid of dying sooner. I don’t want to leave you. I don’t want to leave Daddy. There are days when I just don’t feel like I belong, but I still want to be here with you. My body hates me. It’s getting more tired, but I want to be here.”