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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Going beyond April

Today is April 15, that means Autism Awareness Month is halfway through and in a couple of weeks, the word "Autism" will start to fade on our computer and mobile screens and consequently, in the lives of many. I am not trying to be dramatic for effect, but it is the reality. Autism Awareness Month is indeed coming to an end and soon, most lives will be free from that concern. 

But there is one thing families with Autism know for a fact: we have Autism all year round, all the time. No expiry date in sight. It is a reality we have to live with. 

Following April 2nd, World Autism Awareness Day, all I could see on Facebook and Twitter were articles and blogs on Autism (which was amazing, emotional and inspiring all at once). I found myself scrolling frantically, attempting to filter those I thought were really worth sharing without spamming the friends who followed my posts on social media. Inevitably, I ended up jamming a million posts in only a couple of days and naturally, as time passed, fewer articles were showing and I had to actually search for new ones to be able to share at least one story a day.

So how do we keep the momentum going? 

How do we continue educating others and bettering society for all of us, not just the families affected by Autism?

An open-mind, an open heart

First and foremost we learn Empathy and we teach it. Just like any other skill, it can be taught, it can be learnt and it can be perfected. There is nothing weird about that, really. Ideally, humans should be able to feel with their peers and other creatures and know right from wrong. We expect these abilities to be innate. They really are not. Growing and bettering one's soul is just the same as developing our physical and intellectual competences. If good health implies a healthy mind in a healthy body, then Empathy is an exercise for the soul equally important to workouts that keep our bodies fit or intellectual stimulation and challenges that keep our minds sharp. We must seek it. We must enforce it. We must practice it. Being a responsible human being implies so much and it is not easy but it is a must. Responsibility towards our Earth, our peers and all living creatures will ensure our survival on this planet. We need to understand we are all connected and the pain of one is the pain of us all. Or at least it should be. In this way, ignoring others is betraying one's self and solidarity with one is solidarity with all, and with one's self. I am not speaking of religions or spirituality here (not that there is anything wrong with that) and nurturing one's soul is not a distant abstract concept. Empathy is real and universal to all.

Less judging, more acting

The ability to understand and share another person's pain is commendable but it is not enough. We must act too. So when we see a child (or an adult for that matter) literally exploding in one of those terrifying tantrums, or suddenly running away for no apparent reason, or expressing violence towards another or himself, let us refrain from judging. I hear it too often here in Dubai: "kids in this country are spoiled and their parents are not doing their job and setting boundaries". That is so unfair and absolutely not true on so many levels. Each human being is a different independent person. Children are not robots. The assumption that because a child is acting out of societal norms, it automatically means parents have failed and that child is "bad" is outrageous. Let us spare ourselves and others the waste of time that is blame. It is not conductive to positive change or constructive efforts. It simply dumps responsibility on others so we do not have to bother ourselves with the burden. But that burden is ours, all of us. Society is ours. And when society outcasts people because of their differences, it makes it harder for those individuals or families to help themselves. However, when we all feel it is our role to act and try to rectify a certain situation for the better, then things start to fall into place naturally and everyone's lives become easier. Condemnation and vilification are easy. Involvement on the other hand, is much trickier. Be present and be involved. For your own sake and that of others.  

Integration

Being involved and transforming our society into one that is more accepting and open-minded will lead to better integration of all its members. As parents of children with Special Needs, we are always actively looking for organizations and institutions that offer inclusive programs and policies. In academia, in sports, in arts. In Dubai, it is illegal for schools to reject students because they have special needs. That does not mean that it does not happen. But as parents you think, why would I want to force a school to accept my child when I know too well that they refuse to help him? Luckily we also have a wide array of mainstream nurseries and schools that offer integration within certain frameworks like shadow teachers assisting on site. That is definitely a blessing, but a costly one. Therapy, shadowing and schools tuitions are not covered by insurances and it can get quite expensive, very quickly. In my humble opinion, I think all institutions, public and private should be inclusive. It should be done in a proper way so that the child with special needs, the classmates and the school's staff and faculty all feel comfortable and can build, teach and learn efficiently. Ultimately, schools are like micro-societies where children learn how to behave within their communities. It is how they grow to become well adjusted, functioning adults. If we want our children with Autism or other special needs to be able to live happily as adults, they need to experience these micro-societies too and they need to learn how to navigate social situations. This understanding of communal behavior can only come from exposure to others. 

Special Needs Centers

Sometimes, special needs and disabilities can make integration difficult. Some children might pose dangers to themselves or to others and they need to be cared for by experts within specialized, safe environments where understanding and help are constants. These options are wonderful and allow children and even adults to discover talents and hobbies they enjoy and maybe even build skills that can lead them to become a little bit more independent, be it for daily tasks like eating or using the bathroom to more complex abilities like achieving a certain financial autonomy (some institutions even secure jobs and placements within suitable workplaces that welcome special needs). In that way, special needs centers are admirable. However, we need to always be careful and make sure the organizations we choose are indeed providing all of the above and more. 

And as a society we need to remember that these centers are not an easy way to alleviate guilt and relieve ourselves from responsibility. It is not because these centers provide a safe, constructive environment to people with special needs that we are no longer responsible for being supportive in mainstream places and situations. 

