As we are...: December 2020

We can’t imagine our lives without her. From birth, she demanded that we pay attention. Major life lessons were about to begin and she would be our greatest teacher. True strength and bravery hide where we least expect it. It urges us to step up and match the bar she sets so admiringly high. Just when we think we’ve reached the next level, she moves it ever so slightly. As if to say: just a little bit further. It’s like climbing a long ladder, some steps we climb one at a time, others are two steps apart and some; we slide a few steps down.

When Zahraa was in the NICU, that time we thought she was coming home but she was actually getting sick again; before her lung collapse; I remember these parents had brought their baby in for a quick procedure. I held Zahraa in my arms and I could see that she was weaker. The mother looked excitedly at me and said; “I’ve been where you are... a whole 25 days.” I smiled at her. The nurse nearby, overhearing the conversation, looked at me and responded: “Tell her how many days you are here.” At that point: “90-something.” The mother never spoke or made eye contact with me again.

Some days passed and another mother was understandably anxious about leaving her baby overnight and was expressing her concern to the nurse. Again I was asked, “How many days are you here with your baby?” At that point: “113 days.” That mother didn’t speak or make eye contact with me again. It was at this point that I began to understand that this journey that we were on has different levels. People with similar journeys shared almost, but not quite, mirrored feelings on their experiences. Preemie parents whose babies were born with a very low birth weight and whose babies came earlier and whose journeys were tougher and longer could share certain high’s and low’s. Then for some of us, where the journey extended beyond the NICU, we had to work harder to gain a greater understanding for the next level.

These levels armed us with gratitude for the different stages of these levels. Looking at other special needs children with tougher struggles motivated us to be even more thankful for the “good days”, the “bad days” and the “days in-between”. Zahraa has a severe global disability, where she is unable to talk, sit, walk and she is unable to voluntarily bring her hands to her face. Her trusty feeding tube provides much needed nutrition for her body. Then there are special needs children who have the same challenges as she has and more; they require constant or added oxygen support and/ or have a tracheostomy and /or an ileostomy. Even if I wanted to say I understood those parents’ trying journeys, words would fail me because I fall incredibly short.

An umbrella of special needs children and parents of those children exist, some children present with a physical and neurological disability; and some children only present with a neurological disability but no physical disability. Each special needs child, their parents and family are uniquely different and we respond differently to our children’s needs. I have learned that this is totally okay. It doesn’t mean that one special needs child’s journey is more important than another’s but it enables us to learn golden lessons from each other.

Zahraa’s global disability doesn’t define who she is, although outsiders’ eyes would argue differently. Many onlookers think that Zahraa is unable to hear or understand the words that they utter and therefore dare to ask if we are satisfied or happy with her. They tend to say “shame” and mention that she is somehow “suffering”; as though our best effort to provide her with the best quality of life is lost. Individuals tend to talk about her in third person as if her meaningful existence is not even there. Imagine being spoken “about” and not “to”; imagine acknowledging everyone else in the room except “you”. When people crane their necks around to look at her, without so much as to crease a smile on their faces, and I wonder had that been “you”, would “you” like it? I wonder if her response was brightly tattooed across the sky, for all to see, would you still speak your meaningless words?

Yes, Zahraa has many challenges. We are privileged that she was placed in our trusty care. Alhamdulillah (All praise is due to God). Yes, Zahraa requires a lot of care. But what shaded eyes do not see is the progress she makes that they will never see. Like holding up her head a little longer, making meaningful eye contact and response and her hands opening without struggle. But none of this matters, because all anyone is interested in: Will she walk? Will she talk? Can you understand her? – It’s as if this criteria defines the success of one’s existence. Her disability doesn’t make her less than or incomplete. It just means we have to climb the ladder with and for her. All ladders are aimed at the sky anyway; the speed of the climb is irrelevant. The quality of the climb is all that matters.

Hurtful words burn the most when they are spoken by blood and from those that we equate quite close to it. When it’s suggested that only two of our children be included for bonding time and Zahraa stays home, those words are fire. It leaves behind fields of burnt grass awaiting restoration. Even when someone says “I don’t mean to offend you” and the words are nothing but offensive; it doesn’t make what was said any less hurtful and offensive. The fire flares up and what’s left behind is damaged.

