Wednesday, March 27, 2019

Chill Pill or Kill Bill?


I almost broke my metacarpal bones in a moment of rage the other day. 

Don’t worry, it took me a minute to google that too. They’re the bones of the palm of your hand. 

I banged on a glass window and I swear it felt like everything inside my right hand shattered into powder. I looked at it and pictured all the blood running out between my fingers, pieces of glass comfortably lodged inside my flesh like a frozen sea that had started to break out from inside. 

Actually this feels like my soul right now. Frozen at the top with raging waves trying to erupt into icy deltoid crystals. I have seen the images on Facebook. It is truly beautiful. Ironically, it feels like burning hell. 

But in actuality my right hand didn’t fracture. What did shatter was the inside of my heart. Now don’t Grey Anatomy me. I don’t care whether hearts can disintegrate into powder or not. What I know is that now I walk around feeling like a salt shaker is stuck in my chest. 

To be fair, I am PMSing. But that isn’t just a monthly hormonal outburst. I haven’t had an episode like that in months. Ok. I just called that an episode. I won’t hold it against me. But yes, this hadn’t happened in a long while and I need to get a grip. 

Self control has been an issue in the past few years. Frustration, depression and other kinds of “tions” have made it really difficult to auto regulate. My behavior with my loved ones has suffered the most because somehow I manage to pretend quite easily with strangers. And when I can’t, I just shut down anyway so nothing really happens. 

But getting physical. It was glass, granted. I did not break anyone’s nose or dislocated someone’s shoulder. Maybe I should. Nah. Just kidding. Nothing is worth going to jail for. Not a Lebanese jail at least. 

So I need to chill because I can’t go around breaking glass or my metacarpal bones. I can’t afford paying for stuff, much less for medical care. 

Anything and everything is pissing me off today but I decided to sit down in a busy coffee shop on Hamra street and numb down the anger with the overpowering noise of Beirut’s chaos. And write. It somehow felt more peaceful than sitting by the sea, looking at the Raouche Rock. Cars, pollution, all kinds of smells, rude pedestrians, children selling gum, and the silliest conversations made for a perfect chill pill. 

I am weird, I know. But hey, whatever works.

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Friday, February 22, 2019

One moment in time

Empathy is a tough one. Every human is born with the capacity to understand and feel what others are experiencing. But psychologists agree that putting one's self in another person's shoes is a learned behavior and that innate capacity needs to be developed. It also varies in different situations. Not everyone will feel the same level of empathy towards the same person at the same time. Our personal experiences, histories, relationship to that other person as well as their own histories and what we know of them all play a role in how much and in what way we empathize. 

And sometimes, there are moments in time that are so universal in their intensities that all subjectivity fades away. 

This morning I had to take Jad for a brain MRI. 

He has sleep issues and keeps waking up in the middle of the night. This has been dragging for way too long and we cannot sustain it anymore. Well, actually, he seems to be able to run on four hours of sleep. But Zombie Mommy is on the verge of a breakdown. Actually the whole house is affected and it is causing unnecessary stress and hardships. And even though Jad is functioning on the outside, sleep deprivation is definitely affecting his therapy and learning. He is cranky and less patient and obviously, sleepy most of the time. 

This is common with people on the spectrum. I have read so many posts from families suffering from the same. 

Our neurologist decided to proceed by elimination in order to assess whether in Jad's case the issue is medical or if it is behavioral and consequently, find the right treatment and therapy. 

The first time I went to the radiology floor at the AUBMC was brutal. 

I had to prepare all the insurance documents for pre-approval and I spent some time there. While waiting in line a man in his thirties stood behind me, waiting for his turn to settle his bill. He was talking to a lady, begging her "you know the truth, you have seen these so many times here, tell me the truth" and she eventually answered "it is bad". He proceeded to tell her how he did his research and read the statistics and survival rates were lower than 10% in that case and he burst into tears. A grown man, crumbling like a child in this strange woman's arms. His desperation hit me like a knife in the heart. That man. So tall. Looking healthy and even handsome. He suddenly became as small as my Jad and all I wanted was to hold him. 

I have no idea what the case was but as he was crying, a wheelchair passed by us. On it was a child, maybe 8 years old. His head was shaved and he looked so pale and frail in his hospital gown. Right behind him, on a bed, rolled another child looking like his twin. He stared at me with blank eyes and it hit me: the radiology floor. This is where all the children come for their tumor scans. My heart sank. 

I hate hospitals. I know they save our lives most times. But there is something about death always lurking around in a hospital. The smell. The walls. The people in the waiting rooms. Just waiting. It makes me sick each time. 

Today I walked in determined to be strong. After all, I had been there before and I knew what to expect. 

We prepped Jad and took him to the MRI room and he was the cutest thing in the world. For some reason, he loved it and decided to climb on his own, without anyone prompting or even asking anything of him. He was all smiles and in that instant my heart was finally at peace. 

And then it happened. The anesthesiologist held Jad's head and two technicians grabbed his arms and legs and they put a mask on his face. All he needed were five breaths and he would be asleep but of course it turned into eternal hell in front of me. They were pinning him down and he was fighting the mask, staring at me, begging to be saved. I kept trying to calm him down but it all looked liked a bad movie. His eyes started to roll back and he kept trying to look at me and then he fell asleep in the most horrible way I have ever witnessed a human fall asleep. It was heartbreaking. I cried. The doctors and technicians were absolute angels. They kept reassuring me and even tried to make me laugh by saying we always forget we need to anesthetize the moms first. Clearly, I was not the first one to cry in that room. 

