As I was listening to Rola Moemen, a chemistry high school teacher, tell the story of her daughter, Tala, the word “grace” came to mind. Composed and elegant, speaking in solemn tones, she told us of her journey through fire. This is the story of grace born out of suffering and the quiet strength forged out of pain, humility and an abiding gratitude for life in all of its glory and horrors.
When Tala was first born, Rola noticed something odd about her features. But she kept it to herself. Having had a relatively uneventful pregnancy, accompanied by all of the routine genetic screening that every expectant mother undergoes, she chalked up her niggling doubts to her worrisome nature. However, as the months passed by, other symptoms emerged: Tala’s cries were barely audible, breastfeeding was a challenge and she had to be fed through a dropper as she could not nurse properly (the muscles of her mouth were too weak to suck). At 3 months of age, her muscles were like jelly, she could not hold herself up at all. After going through a few doctors, both in Egypt and Lebanon (Rola’s husband’s native country), some of whom incorrectly diagnosed Tala, they were urged by one of them to conduct a chromosomal testing procedure. The results of the analysis revealed that Tala had a rare chromosomal disorder in Chromosome 9. It is so rare, in fact, that it doesn’t even have a name. Doctors in Egypt, Lebanon, the United States and even Europe were stumped. They didn’t know how to go about treating it or whether it was degenerative or not as there were no previously published studies or literature on the disorder. They had never seen anything like it and even had Rola sign a consent form to allow them to study Tala and her disorder.
Over time, the symptoms of the disorder became apparent: extreme weakness in the muscles and joints to the point where Tala could not walk even as she grew older; difficulty blinking her eyes when she was first born, because her eyelid muscles were so weak; an inability to feel pain due to the nerve endings being completely unreceptive to outside stimuli; an inability to recognize her body in space in relation to other objects or even assess distance; a lack of two hand function (mirror image function only); a lack of reflex action, and the list goes on.
After searching for a whole year for good physiotherapy centers, Rola finally found one that she was comfortable with. Due to the severity of the disorder, however, Tala required not only physical therapy (which targeted gross motor skills, like walking, jumping, throwing a ball etc) but also occupational therapy (OT) for hand movements, fingers, mouth muscles; speech therapy; and cognitive therapy. Some things have improved over time, such as the inability to feel pain. Due to a special brushing technique using a specific brush to stimulate nerve endings, Tala is now able to experience sensory processing. Her eye muscles also grew stronger and she can now blink her eyes. She is able to walk, even though her knees are not completely stretched out, and she is able to interact, albeit within a limited capacity.
Rola documented all of the symptoms, the setbacks and progress by taking notes of everything. She found her solace in writing down not only observations but also reflections and thoughts on disabilities in children in general. Eventually, she started a blog, and a Facebook page, “Mother of a Challenged Kid” as a way to spread awareness about children with special needs in Egypt. She says, “You don’t see challenged children in Egypt. So there’s no incentive to find a cure. If you don’t see a problem, you will not start to look for solutions.” Rola also bemoaned the lack of facilities for people with special needs in Egypt. But again she attributed this to the fact that they were largely hidden, unseen. In the deeply misogynistic Middle Eastern culture, it is considered shameful (especially for men) to admit that they fathered children with special needs, an erosion of their manhood. Therefore, their presence, their very existence was often shrouded in secrecy. They were either hidden from plain sight, or thrown in wildly inadequate and ill-equipped institutions where caregivers were often at a loss as to how to even communicate with them.
Through her blog, Rola hopes to remove the stigma surrounding people with special needs, and especially children, and dreams of the day when they are fully integrated into the Egyptian society. When asked about what she would like to say to mothers of children with special needs, she pleaded, “Live normally. It’s difficult and stressful. But don’t hide the child at home or drown them in therapy. Forget that they are different if only for a few hours and let them live their childhoods.” She admits that even though Tala’s different therapy sessions are like a full-time job, 5 days a week, 8 hours a day, she makes sure to skip a few sessions every now and then and take her out, either to the park or a friend’s house or the nursery.
