When She Smiles

It has been five years since my waters prematurely broke and I can still feel the frantic beating of my heart banging inside my chest and my tears tracing down my cheeks. At the time, I was scared. I was scared that the Almighty was going to call her back before I had even gotten a chance to see her; to touch her; and to press a kiss against her precious head. I was scared that the life with her that I had so vividly imagined would be taken away before I could tell her face-to-face that I had loved her from the moment I saw those two lines spread in the window on the pregnancy test. Husband and I had no idea how she was going to change our lives. We didn’t know that she would bring her special force and challenge us for a special cause. It was only later that our Fighter-Girl would teach us that there was nothing to be scared of to begin with.

With going forward, we have to take a moment to pause and look back so we can see just how incredibly far we have come. We have to celebrate the “good” days and the “not-so-good” days. We learn that being grateful for both of these days and the days “in-between” becomes the game changer. We look back and remember Zahraa’s lengthy hospital stay in the NICU. We remember a time when, as a newborn and beyond, machines breathed for her. We recall just two weeks after birth; she became extremely ill; multiple infections, multi-organ failure and lack of oxygen to the brain which resulted in her brain injury.  We remember her first operation on her fragile body. We recall countless of times death’s breath waiting for her to exhale. We recall she FOUGHT. Her mighty sword waged a war and she declared victory when she came home with us for the first time. Alhamdulillah (All praise is due to God).

We think about her first seizures (Infantile Spasms) and the hectic medication she needed to stop it. We recall her happily welcoming her sister, Zaynab. We remember how Zahraa cheered Zaynab on as she too fought 5 days after birth with a hole in her stomach and needed life-saving surgery. Then Zaynab rooted for Zahraa when her GERD needed intervention and her swallow reflex had begun to fade and it was time for her PEG and stoma care. We recall the “other” hospital stays when Zahraa battled RSV or pneumonia on more than one occasion. Her eye surgery saw her through another sparring fight. If anything that remained constant throughout all of these times, it has been her bravery and Fighter-Girl spirit. When Zahraa cries, it’s a red flag that she is in a lot of pain and discomfort. She cannot signal where the pain is and what hurts; this is when our raw red hearts feel like it is directly receiving lashes to it. As she cries louder, the lash cuts deeper than the one before it. In these moments, it is our duty to try and figure out where the source of the pain is; sometimes we are lucky and other times; we are sadly defeated.

When Zahraa was nearly three and a half years old, we learned that one of Zahraa’s hips had completely dislocated. There were and are many times that her muscles throughout her body would stiffen and become quite spastic. In this particular time, the muscle had become so spastic that it ripped the femur bone out of the pelvis. We didn’t see it coming. It felt like bricks were raining down from the sky and we were completely crumbled and crushed. I completed her daily exercises with her and she (within her capacity) was thriving. She stood for periods of time in a standing frame her grandfather had awesomely built and, after a very long time, she was finally able to start lifting her head up by herself. Those bricks were smashing around us as we realised Zahraa needed major surgery again.  It was also about this time that we bless fully discovered that she and Zaynab’s baby brother was on the way.

After Zahraa’s surgery, I was advised to get someone to assist me in lifting her because the cast and her weight combined would be considerably heavier. Because I was expecting, the help was encouraged to safeguard her unborn brother. The first cast extended from her hips all the way up to her chest. From her hips, it went down her left leg including her foot. A stick went across, meeting the remaining part of the cast just above her knee. The cast challenged Zahraa; it pushed us to further our care expertise for her. Just after discharge, our Fighter-Girl was readmitted for a bad tummy bug. Cast and all. We crash-coursed learning how to change her nappy without the sticky bits on the sides as the nappy had to be gently tucked into the cast. Failure to do so properly would result in the runny tummy in the cast and everywhere else.

More blood needed. Oxygen required. Back home. Alhamdulillah (All praise is due to God). Crash course continued as we learnt that Zahraa needed to change positions at regular intervals to prevent pressure sores from developing. Without our knowledge, the first nasty one had developed. She had to wear her splint on the other foot that wasn’t included in the cast. We learnt quickly how to take care of this pressure sore. Bed baths around the cast had begun. A square window was cut out within the cast to allow us access to Zahraa’s PEG so feeds could continue uninterrupted.

One morning, a loud POP came from her belly whilst I ran her feed. Something had gone wrong, and the milky contents of her stomach emerged from her stoma. It spilled into the sides of the cast. Husband and I worked meticulously to clean the cast, changed her Mic-key and tried to get her comfortable again. Night time has always been and still is the hardest for our Fighter-Girl; her muscle spasms and her body stiffens the most during these starry hours. She cried and screamed as her muscles fought against her. Lash after lash, our red hearts endured with her. 

