I made it through my first reconstructive plastic surgeon consultation for my future preventative bilateral mastectomy.

Life does not give us a pause button so we must create one.

It’s been a week since I shared my genetic testing results and subsequent decision to get a preventative bilateral mastectomy...

At my routine Well Women exam, I was flagged to undergo genetic testing due to my familial cancer history...and it came back positive.

WE ARE GOING BACK TO HAWAII!!!!!

We look forward to this event every year. However, this year's symposium was tougher than others we’ve attended.

Many of you have asked (or wondered 😉) why Soraya is always wearing bandaids on her forehead, arms, and legs...

I keep thinking – how did we go from buying school supplies to installing stair lifts so Soraya can access the different floors of our home?

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.