Special needs are not annoyances that interrupts our daily lives. The solution is not to just place these people in specialized centers. They spend a great deal of their day there but at the end of the day, they get out to the "outside world" and they have to face, well, us. 

Special needs are realities of our daily lives. We cannot dismiss them. We cannot avoid them. We must learn to open up to them and to the wonderful array of possibilities and potential they can bring to our world. 

This is how we go beyond April. This is how we push further than just a single month a year. Educating, raising awareness and dedicating a day or a month is truly commendable but it is only a stepping stone to inspire, stimulate and cultivate new ways of thinking and acting and hopefully on the long run, create new policies and behaviors. 

This testimonial was written for Mums Like Us.

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AutismLove

Jad turned four a few weeks ago. In a day, all media around us will start talking about Autism and featuring stories of other children and adults and families living "on the spectrum". Because incidentally, Jad's birthday is closely followed by Autism Awareness Month/Day.

It is good. It helps. We need more awareness and we need to educate people because there is still so much to be done for our society to be truly whole and equal. Integration should not be a particular effort we are praised for.  Integration of all people, all kinds of people, should be the natural order of things in our modern, informed world. It is not though. And this is why Autism Awareness is so important.

But every time I want to write objectively on what Autism is and what it means and maybe how and what to do, I just freeze.

All I can think about right now is Jad is four. Jad is growing. He is absolutely beautiful. But he is growing. And as much as it brings me joy and pride to see him grow into a loving, fantastic little boy, to me right now, it also means, another year has passed and Jad remains non verbal.

Of course the reasonable part of me has accepted that Jad may never be fully verbal, or not at all. I have read enough to understand that this is a possibility.

It is a good thing I am typing right now because usually, at this point of the conversation my voice is already breaking and burning tears are rolling down my cheeks even though I truly do not mean to cry. So I guess I am grateful for that other part of me.

The mommy part that still hopes in spite of all the reasoning. It is timid. It does its praying on the inside,  in silence. Maybe it doesn't want to jinx it. I don't know. But that part hangs on to that story of a few children who finally said their first words at eight. Eight is a good number. I like it. It is arbitrary. It means nothing from a scientific standpoint. But I like it. It gives us time. It gives us another four whole years. Who knows what could happen in four years, right?

And then there is the reality. Not the pessimistic me. Not the hopeful me. Just the every day me. The one who lives with Jad in every moment of his life.

That me is sad today.

Don't get me wrong. I am not a sad person. Jad gives me joy a thousand times a day.

But still, if I have to sum up and rate my day in one word, the rating would be "sad" for today.

I can't help but play that one afternoon over and over again in my mind. We walked by the marina at Festival City and there was this awesome set up of games and food stands for kids. Mia insisted on playing mini-golf so her dad took her while Jad and I stayed on the improvised wooden stairs that served as benches in front of a small stage. He loved it. He was free to run along while I could be at peace knowing the space for this freedom was well defined within actual wooden borders. All he did was run back and forth on one bench. Over and over and over again. He seemed happy. He was laughing and "saying things". I don't know what. Not words. Just sounds. But I was relieved he seemed and sounded content. And then he suddenly stopped. He just sat there, staring in the distance, babbling calmly now, almost whispering to himself. So I looked to see what might have caught his attention. I couldn't tell. I asked him and of course that was silly. He had no way of telling me and I had no indication  he had even understood my question. Still I touched his hand and asked again. He just continued his babbling as he released his little hand from under my fingers. And my heart broke.  I stared at him in silence while he babbled staring in the distance. And I fought the tears because you don't want to break down and cry in front of your children. Or an entire crowd of strangers for that matter. I just kept on doing the only thing I could do. I watched him talking to himself in his little bubble and I just prayed. I just prayed he was happy.  I wanted so badly to know what he was feeling in that moment because as a parent, all you want is for your kids to be happy and to be able to be there should they need you. And for lack of better options like, I don't know, read his mind or something, I just sat on that silly bench praying he knew I was there and hoping he didn't need more than that in that moment. And hopefully, that he was happy or at the very least not sad.

All this talk about me and my feelings. While I know it is not about me. But I guess today I need to let some of it out because it is stuck in my throat and I am suffocating. Tomorrow is another day and things will be better.

Jad may be the one on the spectrum but our entire family has autism. And if there is one thing people can take from this testimonial, it is this. Be kind and understanding to families with special needs. We run out of patience with the world because patience is a luxury we need to save for our difficult moments at home. Give us space. Give us understanding. And most importantly, love our children. Because the one fear we have is to one day leave this world and abandon our children at the mercy of a tough and often cold society.

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On that piece of me that has a life of its own

The Internet is very proficient. It speaks poetry, it speaks verses, it speaks proses and it even speaks Inspirational the best. Very few of these quotes resonate with me. Very, very few. But sometimes, there will be one that stands out. No matter how corny and boring and "oh please give me a break" it sounds. Usually, if I will buy it in spite of all that, it is because it speaks of my children. I am a sucker for mommy beauty, what can I say? Guilty as charged. 

Source

One of the many "quotes" we see now and then, plastered on some nice photo of a child and a mother is:

'Making the decision to have a child - it is momentous. It is to decide forever to have your heart go walking around outside your body.'

- Elizabeth Stone 

Cheesy, I know. 

Also, very, very true. 