Then the next cast needed to begin its work. The cast started at the top of both of her thighs and extended all the way down to her ankles, held together by a stick in the middle. The pressure sore had healed. Alhamdulillah (All praise is due to God). After completing Zahraa’s bed bath and cares, I noticed yellow oozing out at the bottom of the cast. At the Emergency Room we found out that another nasty pressure sore had developed; this one creeping into the layers of the skin. Zahraa’s muscles were contracting so much, against her will, that it caused the skin to break down. Admitted to hospital. Using the skills we had just acquired, we tackled the wound and it healed. Alhamdulillah (All praise is due to God). Zahraa’s skin is so extraordinarily soft and sensitive; it reddens and bruises very easily. Because of this, it made casting Zahraa tricky and scary, it left us with our hearts trapped against our rib cages throughout its duration.

After almost 3 months, when the casts came off, Zahraa’s muscle tissue that I had worked on, with her, through exercises (guided by her awesome physiotherapist) had faded away. Rebuilding and Rehabilitation had begun. The first few weight-bearing exercises brought screaming and gushing tears down her cheeks. Brick by brick, she tried harder. Her time standing in her frame improved and Zaynab cheered her on. “Lift your head, Za-HAA!” and finished it with, “Good Job!” At this time, their brother decided to make an entrance. Emergency caesarean. Baby was fine, breathed on his own and became our experience of a “take-home” baby. Alhamdulillah (All praise is due to God).

As Zakariyya grew older, he discovered that he could water Zahraa with kisses across her cheeks, much like Zaynab did. Zahraa adores kisses; especially these soft sibling kisses. Her smile would tease across her lips and then they would take complete ownership of her face. She would beam so brightly. Zaynab demanded that Zahraa listen attentively to her incredible story-telling. She even showed her the bright pictures and would say, raising her intonation; “See, Za-HAA?” When sound goes quiet, Zaynab would peacefully sit next to Zahraa’s seat on the floor and gently lay her head on Zahraa’s lap. Zakariyya, when he thinks no one is watching, would sneakily make his way to Zahraa and muster up his balance and give endless wet kisses to her already watered garden. Her smile becomes our smile.

When Zahraa smiles it commands our attention; because her first smile was when she turned a year and 2 months old and because she doesn’t smile or laugh when she is very sick, her smile and laughter will always be a big deal to us. One night we noticed that Zahraa’s smiles and laughter were not a source of joy. Something was happening and, at first, we didn’t understand it. In that moment, Zahraa had begun laughing hysterically to a point where she was struggling to breathe. She began to moan in-between breaths, begging for it to stop, as her eyes flashed side-to-side. Loud noises, bright lights and even her breathing would set it off once it had started. Eventually her laughter turned into sharp scream-cries. Her body began shaking and then she would become so still. As our hearts punched our ribs, I panicked as I tried to quieten my own breathing in search of hers.

We soon discovered that these laughing spells were seizure-related and it needed to be controlled. Medication changes, further testing, oxygen needed and more medication changes and an improvement emerged. Now, when people talk to her and she gazes at them and they insist that she “smiles”, our bodies stiffen. If she isn’t smiling in response to the interaction, the insistence “to smile” should cease and talking to her about anything and everything else should continue. Even though this seizure activity (in addition to her daily seizure activity) has decided to hang around, we (as her parents) know the difference. Kisses and cuddles are her favourites and stimulates cheeky smiles. Alhamdulillah (All praise is due to God). We would never have imagined that a precious smile, a sign of joy, could mean pain and discomfort for our Fighter-Girl. We selfishly hold on tight to the smiles of the “good” days, the “bad” days and the days “in-between”.

We are so grateful to the God-sent team of doctors who are so caring towards our Fighter-Girl. Her absolute, awesome paediatrician endures countless of questions from us phrased in different ways at different times and meets us with a kindness-coated wit and honesty. Her wonderful surgeons encourage thoughtful discussions before the course of action. Meeting the nursing team at different hospitals. I’ve met some influential nurses (gotten to know them as individuals) that have positively changed some of my views on life. By battling through their own struggles with faith and strength, it encourages me to practice the same.

I’ve met some amazing Super-Moms along the way, too. After Zahraa emerged from another test, another mother of a special needs child was bringing her son in for tests. Her cheeks were flushed as her eyes darted from person to person as her son’s voice became louder and louder. She desperately tried to soothe him to stop the judging eyes from gawking. “Are you okay?” is all I could muster up as oxygen breathed through Zahraa’s nose. And I knew that she knew that I understood. She straightened up her backbone of steel and proceeded to do what she always does. Be there, in her best possible form, for her son.