This year marked a change for the entire world as a pandemic crept from country-to-country. As lockdown hit from city-to-city, we too crawled back into the safety of our home. A see-through virus threatened and still threatens a select group of people who are more at risk. More people started practicing hand-washing, sanitising and; in part, social-distancing. We observed as more people around us began to feel the pressures of isolation. We further observed more and more people living our normal life; lockdown style, just for this period of time. There is no “sacrifice” when we protect those we love because our actions are their shiny shields of safety. To paint some perspective; a simple cold rattles her lungs with an extended recovery time. Any threat provokes an armed response from us to protect her.

As a parent of a child with special and medical needs, we research a lot. I came across a few readings describing just how isolated parents of children with special needs can feel. Keeping in mind, we have 2 other neurotypical children; I’ve found that people are awkward and uncomfortable when asking about Zahraa. People speedily rush through listening about Zahraa and her story just to listen about the 2 other “normal” children. It’s more comfortable and relatable for them. To them, we’re “used to” Zahraa getting sick, not feeling well, or being hospitalised. I’m baffled as to how “used to” any parent would feel each time their child was unwell.

Throughout the day, either I would initiate it or Zaynab would, “Mom, I love you!” she would beam. I would always respond, “I love you, more!” When she expresses her feelings towards her sister she would always say, “I love you, Zahraa.” I would always respond, “She loves you, more!” One evening, I expressed to Zahraa how proud I was of her; that she so brave for always fighting through her different challenges. Zaynab was playing on the bed behind me. I wasn’t even vaguely aware that she was listening to me. I leaned in to Zahraa’s ear and said, “I love you, Zahraa.” It was as if I had just blinked and Zaynab was beside Zahraa, “She loves you, more!” Zaynab beamed. My heart burst as my eyes watered up. It was as if she knew in that moment that those words were supposed to escape Zahraa’s mouth.

When it’s bath time and Zahraa is submerged into the water, Zaynab hangs around to prop the water with toys to entertain her sister. She carefully watches as Zahraa’s body safely makes contact with the water and like clockwork always says: “Mom, don’t let her fall.” My reply is, as always, “Never.” Zahraa’s bath time gets tricky when seizures occur during these times. Her body shakes and then stiffens as the brain over-rides her movement. In these moments, my foot is stuck on the same rung on the ladder. A sturdy rope that is attached to a heavy boulder pulls it down. In these moments, the fierce fight of just trying to stay onto the same rung would be enough.

It would be a cushy cliché for me to state that my child’s needs reflect what every other child's needs are. This is simply not true for her. If we were to go on the idea that every child needs love, care, respect, protection and kindness – then yes, this would be true – not just for her but for ALL children. However, my child’s needs extend far beyond the needs of other healthy neurotypical children. She will ALWAYS need to be taken care of. Insha Allah (God-willing) we will ALWAYS have that honour for as long as she needs us. I see my other children step forward to comfort her when she’s unwell, to kiss her cheek and to hug her body. Zaynab, at times, would try to wrap Zahraa’s arms around her shoulders to feel her sisterly embrace. Zakariyya won’t stop kissing her cheek as he waits for her to respond. Then it happens.

Just.

One.

Smile.

This smile transforms into the best hug and kiss as she rewards their efforts. Two steps up as the climb, in these moments, seem non-existent.

I’ve learnt that wisdom doesn’t always come with age. Just because you’re older doesn’t necessarily mean that you’re wiser. Different journeys define wisdom and character. Some people learn this early on. Whilst learning about how to properly care for Zahraa’s stoma site, we met an 11 year old girl from a township. She was being reminded, from a nurse, on how to properly flush her bowels and with which catheter. This girl was so graceful and mature beyond what most girls her age had to be. She was a step of courage we needed on our journey.