Say what you will. Some things are just meant to be cheesy.

Anyhow, half of my heart not only walks around, runs around and monkeys around with his bigger sister. He also is extra special. Not the kind you want your children to be though. The kind people use as a label to try and understand how to go about dealing with and maybe fixing your child. Special needs they are called.

My Jad is on the Autism Spectrum. 

It is a spectrum you see. It is no longer one disorder classified in a rigid box. Which is fair, since to be honest, each autistic person is very different from the next and their individuality is what makes them so wonderful and unique.

I hate labels.

"Autistic".

It means absolutely nothing. Just a word.

But each autistic person defines it in a personal way, in a different way, in a sometimes utterly beautiful way, sometimes in a brilliant way and sometimes in very difficult and hard ways.

But what it means mostly, is that it is not a mold. Not all autistic people fit in the same box. And that is wonderful. Because it is what it means to be human.

And that is what we need to remember first and foremost: the human side.

People.

Like you and I, struggling to understand this world and make the best out of this life. We are all the same in that quest, right?

THE BEAUTIFUL MONTHS 

Jad was born in Lebanon in March of 2012. It is his birthday soon. My little love will be turning three. The light of my heart and soul. Growing every day. Becoming more and more beautiful with time. My love.

He spent the first six months of his life in Lebanon because we were a little lazy. We figured, "hey, it's March. We should be back here in a few months for summer. Why not just stick around and go back in September?" Which is exactly what we did. Back then Mia only had nursery and it was not like she was working hard on getting her PhD. We could afford the time away. It was a wonderful time too. We had family and friends around. The kids loved it. And me too.

Jad was growing and in those first months, it does look like they change by the minute! He was laughing, playing, singing (or something that he intended to be musical) and was your "normal" baby by any developmental standard out there, medical and psychological.

When I watch videos of him back then, I just cannot understand. I cannot believe. He used to be so much "with us". With his grand-parents. Especially my dad. He would even call him in a special way that sounds like the arabic word for grand-pa. By the end of these six months, he had actually learned to say "bye-bye" in context, while waving his cute, tiny hand. He could say "mama" and "jedde" (the word for grand-pa). He would imitate and repeat. He was talking funny but nothing to be concerned about. Like all babies. Baby talk.

Every time I would post a photo or a video of him on Facebook, people would tell me to stop because of "evil eyes". (Arab people are so funny)

He was always so happy, always smiling and laughing. It was contagious too! We would go out and within minutes he would have an audience and everyone would be in love with his smile and laughter. It was even a little frustrating for me because it would take so much attention away from his sister and I would hurt inside seeing her so lonely in those moments. People would literally block out everyone and everything when Jad was around. He had that magical power. That charisma. 

THE TRIGGER 

Finally, September came and we returned to Dubai. It was a total shock for the kids. Mia started school so she got busy and distracted which was great. But Jad ended up in an empty house, all alone with me. A very busy me. A me who had to take care of chores and left him to play by himself for hours. Which he did without complaining or nagging. His dad had to start traveling a lot and with his sister away all day, he found himself quite lonely in a quiet house. No more neighbors, no more grand-parents, no more aunties and uncles. Everyone was gone.

Within a few weeks, I started to notice he was sad. His dad and I thought he was being a little depressed and missed all the fun and crowd of Lebanon. But it got worse. He quit looking at us. He would not respond when we called out his name. He literally stopped laughing and even smiling. Nothing. Not a reaction. He would just sit there, by himself. Uninterested with us or his surroundings.

It just broke me. 

My child had been so unhappy he quit smiling. He quit making eye contact. He quit answering when we called his name. He basically had had enough with us. He quit us.

Or so I thought.

I take it back. "It broke me" does not even begin to describe how I felt.

A NEW REALITY 

The trigger might indeed have been the trip. But it was bound to happen anyway. There are two types of autism. The kind children are born with and which are easier to identify because they show quite quickly. And there is the other kind. Jad's kind. There was no way we could have known.

It is called regression.

The child is born and develops completely normally until some time around 15 to 18 months, all development slows down or worse, comes to an end.

When we noticed, Jad was so young no medical expert would label him. After all, many children his age are late with the same milestones. And what would be the use of labels, right? What would they achieve?

His neurologist even told me something that would stick: "What is normal, anyway?"

I absolutely love that.
It encompasses so much truth.
And hope.
But mostly truth.

He said something along the lines of everyone facing challenges in certain areas, social, intellectual, etc. It is the depth and amplitude that these challenges take that can differ and in the case of Jad, they make some of these challenges a little harder.

I mean it is true. If I am standing in line and people start to push and the people in front of me are not moving, I start to get stressed and quite frankly in some instance, I wish I could just scream at them all and push them away and just get it done with. That is why I no longer stand up when the airplane lands. I wait. And wait. And wait. For everyone to disembark. Then, when that narrow aisle is finally empty, I stand up and walk and breathe normally. Some people are claustrophobic. Others are OCD.

Each and everyone of us has something or some things. We just learn to deal with them. And that is what Jad should learn too.

With the right therapy and tools, he can.