Parents of children with special needs respond differently to their child’s diagnosis. And that’s okay. When parents of other special needs children try to medically “school” one another it sometimes turns into conflict; in majority of cases no two children are identical in diagnosis and their response to medication and therapies. When parents who don’t have special needs children try to medically “school” a mother or guardian of a special needs child, my heart becomes conflicted. Secret silence is better when I’m “schooled” to school my other so-called normally developing children.  Judging is so second-skin to humans. The working mother, the stay-at-home mother, the you’re never doing enough mother, the you’re wasting your tertiary education by being a stay-at-home mother to be a carer for your child; the woman who wants so desperately to be a mother; and the mother whose loss will forever be hers. Judging is so overrated and its benefits are immensely shallow. We are all just trying to do our best and we pray that our best is enough. That somehow our best changes our children’s lives so that they live up to be their better best.

The first time we eventually made it to smell the salty air of the beach, as a family of five; Zahraa was four years old. We took our children to experience its nearby park. Zahraa wasn’t comfortable and wouldn’t tolerate the swings. Zaynab spun around on a rotating Thing-A-Ma-Jig as, Zakariyya snoozed against my chest. I stood next to Zahraa, as she sat in her buggy, and noticed that a child had left the swings to come and stand right in front of her and stare. The child inspected her from every angle; she didn’t even see my see-through existence. The child’s father sat unmoved watching his child as though nothing was wrong with what his child was doing. It seemed like a good time to leave. The teaching of tolerance and acceptance for different children begin with their parents; their best teachers. Teach kindness and respect, that all of our children matter; make them the top of their class!

Eventually when we do leave the house for some different air, it takes planned preparation and an hour before the hour for the required hour timing. Sometimes the timed effort is longer than the actual outing. Regardless, we’re met with: “leaving so soon?”and “You just got here.” We still have to be watchful of the weather, time of day, sick people present, most importantly; Zahraa’s comfortability and the times her feeds run. So, even when we’ve made it out for a short while, it’s enough for us-for now. Alhamdulillah (All praise is due to God). We still have to listen to thoughtless words that say that they had high hopes for her. When they don’t care about the what and the why we can’t attend certain events. When the refusal to understand that we can’t just get in the car and leave. We can’t just join on vacations. Our time will come, Insha Allah (God-willing). It’s coming, but for now and always, we smile.

Brick by brick, we rebuild. We place our solid trust in Allah’s (God’s) scaffolding to elevate us to reach higher and further with and for Zahraa. Her gut was injured and she couldn’t tolerate her feeds recently.  Change of feeds later, the cement has to set and she trudges forward. Her feet needed to be casted again and she needed muscle relaxer injected to temporarily paralyze the muscles to stop her feet from turning inward; in hope that this will prevent further surgeries. Like before, she screamed as her muscles fought against her. Even though her surgeon heavily padded the cast, the skin had slowly started to break down. The casts were removed in time, Alhamdulillah (All praise is due to God).

Our Fighter-Girl has turned five years old, her splints have become magic as she pushes through, on her good days, with determination to firmly place her feet on the ground in her standing frame. This helps as she boldly tries to lift her head again. This position helps with her ongoing winds in her stomach. After tube feeds, Zahraa still needs to be burped like a newborn. As we cradle her head in our hands, when she sits on our laps and the burp expels, sometimes she dozes off. At night, when her muscles finally release and seizures are at bay, sleep is peace for her. She can’t turn over to change position in her sleep, so we turn her over in turns. Sometimes snuggling up against us in our cosy bed is the best remedy to bring on her deep snoozes. Zaynab joins as she nuzzles up against Zahraa, all cosy and toasty. When these nights are so peaceful, and morning awakes; the sun beams its majestic light across the sky, a genuine smile is spread upon her face as we greet her. 

Our Fighter-Girl armours up for another procedure. Regarded as minor surgery to some but for her the risk of going under anaesthetic is always so alarming because of her sensitive lungs (she’s already been under anaesthetic a few times this year for other procedures). Zahraa has been battling to breathe of late. Picture a thin line that follows from your nose down into to your throat. Erase the connection completely from the nose. Add two boulders in her throat, further thinning that line-that’s what she’s been sitting with to breathe. Insha Allah (God-willing), it's time for her adenoids and tonsils to be removed and we pray this helps her breathe better.

There was nothing to be afraid of; brick by brick her palace expands in the heavens as our Fighter-Girl battles it out on earth. We can only be her firm foundation, and hope that we dig her (and her siblings’) trenches deep.  Insha Allah (God-willing) she will, one day (very far away), spare us a room in her forever home. Her smile is ours every day, without fear; only faith. Fearing a future that we had and still have no control over was never the endgame. Trusting the Grand Architect and Builder was always the lesson.