When Lightning Strikes

Lightning, a tremendous spark of electricity that occurs between clouds, air or ground; it sets off a magnificent photographic flash that floods the sky. It’s picture perfect with absolutely no competition for a man-made flash. The saying goes: “Lightning never strikes the same place twice”.  Metaphorically, this means that it is unlikely that an unexpected event will happen again. I strongly disagree with this saying. Our lives have been a series of unexpected lightning strikes hitting the same spot over again with a different outcome each time. She came with a Superbolt lightning strike and changed the course of our lives, Alhamdulillah (All praise is due to God).

This past year has been the first time in years that we have managed to keep Zahraa (10) at home without one hospital stay, Alhamdulillah. Just this time last year, we were told it could possibly be the end, in a chilling chain of almost ends. She has been sick since her last hospital stay, but we were able to keep her home, Alhamdulillah. It’s been almost a year, and I can still hear the hissing of the high-flow machine as it breathed oxygen into her lungs. I can still remember the piercing sites of the drips. I remember her burning fever and strained chest rising and falling; challenging gravity.

   

Lightning struck, as it had many times in the past. She proved to the machine that it could pull back little by little and give the encouragement for her lungs to breathe on their own. Each day, her fighting sword remained drawn, armed with medicine potions, until she could breathe on her own again. Her sister (8) and brother (6) visited every day without being able to see her but finally when that moment arrived, they had found their gold at the end of the rainbow. Hugs and kisses condensed their atmosphere and for that moment in time, only they existed.

   

Few people consider the impact a child with medical and special needs have on the siblings of that child. People tend to think it’s isolated to their parents only. Reality is that the needs of that child intertwine with the needs of the other children. Sometimes her needs over-flood theirs and a storm cloud brews.  No one likes to feel unheard, unloved and under- appreciated. It’s our greatest challenge, as parents, to create a balance within the home so that all children feel heard, loved and appreciated. Lightning flashes across our skies when we see our children rush to Zahraa when she’s sick and try to comfort her; they calmly lie next to her and place a firm hand on her chest when her seizures begin; and they snuggle next to her with a book to take her with on their literary adventures.

Zaynab will change her voice’s intonation as she gets into character; speeding up as the characters run, swim or save the day. Zahraa knows every page of every book she’s read. She knows when those characters were happy, sad and excited. As Zaynab shares her hobby with Zahraa, Zaynab’s smile beams on her face; a world of imagination where sisters connect. Flashes of lightning stir.

As a parent, observing both children with Zahraa, we can see that they are growing up with so much empathy and kind understanding, Alhamdulillah.  Even without asking, there are times, they would recognise that their sister’s needs supersede their own and they voluntarily give into her. Of course, there are times that their own storm cloud pours and, as parents, we comfort them and cheer them on. Just as their sister came in on a superbolt of lightning, they brought the storm and thunder. They are equally important, and to the best of our ability, we have to remind them of how cherished they are.

One day, Zakariyya asked me if Zahraa would be the same as she is on earth in Jannah (Heaven).  I was puzzled and asked why he asked. He proceeded to say that he wanted her to be exactly the way she is now on earth. I asked him, “Wouldn’t you want her to run around and play with you in Jannah?” He replied, “No, Mom. Who will I snuggle with in Jannah?” He continued, if Allah (God) will give us anything we want in Jannah, he would like a red dragon and he would like Zahraa, Zaynab and he to fly in the skies of Jannah. Flashes of lightning in my heart strike again.

Our children are each other’s best friends, but even best friends collide. When this happens they cosy up to Zahraa and declare, “She’s my sister!” This back and forth will continue until a truce is called. They will cover the blanket over all three of their faces (Zahraa in the middle) and hide away from bandits and monsters approaching them. Then they will bravely defeat their enemies. When the game is over and they look over to their sister, she’s sound asleep. Their chaotic, slaying voices are the calm in her storm. They love her just the way she is. Some experiences only exist between siblings. We hope that one day they would have benefitted from being part of our perfect storm.