So we agreed not to label him but we also agreed that he had autistic traits. And most importantly, we set a plan to work on these traits (in no particular order of importance):

1. Jad's poor eye contact
2. Jad's speech delay
3. Jad's interaction with others
4. Jad's (non)response when his name is called
5. Jad's tiptoe walking

That is referred to as mild autism. Because if you compare it to what other autistic children and adults must deal with, what delays Jad or brings him stress is far less dramatic than the lists others may be burdened with. 

We got lucky, I guess.

The first step we took was speak with a friend of a friend who is now Jad's Speech Therapist. She recommended we immediately enroll him in a nursery as this time alone at home was counter productive to the work she would be doing in therapy. Jad also started Occupational Therapy to work on his sensorial and motor skills development. 

So we picked a nursery. Since our hope has always been to have both our children in the same school, and since Mia's school is French, we looked for a French speaking nursery. We got so lucky with our choice. It was pure luck but they are absolutely fantastic with Jad (and us). I have cried for month in their office while both Jad and I were trying to adjust to this new reality. 

The speculation that followed was silly and cruel to say the least. People who have no medical background whatsoever or any education or even insight on healthcare would ask "Did you have a normal delivery? Do you think the induction is what caused it? Maybe it was a vaccine, I heard vaccines can cause autism?"

Nope. None of the above were the reason.

The fact of the matter is, we do not know what the reasons are.

But I do know for certain that induced labor did not cause Jad's autism. I was induced with Mia too. My mom was induced three times and myself and my two siblings are just fine. And I am certainly not going to blame immunization! I believe firmly in herd immunity. And let me say it now, I would take Jad's current condition and all the hardships any day instead of having to watch any child suffer or even die of an eradicated disease or something as silly as chickenpox. I am not claiming that vaccines may not contain harmful chemicals. It is a probability and I am certain profitable companies will put gain before health. However, I will trust that these chemicals are still safer than the return of the plague. Or whatever could have similar consequences.

WHAT IS NORMAL ANYWAY?

A little over a year later, I can say that Jad is now doing much, much better. We were lucky indeed. Lucky it is mild but also lucky we caught it early on.

EARLY INTERVENTION IS A GREAT FACTOR FOR SUCCESS. 

Many people waste precious time dismissing signs thinking that other children take time or are late reaching these milestones too. This may be true. Or not. Why take the chance when time is of the essence to resolve these issues? Any sign should be taken seriously.

Other people will simply ignore the signs. Denial will only harm the child as zero effort is made by the family, surrounding environment or health experts to try and help. It is OK to say, there is something wrong with my child and I will do all that is humanly possible to help him beat this.

I am so grateful we noticed the symptoms early on and decided to act quickly. Jad is doing so well now. His eye contact is fantastic. He loves nursery and being around his friends. If he stays at home for too long, he will look for his backpack and grab my hand and walk me to the main door, in an attempt to make me understand he wants to go to school. His interaction with his peers is not there yet. He will parallel play mostly but at least, he loves being around them. When they sing and dance, he will participate and laugh wholeheartedly.

Oh thank God for the laughs!

I cannot even put into words what it means to look at our child and do all you can to have a connection and hopefully make them smile while all they do is stare in the distance, at absolutely nothing and most painfully, certainly not you and not laugh or even smile.

That is death. That is my heart dying. 

But thank God, we are passed that. Jad now cuddles, makes eye contact, and not just with me. With everyone now. And he will smile. A social smile (a reaction to something that he finds nice or funny). And he will laugh. With all of his heart and soul. And this is when all of my heart and soul come back to life. 

Of course we still have a long way to go. Jad still does not utter a word. He babbles. Mostly baby talk. But no words. Not even two-syllables. But we are actively working on that and hopefully, things will improve. We do not hope he will one day graduate from Harvard. That could happen. Why not? But that is not our goal and hope. Our only reason for all of this is his happiness. We just want a happy son. That is all. The rest? We could not care less about. 

Right now, we are also rectifying his tip-toeing. While Jad used to alternate between flat walking and tip-toeing, he reached a state of exclusive tip-toeing as a method for walking. His little toe bones are not strong enough and on the long run could be damaged and deformed. He could also end up needing surgery. So we approached a fantastic surgeon with extensive experience with children similar to Jad and he put him in a cast for 6 weeks effectively forcing him to keep his feet flat at all times. Now we have moved him to special orthopedic shoes which look like boots. They keep his feet flat too. He has a day pair which is flexible around the ankle and allows his brain to train and recognize how his foot should operate to walk. And he has a night pair which is like a cast (no movement). We hope that within 6 to 9 months, Jad will have reprogrammed his brain to walk normally.

THE WONDERFUL PEOPLE AROUND US

If you ever feel like you need to speak to someone or have doubts about your child, do not hesitate. 

Trust your instincts. 

When people were telling me "Oh it's OK, he just misses Lebanon, he'll come around" or "All boys are late, don't compare him to his sister, he will talk in due time", my gut was telling me something else. 

All these people were meaning well, of course, Bless them. They were as worried as we were about Jad and were looking for hopeful answers. 

However,  and I cannot stress it enough: listen to your gut. No one knows your child more than you do. And that survival instinct you have, trust it. 