Another argument for making them more visible, she explains, is that while some are extremely talented and society can actually benefit from them (indeed some of them grow up to be notable artists, musicians etc), all are exceptionally affectionate and they can sense the affection or lack thereof, in other people. Rola recalls that in the center that Tala goes to for physical therapy, all the children are placed in a room together for their sessions (in a sort of group therapy) as they encourage and cheer each other on. The older kids eventually start caring for the younger kids. They benefit more from each other’s company than if the session was conducted in a room with just the child and the doctor. Therefore, integrating children with special needs fully into society and allowing them to interact with other children aids in the betterment of society in that all children (challenged or not) are taught the value of tolerance and diversity by recognizing and embracing the unique and fundamental differences between human beings. “For what greater difference can there be,” she asks, “than the difference between someone who can walk and someone who can’t, or someone who can blink their eyes and someone who can’t?” Once children are taught to accept such differences, even celebrate them, then religious, cultural and political barriers simply disappear. Ultimately, isn’t that one of the best indicators of a truly inclusive and compassionate society?
As much as I applaud Rola for her unwavering strength, I believe it is Tala who is the hero of this story. Disability is heartbreaking at any age, but when a baby is born and cannot even blink her eyes, and grows up into a toddler who can’t walk or even hold herself up in a chair, it is that resilience that we must honor. But then again, Tala doesn’t yet know how deliberately cruel the world can be, she doesn’t know the meaning of limitation. And what we may think of as a disability she may simply regard as the norm. Which is perhaps what keeps her moving forward. She doesn’t believe she has any other choice but to keep fighting.
Yes, there were moments when despair threatened to destroy Rola’s carefully curated reserves of hope and strength, for instance, whenever she would hear other mothers discussing future plans for their children’s schools (while Tala’s future in terms of schooling remained unclear or non-existent). But then she would remember that Tala fought for everything that she has. “She didn’t give up. All those children at the center with her didn’t give up. So why should I give up?” she says, impassioned.
When I asked Rola what she learnt from her experiences, she replied, “I’ve learnt that if Tala can walk, defying all her doctor’s expectations, then impossible is nothing.” She also learnt patience, gratitude for every living moment, for everything, and that she dare not take anything for granted. She recalls how Tala used to rub her eyelids so vigorously until she drew blood, in an attempt to moisten them because they were so dry. Doctors told her that Tala’s eye muscles were so weak that one day she will either close her eyes and never open them again or open them and never close them. Either way, she will go blind. Simple words describing a situation that almost defeats language.
Yet such an experience also served to pull everything into sharp perspective for Rola. “It’s not that you become stronger,” she muses, “so much as your problems become smaller and more trivial.”
So what does Rola, a woman ennobled by her daughter’s resilience and perseverance, hope her blog will achieve? She responds that, perhaps, it will have a ripple effect and someone will start to take notice and raise awareness for kids with special needs. Awareness needs to come from the media and campaigns and destigmatizing and removing the taboo surrounding children with special needs in Egypt and the Arab world, in general. But it also starts with us, with the individual. We are privileged to live in an age where information is easily accessible. Rola implores mothers to read, do their research, ask questions, educate themselves about children with special needs, spend meaningful quality time with their children but also observe everything and write it down. “No one will fight harder for your child, no doctor, or therapist will be as invested in their well-being or spend as much time with your child as you will.” So make it count.
The real purpose behind her blog and its raison d’etre is to encourage people to share and communicate. Living with a challenge or caring for someone who is challenged can be lonely and alienating. So talk about it to your family, friends, spouses, coworkers. But mostly talk to each other. About everything: the good, the bad, the heartbreaking defeats, the joyful victories, the crushing despair, and the pockets of hope. Create support groups. Build a tribe, a community where parents can get as much support as the children themselves. That’s how you acknowledge a problem, accept your reality and work around it. That’s when hope creeps in, moment by moment, until you realize you are no longer alone.
It was only after Rola opened up about her struggles and shared her darkest thoughts and deepest fears that she got the support that she needed: from family, friends, her boss at work, and people from all over the world who reached out to her to share their stories. But, by and far, she credits her husband as being her staunchest supporter, who went over and above the call of duty, not simply as a father, but as a true partner in life whom she was able to consistently count on to share the burden with. Such is the immense power of love, family and community. As she remarks, “All we have is each other. If Ali and I are not happy, then Tala won’t be either.”
So this is the story of a family that found peace and strength in the struggles of one incredible little girl who fought unimaginable odds for every little victory that the rest of us take for granted. But it is also the story of every other family with similar circumstances, and the story of children with special needs in Egypt and beyond, who exemplify the human condition in all of its contrasts: crippling physical frailty coupled with indomitable strength of spirit. So, if you take nothing else away from the story, remember this truth: No one makes it alone in this world. We all need each other; disabled or not, we all learn from each other. That’s what it means to be human.