Not everyone understands our storm and that’s okay. Not everyone has to. Not everyone needs to have empathy and show kindness. Why do they have to? Sometimes we can all get ahead of ourselves and think that kindness, understanding and respect are innate to humans but this is not the case. When we’re out at a mall (which is a milestone for us) we’re masked (indoors) and Zahraa’s buggy has a cover on; it’s the only way we can try to protect her lungs from getting sick and, at the same time, facilitate us getting out of the house.

Staring without smiles are usually the order of the day and the most common question is, "Why are you wearing a mask? Don’t you know Covid is over?" No, we live under a rock and are ill-informed about the happenings in the world, we do however, prefer filtered air if you must know.  I’ve learned that if you don’t know, don’t act like you know and if you would like to know, kindly ask. Making an assumption about a stranger’s life and what they are going through only ill-equips you with an assumption and not raw reality. 

Some time ago, we went to a park. A little boy was quite curious about Zahraa. He slowly etched closer from the merry-go-round to the jungle gym. We were standing on the open space close to the jungle gym. He stopped and stared. His mother approached him with a baby in her arms and he whispered softly in her ear. She turned to look at me and smiled, “Hi, my son would like to know why she is in a buggy?” She followed with, “He is Autistic and curious about your child.” My own facial expression softened, recognising the respectful approach in the question from another mom facing her own special journey with her son.

I explained that she could not talk or walk, that’s why she needed the buggy. He was so intrigued with Zahraa that he didn’t need his mom to ask the next question. “How does she eat?” He asked. I replied by explaining that she has a feeding tube which means that we push her blended food through a tube with a syringe to feed her which is connected to her tummy. He came closer to Zahraa. At this point, Zaynab and Zakariyya were taken in with the interest in their sister. His mother and I had a brief discussion about Autism and how it impacted her son’s life and their lives. The boy, however, kept his eyes on Zahraa and asked more and more questions about her. His mother eventually said it was time to leave. He was reluctant to leave. His mother then turned to me and said, “I think he recognises something of himself in your daughter.”  We parted ways with smiles on our faces.

Parents that endure similar storms try to connect with each other; we almost try to hold out a rescue rope to help support each other. When one lets go, we reach out our hands to grab the other tightly and strengthen their grip. Sometimes our storms are too big and letting go for a while is the only option. The clouds will eventually part, the rainbow will appear and the sun will shine, Insha Allah (God-willing). 

We’ve lost loved ones along the way (like everyone has), and we’ve missed out on moments that we can never be part of. The best we can do is make the most of the present in times of her health. It seems unfair that we can’t always be part of memories of friends and family.  Just like there’s no way to stop an approaching thunderstorm, we can’t change the condition of her fragile lungs.  We will try our best to protect her and her siblings and put our trust in the Almighty.

There are so many families with far greater storms than we will ever endure. Parents with children like Zahraa in war-torn and poverty- stricken countries that under-go far greater difficulties, yet they trudge forward with faith in their hearts. The winds of their storms beat so fiercely, it seeks to drown them out. May Allah (God) grant ease for all those facing these immense storms and open the skies for them. Ameen (Amen).

If your superbolt and flashes have passed moons ago; always remember that even the silvery stars in the night’s sky have left a long time ago but their light remains long after they are gone; their diamonds during and after your storms should always be a reminder to you that their flickering flashes positively changed your life forever. One day (God-willing, far away) we hope to gaze upon the stars and hold our umbrellas up to the sky with faith in our hearts, Insha Allah (God-willing). 

Lightning, a tremendous spark of electricity that occurs between clouds, air or ground; it sets off a magnificent photographic flash that floods the sky; there is so much hope tattooed in its flash.  Lightning struck with the addition of each of our children; lightning struck way more than twice in the same place, in the same hearts. Lightning strikes within our challenges and then again when overcoming them. Your lightning flashes may look different to ours, your Superbolt may be different to ours, as long as you keep your eyes toward the skies; always know that the clouds will part, the rainbow will appear and the sun will shine, Insha Allah (God-willing).