So if you ever should need them (God Forbid), here are our people, our rocks, the ones we count on:

Souad El Sett, Speech Therapist (UAE)
Contact: KIDSfirst - +97143485437 

Lamia Bourayou, Nursery Director (UAE)
Contact: Le Jardin Enchanté - +97143486788 

Nayla Merhi and Pathy Bou Rada (LEBANON)
Judy Jreige (Speech Therapist)
Reem Chamas (Occupation Therapist)
Contact: North Autism Center - +9613840440 

Dr. Saada Alame, Pediatric Neurology (LEBANON)
Dr. Joumana Alame, Pediatrics
Contact: CMC - +9611372888

Dr. Michael Vohrer, Pediatric Orthopaedic Surgeon and Foot Surgeon (UAE) 

Contact: The Children's Medical Centre - +97143282664  

   

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Ode to a Former Lover...

English

Taken from: Grossesse En Blog

Sleep, Sleep, Sleep
How I miss you heap(s)

To Mia, staying awake is an art
And that is why you & I are apart

Because I am now her personal assistant
And the nights have become sleep-resistant

Oh my God, how I miss you so

Off to meet with my tenth Espresso
Who's become my new Amoroso

Love you always,
Rouba

WHERE I’VE BEEN HIDING…

English

Note: this post is quite long and it could get tiring on a black background, so feel free to visit me at Grossesse En Blog and read it there until I find the time to rework on this blog's look and feel ;) Thanks!!


I woke up that morning, thinking of our upcoming trip to China and what I still needed to do to get ready.

One pending task on my checklist: peeing.

Well not just peeing, peeing on a stick.

It wasn’t like I was late or worried but I just needed to make sure I wasn’t going to discover any surprises once we were there.

So I carefully proceeded with the usual ritual and waited, with not much enthusiasm might I add, since my cycle is normally longer than most and I had absolutely no indicators that could lead me to think something was growing inside of me.

It was just a precautionary measure that hubby had insisted on because he couldn’t cut his trip short should I actually be pregnant. He was travelling on business and didn’t want to take chances.

The first line appeared very quickly, no drama there. The test was working fine.
Now we wait.
Actually I wait. Alone. So what? There was nothing to get excited about anyway, and my time would have been better spent googling Beijing’s weather and checking my closet for appropriately comfy clothes. I couldn’t believe I was about to see the Great Wall. My life was about to get just a tiny bit cooler!

And it did get just a tiny bit cooler.
Actually not just a tiny bit.
So much cooler than I was imagining.
So much cooler than the Great Wall.
So much cooler than all of China.
So much cooler than anything else in this world.

The second line appeared.

It was probably a bit foolish from hubby to think he could leave me all alone with a stick. No matter how small that stick was! I don’t really remember what happened next. All I know is that I was shivering and turning in circles trying to figure out what to do next!

A phone. I needed a phone. Where had I left my phone? It took me a couple of minutes that felt like an eternity but I finally managed to locate my mobile. Step two: dial. That took a little while too and it is when I actually realized I was shaking! My fingers wouldn’t obey my brain’s insistent instructions and type on the proper keys!

Finally I had hubby on the line. I am not sure I was making much sense and my voice was so pitchy and shaky it took a few sentences for hubby to grasp the simple word “Pregnant!”

I was so excited I couldn’t stand still. Or sit. Or just stop trembling like a leaf!

As I waited for hubby to come pick me up and take me to the nearest clinic for a blood test (false positives are rare but you never know) I almost went insane.

So I decided to call my mom despite the fact we had agreed to wait for the blood test results. By the time maman had picked up, I was crying, chittering, breathing heavily, sobbing all at once so of course she first imagined the worst (I don’t know what that would be but she probably thought I had some kind of disease or something!) and she finally heard THE word I managed to articulate once again in the most pitchy, shaky and annoying voice I had ever heard! She remained as calm as possible although I could feel the excitement in the silences between each of the words she spoke.

The blood test confirmed the cancellation of my trip to Beijing.

(Come to think of it, testing for potential pregnancies is a bit ghastly and violent: pee, blood, cold devices shoved in rather sensitive areas… Not very glamorous. Sounds more like torture! And yet, if you’ve been waiting for a *positive*, the disgust usually associated with such repulsive practices suddenly becomes fantastic, brilliant, magnificent!)

The Great Wall’s photo on the VISA stamped on my passport would be the closest I’d get to experience China (yet). And I loved it!

So here I was, a frantic, hysterical mom-to-be.

That baby had hit the jackpot!
Actually that baby’s future shrink had hit the jackpot!

And it wasn’t about to get any calmer.
Because the most apprehensive was still to come: the ultrasound.

After two miscarriages predicted in advance by disappointing ultrasounds, I have developed a phobia of that already abusive device. First of all it forcefully violates parts of my body I’d rather keep private and to top it all, it’s become my own personal psychic with an emphasis on bad news! Bad news that would usually lead to me in pain, bleeding and cursing!

The minute I laid on the exam table, I started to sob! The technician must have thought I was borderline insane considering she hadn’t even turned on the machine yet!

She insisted on doing a belly view which I disagreed with several times but she just wouldn’t listen. My overwhelming fear was making the very rational argument that it was too early to “see” anything from the belly. And I was so worried the prognostic would be: it’s too small for the number of weeks you’re at. Indeed, she turned and turned and looked and turned again and looked again… Nothing.

