40 Lessons at 40

Lesson #38

By Venus Souls

This lesson, I would argue, is the most precious gift that has taught me everything I know and live for. It was bestowed upon me in the most profound and loving ways. I’m grateful that the teacher felt I was ready for this lesson.

When I was 5 or 6, I remember seeing a teenager in a wheelchair with what I understand now to be cerebral palsy. He was being pushed around by a nurse while his family and friends were running around him, shouting and screaming in ways that caused him to scream and dribble uncontrollably. I had never seen someone like this before and my automatic reaction was to stare in horror. I could not stop thinking about how awful it must be for someone to be condemned to live like this for the rest of their lives. I could not understand how anyone could cope. My dad tried to explain to me, that he may not know life any differently in order for him to feel like he had missed out on any experience. But I could not shake the feeling of how unfair it seemed to me at the time.

The image of that young man stays with me today, transformed and unrecognisable. It had been a source of horror and inspiration in equal measures. As a young child, I was profoundly touched by what I had seen and felt guilt for being healthy and – relatively – normal, or at least able to do the things I wanted to do without major difficulties or challenges. Yet, I was inspired that despite it all, he seemed to endure. Somehow, at that nimble age, I had enough empathy to realise how difficult it must have been on his parents to have the strength to raise their child.

That night, I prayed with all my heart that God never gives me a child who had any kind of abnormalities. I prayed for ‘normal’ children or none at all. 

“In the flush of love’s light, we dare be brave. And suddenly we see that love costs all we are, and will ever be.”

 

Maya Angelou

Whether you tell Life you can do something or you can’t, it will test you. It will test you to ultimately show you that you can do anything if you have the courage to grow. It will keep testing you until that courage is born within you. 

When my son Nour was born, he was 1.8kg. He was distressed in my womb and had to be delivered by caesarean section one month early. He was the most beautiful tiny thing I had ever laid eyes on. But something terrible happened a few hours after he was delivered.

His blood sugar tested very low and he had to be taken to ICU to be monitored. The ICU was so far away from someone who had a badly stitched cut along her lower abdomen and could not walk 2 steps without stopping to catch her breath. The pain was the worse I’ve ever had to endure until then but it didn’t stop me from going to see him whenever I was allowed to.

One day, one of his attending nurses spelled it out to me without care: “You know he won’t be normal, don’t you? No baby that comes to the ICU ever develops to be normal.” The look on her face told me that she had achieved some level of satisfaction by delivering this message to me in this way. I refused to believe her. I told myself that my child was perfect and nothing would touch him. That I would always protect him no matter what.

But she was right. Nour displayed unusual characteristics growing up that challenged us all. He could not speak until he was 5 with the help of a speech therapist whom I call his guardian angel – she sadly died of cancer a year ago. He was hyperactive and would not sit down or endure holding a pen nor paper for any amount of time. It forced me to get creative with how I could support him with his learning, for no teacher at any school had any clue how to deal with him or had had any experience with his condition before.

While living and working in Dubai, I remember walking into his classroom one day just in time to see his support assistant pick him up and throw him to the floor yelling at him to pick up the piece of paper that he had thrown on the floor in objection. I picked him up, held him tight and took him home never to bring him back to that school again.

At a different school that claimed to be better and charged a ridiculous amount of money for that claim, he spent all his time sitting outside permanently on a chair where he was threatened that if he moved he would not be allowed to play at break time. Nour was 4.

I could write books on the trials and tribulations that Nour and I have endured all these years trying to see a way in pitch darkness and trying to educate his teachers and myself along the way. I had spared no time, money nor energy in finding doctors and specialists to find out anything that could help me understand his behaviour and learning patterns but none seemed to know due to his uneven profile. In fact, the only thing I kept hearing was: it cannot be autism.

Sixteen years later, he was diagnosed with autism. The doctor who diagnosed him said: “I can’t believe no one could figure this out. He could have been referred much sooner.”

What do I tell you about the gifts he’s given me and still continues to? Through Nour – which incidentally means ‘the light’ in Arabic – I was given a new set of eyes to view the world with and through it I see nothing but how good the Universe is to us. There are things I would never have done if it weren’t for Nour; things that require tremendous courage, resilience, and dedication. I did not know that Nour was sent to me to challenge me to become the best version of myself. 

Becoming a parent transforms our identities in ways we could never have anticipated. We realise that in order to protect and nurture this gift, we need to become someone else, someone of tremendous valour and heroism. Someone who could be relied upon and trusted. It takes a lot of courage to become the person our children need us to be and if their needs are challenging, then it becomes that more necessary and urgent. Nothing is quite so compelling. At every stage this courage will be tested to elevate us to the next level, if you accept the challenge. After all, a hero will always be on a journey and as long as there are miles left in our journey, there will always be tests, challenges and endless joyous rewards. On my journey, Nour is my mentor; the guide who who takes me to places I never thought I possessed the strength nor power to enter. 

Courage called upon me through my son. Imagine if God had answered my prayer at the age of 5. What a world of goodness I would’ve missed out on. Till my last breathe, I will be eternally grateful for my Light.  

Posted by thesoulsurgeon

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