Sharing hospital rooms with children and parents with special needs children can be challenging at times. Some parents bring their children in for much needed procedures and some children are sick and need to spend the night in hospital. These parents find that their patience gets beaten hair thin when they and their child need to share a room with a parent with a child with special needs. To the best of our ability, we understand that every child’s stay and healing is important. We, as special needs parents do not deliberately go out of our way to make the stay unpleasant. Loud noises and bright lights set off my child’s seizures at night, it wasn’t that I requested for the light to be shut off because I wanted to end a little girl’s fun. “But, I’m not sleepy,” I heard her whisper. As soft as breath, I responded, “I’m sorry.” When the music playing to distract a child is too loud and my child is finally falling asleep and I hesitantly ask, “Can you please lower your volume?” The room feels colder. The special needs child who arrives weekly for his transfusions seems to be having a bad day and appears out of sorts; parents voice that their child needs rest. They ignore the red flush on his mother’s cheeks and her tears trace down behind the drawn curtain.

We don’t genuinely go out of our way to inconvenience any child from a speedy recovery. Our cheeks can blush, but that’s about it. It doesn’t change our child’s diagnosis. For some children, they are hospitalised often, some are further between but for a child like my own; just because she isn’t in hospital, doesn’t mean that her other medical needs aren’t being met at home. It just so happens on the day that a procedure happens for your child that our child is there. We plan for good days whenever hospital days occur but we cannot guarantee it. Please try to kindly understand this.

So, whilst I strap sturdy shoes on for our other children, I secure splints on our Fighter-Girl’s feet. Whilst our other children enjoy rides on their toy motorbikes, Zahraa enjoys her strolls in her buggy. Whilst our other children run and enjoy playing chase, Zahraa gains more equipment to assist with her body remaining supple and in good function. Whilst my other children explore new food tastes and textures, we rely on her feeding tube. To bring Zahraa onto her feet, she needs knee immobilisers and splints. She stands tall as her brother and sister draw close and cash in on their group hugs.

All children do not have an equal footing in life. For some children, the start of their climb was not always from the first step. Some children are blessed with superb health from birth, Alhamdullillah (All praise is due to God). Some children are lucky to have both living parents; and some have parents who are financially well off. Then, some children begin from the ground; some children courageously battle cancer or other life-threatening diseases, some children have one or no parents; and some are very poor. In a war-stricken country, in a different circumstance – our story, her story would be so different. We are all climbing together, but we are not all on the same level. Some might climb faster, some might rise slower, but we steadily progress. We are beyond blessed and thankful to have access to her awesome paediatrician and team of doctors/surgeons, therapists and dietician to be on this remarkable journey with us.

On our climb with our Fighter-Girl, we have learned amazing things about the human body we never thought we’d need to know. I remember the first of many EEG’s and following the tracing of the waves coming from her brain on the screen. I remember the different tests for her reflux problems and watching as her gut glowed as the test tried to track the problem. I remember having to learn (from her wonderful physiotherapist) how to execute her exercises properly so that it would be of benefit to her. I’ve discovered equipment I never knew existed. I’ve learned so much about food and food groups; Zahraa’s gut struggled for a while to tolerate her feeds and we then decided to try a blended diet via her feeding tube.

We were so anxious and didn’t know what to expect. Her gut seemed to tolerate the change until it didn’t. This part of her climb has been tricky but she has steadily progressed. Zahraa’s removal of her tonsil and adenoids was supposed to be a speedy overnight stay but resulted in a five day hospital stay with oxygen support. Alhamdulillah (All praise is due to God), she is breathing better since that procedure. There are times when Zahraa’s fever burns and her chest rattles and she cries and we cannot figure out what the cause is. Sometimes, it’s overwhelming when all we want to do is make her feel better in these moments. Like any parent would like to comfort their unsettled child.

As our six year old Fighter-Girl goes for yet another procedure of muscle relaxer injections, a procedure that she’ll need at different times throughout the year and is injected into different muscles in her body, we direct our eyes towards the skies. Insha Allah (God-willing), it’ll keep making a difference in her progress. These muscle relaxer injections assist in paralysing the muscles to assist with ease of movement and prevent contractures. The climb may be rough at times, happy at times, sad at times but we are so grateful for all of the time we get to spend with her and her siblings. There are times that acts of kindness start knitting us together again; when someone genuinely asks and is interested if she is okay; when someone takes interest in a suitable gift for her and her abilities; when someone graciously gifted her with life-changing equipment; and when someone speaks to her and not about her.

When someone includes her.