My sobbing quickly turned into anxious crying, with tears pouring from my eyes like a fountain! The technician called my OBG who quickly got to the exam room and checked for herself before (finally!) doing an internal scan.

And there it was! I couldn’t resist spitting an “I told you so!” to the technician. Of course that didn’t put us any more at ease since the OBG told us usually we should be able to perform a belly view at this stage of the pregnancy. Well thank you for the reassurance, especially knowing my medical history.

That same anxiety followed me at each and every ultrasound since.

I guess I truly am sonographobic now!

The fear of an underdeveloped embryo or blighted ovum (anembryonic gestation / œuf clair) behind us, I developed more fears as the pregnancy progressed.

Yes, I am paranoid to the extent that I can never enjoy anything fully because I’m always worried about the worst! But that’s another story; I’m not here to psychoanalyze and get to the roots of my emotional dysfunctions.

As I had learned from my first pregnancy, one of the signs of a blighted ovum is when pregnancy symptoms suddenly end. Indeed, my first experience with child conception terminated at week 6 or so when the ultrasounds showed the embryo was not growing from one week to the next and so the doctor diagnosed an anembryonic gestation which is basically an empty sac. There was no need to be upset (or so they say) because there was no “baby” to begin with. Everything is relative and of course, to us, it was as tragic as death.

This experience alone shouldn’t have scarred me for life; after all many of my friends have endured a blighted ovum (some more than once) in between successful pregnancies. I was not the first nor the last to suffer from a miscarriage.

Then again, the doctor could have been less cavalier about it and should have followed up instead of leaving me with the news and travelling that same day for a one-month vacation! I ended up with a major hemorrhage at home that same evening; with contractions and pains I had never imagined before! We spent the whole night at the ER of the American Hospital in Dubai where they told me everything was OK and the last ultrasound showed a “clean” uterus confirming my body had expulsed the fetus entirely. It was probably sloppy from me not to request an OBG and I trusted the ER doctor and ultrasound technician’s verdict, allowing me to go home and even travel the next morning. I wasn’t about to undergo surgery in Dubai with my OBG out of town so I headed for a curettage in Lebanon. Apparently, ER doctors who handle night shifts shouldn’t be trusted as much as seven-month pregnant ultrasound technicians! Indeed, thirty minutes before reaching Beirut’s airport, contractions and the hemorrhage erupted again and I ended up leaving the airplane screaming in a wheel chair that rolled me straight to a Red Cross ambulance, and off we went as fast as lightening directly to the hospital. The bleeding lasted for a good week before my doctor decided to schedule the curettage (apparently, once we start, they leave us on auto-clean mode and only then proceed with surgical cleaning). He was so shocked afterwards to find the majority of the fetus remains were still “inside”.

And apparently some of it still stayed “inside” even after the curettage! We had waited six months before attempting to get pregnant again to make sure I had given my body enough time to be ready. And six months later, I was pregnant again. Hubby is very efficient that way. The oh-so-dreaded ultrasound also ended in paralyzing disappointment and a sea of tears.

The fetus looked underdeveloped but nothing was clear and we were advised to wait a week. Evidently, the curettage hadn’t been completed properly and the new images showed residues stuck on the sac. Or an ectopic pregnancy. Both options were completely devastating but the thought of an ectopic pregnancy even scarier so again, I flew to Beirut for curettage. The OBG who performed the previous one was furious my doctor in Dubai had dared criticize his work and was conclusive: it’s an ectopic pregnancy. It was a Friday. He told me to come back on Monday. I was in shock. I didn’t want to wait. I wanted it removed. Immediately. He assured me there was no danger and I could spend my weekend in peace (as he would) and I should return to see him on Monday first thing in the morning and he’d perform the surgery then. I did as advised… And waited until the afternoon for him! He never even spoke to me that day. When I checked with his secretary, insisting I had an emergency she replied that he had other patients and he was busy doing an ultrasound. I got furious. Insane would be more accurate. All this time I thought he had emergencies. Turned out he was receiving patient after patient for regular checkups, and none had any sort of medical emergencies whatsoever! So I left running down the stairs, screaming and cursing in all the languages I proficiently speak and headed to another hospital nearby, on foot mind you. I was so angry I could have walked all the way back to Dubai and not even feel a thing! The OBG they assigned examined me in between patients, as an emergency case, and concluded there was nothing to be worried about. My doctor wouldn’t bother hurrying simply because it wasn’t an ectopic anything. The Dubai diagnosis was correct: there were residues which prevented the fetus from growing. But of course the doctor who performed the curettage wouldn’t admit to that and instead preferred leaving me in panic for three days. The newly assigned OBG scheduled my procedure that same day and told me to admit myself immediately and get prepped for surgery. It would be both a Laparoscopy and curettage followed by an another long wait before trying to get pregnant again as hubby was often away on business and could only be in Dubai for the weekends. I asked him to explain to his boss and the clients that ovulations aren’t programmable on-demand but he wasn’t sure they’d appreciate the biology lesson.

Needless to say my personal procreation history had turned me into a major drama queen!

I have to admit all sorts of ideas were battling in my head as pregnancy symptoms were not showing. I was feeling suspiciously fine.

Unlike my first pregnancy during which I was forcefully put to bed by a fierce continuous nausea: no vomiting at all; just uninterrupted sickness 24 hours a day to the extend I had to bang my head against the wall to make myself fall asleep at night!

