Soraya Keeps Her Hair
Originally published on the blog Inchstones by KC by author, speaker, and advocate Kelly Cervantes.
Kelly’s Introduction
Easily, one of my favorite parts of marketing Normal Broken has been getting to know so many incredible people along the way. Through virtual and in-person events, I’ve had the opportunity to listen, relate, and connect with person after person who is facing their unique grief while craving a sense of community and understanding. One of these people, is Tasha Firoza Faruqui, a pediatrician and mother of three, whose middle child, Soraya, has an unknown neurodegenerative condition with no cure.
How do you tell your child that they are dying? How do you tell their siblings? These conversations are uncomfortable and painful, and they have to happen more than we would like to acknowledge. Today, I ask you to sit in the dark with Tasha, Soraya, and their family. To witness their journey and send them the love and strength they need, as they survive with tears on their faces and laughter in their hearts.
Soraya Keeps Her Hair
We had been keeping a secret from Soraya for six months and counting. She was 10 years old at the time with some mild cognitive delays - at what point do you tell your child that she is dying? How would she process and live with that information? At the guidance of our hospice team and Soraya’s therapist, we decided to wait until she asked to tell her.
It was with such mixed emotions that I hoped she never asked, while simultaneously carrying the guilt of knowing her destiny without her knowledge. Not only did we not have a diagnosis for her, but her condition was neurodegenerative- she would slowly lose skills, and muscle strength in every muscle fiber, until eventually she would lose the ability to breathe.
The dreaded moment came on Christmas day. Soraya sat on our bed and said “I want you to tell me all the things about my health that I don't know. I won't ask questions.”
Safi and I pulled in all our preparation with a big inhale. We slowly discussed that she was getting more and more tired and pretty soon she wouldn’t be able to walk or talk as much. We then told her that she was at a point where we could help her be comfortable, but we didn't have any cures.
It was as if I had closed my eyes while I said this and then peeked my eyes open to ask, “Is it over yet?”
Soraya paused and then said she already knew all of that before asking, “What do I not know already that you know?”
I felt like I HAD to tell her. I looked at Safi - his eyes told me that our job was done, and we didn’t HAVE to tell her anymore. However, the time was now. She deserved to know.
I just went for it. I told her she would die sooner than we'd expect or sooner than the average/typical person.
“Wait. What?! I am dying?!”
“Oh no! What have I done? Can I take it back?!” I thought.
I avoided looking at Safi’s eyes but still caught a glimpse of utter sadness. Not at me, but at the situation.
"I am confused. I don't understand. I am dying? I don't want to die!" Soraya sobbed as we held her in our arms in our bed.
We moved the hair out of her face and tried to explain that we didn't know when. That truly nobody did.
She continued to cry “I don't want to die. I want to stay. I am mad at God. Why would he choose this for me?! What's our plan B? Should I get the trach? No. I need a plan that is easier than that!”
We tried to find words that would comfort her and told her that she was an angel on earth and that God loved her very much and would take care of her. We genuinely believe she has a special connection and relationship with God and his angels. This brought her comfort as we saw her facial expression change.
She suddenly jumped up out of bed and said, "I need to tell my sisters!"
Before we could stop her she had her sisters sitting on our bed, both quite uncertain what was going on.
“I have to tell you something. It’s bad news. I am going to die sooner than a normal person." Soraya told them.
We tried to fill in some of the gaps. Leena (our 8-year-old) looked surprisingly unphased. Safi asked Leena how she was doing, and she said without hesitation: "I always knew this is how it was going to end" tears welling up in her eyes and rolling down her face in slow motion.
Leena said she knew the whole time. She said every time she saw Soraya get worse, it was harder to do things, to breathe, she knew she was dying. This is why she never wanted to talk about it.
At this point, Yasmeen (our 13-year-old) was sobbing as well. We all lay in bed and cried for what seemed like an eternity. Then, Soraya took it upon herself to make each person stop crying by making them laugh with a joke. Soraya told us matter-of-factly that she was not scared of dying. She consoled us by hugging and snuggling each of us.
Then, Soraya popped her head off my chest looked at everyone, and said, "It's like I have cancer, but I get to keep my hair. Wait, I get to keep my hair, right?”