And then I left. I had to get a nurse from the laboratory to come down and take blood samples from Jad, while he was asleep so he wouldn't fight the needles or the IV. We came back and we met  Jad in the recovery room where everything was also a bit of a fight but this time, he was still out so it made things easier. She took so much blood. And when he woke up, he tried several times to remove the IV but we managed. 

My hero, My Jad 

As we waited for him to be completely awake, a child rolled in his wheelchair. Head shaved. Bandage on his chest. He looked grey. His mother was a shadow of a human. She looked at me, nodded and then started to look frantically around the room. She wanted tissues. I directed her to the sink and she hid behind the wall and cried her eyes out. The second her son realized she wasn't by his side anymore, he started crying, calling for her. I swear, I died a little. He was probably 9 but he looked so helpless and afraid. A child calling for his mom in fear and desperation. She came back running and he calmed down instantly. It all took seconds. It felt like hours. A nurse came and talked to him and that boy, so small and so helpless asked "you will make me sleep and I will not feel a thing like my last surgery right?" and I looked at his mom and both of our hearts cried. he had been there before. He had be under the knife before. And there he was, again. How unfair and devastating. I walked to her and she knew I was feeling all of her pain if that was ever possible. I looked at him and told him what a cool mask he had on and what a hero he was for being so strong. He smiled a little while his eyes were screaming "I am not strong, I am so afraid".   

And I turned and cried, with that mom. Silently. Hidden from our children. 

And in that moment I wished so hard for God to exist and miracles to happen. I am not an atheist but this time, I really needed God to be there more than ever and actually do something. To save that boy. To save all the children. 

Life is not fun. 

Humans are so fragile.

And sometimes it just hurts to be alive. 

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Wednesday, April 4, 2018

The Extraordinary Challenge of an Unusual Daredevil

My six year old son, Jad has Autism. 

We have known since he was 15 months. Even though his case is not what I would personally qualify as severe, he remains non-verbal in spite of all the years of speech and other therapies he has bravely tackled. 

These sessions have been imposed by us, his parents, obviously. He has never asked for any of it and I am certain, if he could verbally convey his thoughts, he would probably ask us to leave him be. 

Jad Bou Onk: Not your basic hero

Therapy is hard work. Every session is draining both physically and mentally and yet, Jad makes great efforts to persevere with our demands. 

We are lucky to have found brilliant therapists who are now making these additional mandatory endeavors slightly less exhausting and more fun. Still, I always feel all of this is so unfair to such a young child who does not really know why it is happening to him. 

Let me be clear though: I am grateful for these therapists and their hard work and I know ultimately, Jad is benefiting from all of this. Nonetheless, my softer mommy side cannot help but feel bad for him. 

I also need to be clear on another pivotal truth: we would never try or want to change Jad. He is the most perfect little person just the way he is. I would love to be able to change society though but that is another story. 

Instead, as we stand powerless facing this society which can be ruthless to people like Jad, we work hard to give our son tools that will allow him to find some happiness and contentment when he ventures into this (unsympathetic) world. 

"You may say I'm a dreamer"

My son, that superhero who traded a cape for a glider!

Every year, come April, I try my best to spread some awareness on social media. Families like us, healthcare professionals, therapists, educators and people from all walks of life rally and join forces with one goal: educate. 

It is crucial for us to speak of the fears, challenges, struggles and daily obstacles our loved ones face. It is also important to shed light on the kind of support they require. 

Because every human being deserves to live with dignity. It is a fundamental right and not an issue to be debated.

When we speak of "special needs", the common reaction can be apprehensive. Misconceptions are frightening and they often project people with special needs as a burden on society.

That is the sad truth when we decide to abandon these people to a fate of loneliness and segregation. 

However, if we educate and empower them to become active members of our society, all our expectations shift. If we give them the tools to be able to contribute positively and be independent, they no longer become burdens. They become a valuable asset we can rely on in so many ways. 

Gearing to for an extraordinary adventure

Superheroes do not need capes, a brave heart and a genuine smile will take them beyond our wildest expectations

That is why this year I chose a different angle for Autism Awareness Month. 

Instead of focusing on our struggles and challenges, I decided to shed light on Jad's strengths. 

This year I wanted to speak of abilities instead of disabilities. 

My little boy has autism but autism does not define him. It is one of so many characteristics that make the complex and beautiful person he is.  

Jad has so much potential, I cannot help but stare at him in awe. My heart races and sometimes I can hardly contain my excitement at the sight of him and how he behaves.

On Saturday March 31st, he did something not many of us would do: he flew

Flying is such a powerful action and symbol and is so accurately representative of who Jad is and who he can be.

He has so much courage and strength and his abilities may differ from the norm but they are brilliant nonetheless.

My son is fearless. 
He loves life and the world. 

And he flew above society, above stereotypes and negativity.

He flew with bravery and heart. He smiled at the clouds and laughed with the sea as he soared over Jounieh.

All smiles after a fantastic landing!

Paragliding Jounieh supported us in every way and truly enabled Jad to show his potential and go beyond what is usually accepted as his limits. They did it with complete professionalism, but most importantly utter kindness and love for Jad.

Dream Team

As I will never get tired of saying: Jad is absolutely perfect and he truly is the best version of himself. I would never wish him any different or would never think of changing him.

What we strive to do is simply what any parent does on a daily basis: empower him to go beyond stereotypes and obstacles and give him a chance to show the world his true potential.

Our main goal on that special day was to focus on different abilities rather than disabilities.

The People of Determination as they are now rightfully called in Dubai are truly exceptional and show us everyday that differences are not less. Differences are beautiful.

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