When it ended literally overnight, a sign my pregnancy had died too, I cursed the days I was lamenting about nausea and would have given anything to be nauseous again!

And this time was no exception. I was praying for signs.

Little did I know mother nature would be extremely generous with me signs-wise. Signs appeared. Nausea. All day. 24 hours a day. But this time, it was enhanced with vomiting. All day. Yes, it is possible to vomit a million times a day.

Everyone was telling me all that would end by the second trimester but I was no dupe. I knew my mom’s history. Continuous vomiting throughout her three pregnancies! Vomiting that would only end in the delivery room and only once the baby was out.

And in homage to ma petite maman, I too spent nine months puking, being nauseous and by month 7, added severe heartburns to the recipe.

Of course, I would try to console myself by thinking: “anything worth having should be hard to get” or “this baby will be that much more precious” or “it’s a small price to pay for the wonders to come” and most importantly “at least this time you’re getting a baby at the end”… All words of course. Not cures.

When I started showing symptoms, hubby was away all week and could only be next to me on weekends. He came home one day to find me just laying around, exhausted. I couldn’t keep anything down and was vomiting so much I ended up throwing up blood all week! He took me to the hospital where I got an IV which supposedly should have hydrated me and kept me from vomiting for a few days. Because vomit feeds on dehydration. And dehydration is caused by vomiting. A vicious circle which can only be broken with rehydration and the only way my body was going to take fluids was via intravenous feeding. I puked as I left the building. So much for a few days of peace!

Hubby had contacted mom and told her she had to come to Dubai immediately because I was in really bad shape and needed constant care which neither he nor my brother knew how to give or even had the time to give.

They all kept her arrival a surprise. When she entered my room where I was lying in bed, with the light off, depressing by myself; I screamed at her sight! And then burst into tears. Total hormonal craziness! I cried like a little baby in her arms for a while there. Until she decided to shake me up and get me out of the room. She was going to give me fluids and I would take them even if I was going to throw them up a couple of seconds later. This was the only way.

My OBG had prescribed a certain pill in case the vomiting wouldn’t stop at all. A pill which was developed for cancer patients on chemotherapy! Pregnant women suffering from severe vomiting are taking it in the US but it is still at its early stages and there are no pertinent studies to confirm or refute possible harmful effects on the baby. So I refrained. I would rather puke blood fifteen times a day than gamble with my baby’s health.

Yes, I did just get on my high horse.

And also, I did take the pill. Once.

I couldn’t smell anything or anyone and ended up sleeping in the living room with mom sleeping on the floor! She would wake up at night, clean up after me, and make infusion that should supposedly help. All night. I was looking at her, admiring her and wondering if I’d be able to be such a strong mother for my baby one day. After a few weeks, we decided to leave for Lebanon because hubby and my brother couldn’t bear to live in Dubai, in the summer, with no air conditioning which had become my rule at home!

So in order to travel, I had to get down from my high horse's back and took one "cancer pill". I did not throw up that day, thank God, despite my continuous nausea.

Once we reached Beirut, it was my dad’s turn to live by the crazy-fat-hormonal-bitch-law. Every time he or any man would enter the room, I would puke. Hubby would come to visit for a few days, and I never missed. I threw up each and every time we were together.

My mom and I ended up sequestrated at home for nine months, forbidding any and all kinds of visits, even when people promised not to wear perfume or deodorant. After all, my dad was doing that very thing (he had left his in the car and would spray himself on his way to work) and still, I got sick every time he entered the room in the evenings when his perfume had already faded away hours ago.

So basically I incarcerated my mom in solitary!
Visits were not allowed at the crazy-fat-hormonal-bitch-jail!

The most absurd symptom was vomit-by-phone.

I kid you not. Every time I would speak on the phone, I’d get so sick I’d have to throw the phone away and run to the bathroom! I discovered the reason why one day as my dad was watching TV and I was sleeping in another room. I was listening to the TV but couldn’t see anything. And I got nauseous. Apparently, when on the phone, my brain couldn’t comprehend why the voice it was hearing didn’t come with a face!

Hubby ended up getting news and updates from my mom who had to spend her time apologizing to the world and swearing on her life that I couldn’t physically get to the phone.

Sometimes some things are hard to understand. And believe. And I can see why some people would take it personally and be upset. Thankfully, those who I care for accepted the situation (I’m not sure they believed it completely but they respected my needs).

I couldn’t go out for nine months

I had absolutely no energy and anyway, what would I do out? I was too afraid to puke at every street corner! Car trips? No thanks! I used to get sick even when I was not pregnant, so with the preggo-nausea and the roads of Lebanon which are smooth as a wild mountain rocky track, outings were a total recipe for disasters. Every trip to the doctor’s was aggravating and I had to make superhuman efforts to get there for checkups and run back home to rest.

Embarrassing disasters did happen like when I surrendered to my family’s incessant nagging and finally went to have dinner just down the street at Hamra’s Crepaway. By the time we were seated, I had already snatched my plastic bag from my mom’s purse and puked my heart out! But we did stay and ordered dinner! That's the spirit of fighters just there!

I (and especially mom) did get a short break when I mustered up the courage to endure a car trip and got up to my hometown, Ehden. The mountain fresh air was very helpful and despite the fact that I never left home either, I could at least walk around my beloved grand-mother’s garden. The weather was becoming unbearable in Beirut, worse than Dubai (!) and we were suffocating without air conditioning. It was a really good month. I got to have fun with my téta*, her wonderful neighbors and most importantly, I got to see the sun! That didn’t prevent me from throwing up, mind you. I’d been very adamant about vomiting. When I set my mind on doing something, nothing can stop me and I was very keen on throwing up, yes, very keen I tell you! It was pure pleasure so why would I take a break, even for one day? (Am I pushing the irony to the extent of exasperation? Sincere apologies).
*téta: equivalent to “nana”; grand-mother’s pet name in Arabic

And so, as I survived my first excruciating miscarriage (and now I don’t even remember the pain I felt then) , I undeniably survived that difficult pregnancy.

There were some memorable moments, like when I felt a kick (or was it a punch?) for the first time.

October 27, 2010.

I was so frustrated I couldn’t feel the baby even by the third trimester that it was an explosion of happiness when she finally hit me for the first time! Somehow, every time her dad was around, his hand on my belly, waiting for a sign, she just refrained. She knows her to make herself wanted, that one!

Another anecdote, just for the fun of it and also just a little bit to corroborate I am a certifiably paranoid phobic:

By the end of month 8, I could finally feel Mia but also hear her heartbeats thanks to a small monitor that works like a doctor’s stethoscope. Well, one night I went to bed thinking that I hadn’t felt her all day so I turned and turned in bed, lingering on the side she prefers, and still, nothing. It was passed midnight and I was starting to panic. So I went to my parents’ bedroom and woke my mom up. I told her what was happening and she told me to stop being paranoid and go back to sleep because babies don’t necessarily make their presence noticeable all the time. So I went back to bed but couldn’t fall asleep. I grabbed the heart listener and proceeded to "search" for Mia. I must have checked every centimeter of my belly. Nothing. I instantly remembered stories I had heard about babies suddenly dying in the womb and I burst into tears! My mom heard me and came to my room, checked what was happening and I told her I couldn’t “find” Mia so she woke my dad up and told me to get dressed. She was certain everything was OK but she knew I wouldn’t get to sleep if I wasn’t reassured first. So we went to the hospital where I was scheduled to give birth and we explained the situation. The nurses smiled and said first time moms always panic like that and it wasn't the first time they had "emergencies" of the sort in the middle of the night. Apparently no one was willing to take my worrying seriously! They took me to the monitoring room anyway and called a midwife. She was so sweet and gave me some tips as she installed the straps on my belly. Then she proceeded to look for Mia and find a heartbeat. Nothing. She searched and searched… Nothing. My eyes filled with water and I looked at my mom and saw she wasn’t doing a great job hiding her fear! I was holding back the water fountain, grinding my teeth, when all of a sudden, at the very second when two tears rolled down my cheeks (I know it sounds cheesy but it’s true) we heard the loudest “boom boom” ever! The look on my parents’ faces was priceless. They were both holding their breath and they confessed later that they thought the worst had happened! So did I. But it appears that Mia had just turned upside down and it took a little longer to locate her heart!


And now, two days before Mia’s two-month birthday, I can honestly look back and feel pure joy in spite of all these annoyances which have become so insignificant in the face of her presence near me. Just one look from her. Just one smile from her. And I'm ready to get pregnant all over again!

WAWA qaqa

Français

Lorsque je suis tombée enceinte, j’ai dû rentrer au Liban où j’ai passé toute ma grossesse en compagnie du poste de télévision de mes parents. Ils reçoivent les chaines françaises et je m’y suis accrochée comme à une bouée de secours. Entre les vomissements à longueur de journée, l’incessante nausée, les coups de fatigue et siestes forcées et mes merveilleuses sautes d’humeur, il fallait bien passer le temps. Quitte à passer neuf mois entre quatre murs, autant les passer drogué de niaiseries. Si non comment survivre une séquestration pareille? Et la télé, bein Dieu merci, elle en déborde de niaiseries!

Ça faisait tellement longtemps que je n’avais pas vu d’émissions françaises que je me suis bien amusée autant avec les documentaires et programmes intelligents qu’avec les diffusions de bêtises (et même les publicités, alors c’est dire à quel point j’étais mal)!

Parmi toutes ces chaines de bonheur (mes hormones étaient dans un de ces états pour trouver tant d’enchantement dans quelque chose de si débile!) j’ai découvert W9. Dès que j’ai vu le logo, j’ai lu M6! Oui je sais, je dois être un peu dyslexique sur les bords parceque même quand je tape des textos sur mon portable, il m’arrive de mettre un «w» à la place du «m» , un «d» à la place du «b» ou un «q» à la place du «p» et donc M6 W9 m’a sauté aux yeux aussi vite qu’HARPO , la boite de production d’OPRAH.

Quand j’étais petite, j’adorais les jeux de symétrie et les exercices de «miroir» qu’on nous donnait à l’école. Et maintenant je vois des miroirs partout!

Et avec la venue de ma petite Mia, je ne peux que penser à

papa qui devient qaqa
&
mama qui devient wawa

(«wawa» veut dire «douleur» en langage-bébé arabe)

Très approprié, non?
(NON)