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Friday, March 24, 2017

2017-03-24 - Friday Whisper – I thought I got it all…

I thought I got it all…. I lived my life, achieved what I wanted, lived abroad, experienced many facades of life, entertained myself, made lots of friends, enjoyed my time with family…and when the time came, I met the love of my life, got married and settled down with a great man and lovely children. They gave me the chance to experience what it is like to have kids, teenagers, adults, boys and girls, with all the joy and challenges that come with it. I thought it couldn’t be better…but then I became pregnant, just like that, naturally…. and that was the cherry on top of the cake.  I thought that this will be the child who will seal this circle of love… she will be the link that will connect us all and forever.

On 3rd of July 2016, Mila joined my life… at the hospital the nurse brought her to me for couple of minutes and then took her away. Once they brought me to my room, a doctor came and told us that Mila was a bit weak, so they had to move her to the Newborn Intensive Care Unit… I knew later on that she needed to be on oxygen support, that she had hypotonia, that she was born with a hip dysplasia plus a jaundice and a blood infection! A bundle of unpleasant things, that to say!
Once I was able to walk, I went to the NICU to see her…she was in this cubicle, attached to tubes and machines… so tiny with 2.4 kg of weight, so peaceful…

It took four days before I could hold her into my arms but when I did, it felt so good, so whole… After few days, I had to leave the hospital without her as she had to stay for few more days before her oxygen problem and blood infection were solved.  Doctors also took blood samples from her to do some chromosome tests.

When I left without Mila, I felt down…it was supposed to be different…I was supposed to leave the hospital with her… for my sleepless nights to start…I was supposed to nurse her every couple of hours and shush her siblings when she was sleeping…Mom was supposed to teach me how to bathe her… Sami was supposed to take care of her while I take a nap after a long night… instead the only proof of her existence at home was the milk pump I was using and my hospital visits…

When we finally brought her home, unlike Sami, I couldn’t rejoice fully as I was still worried about the chromosome test results…

As I was waiting for the results day by day, I felt something was wrong… that she might have some kind of syndrome… I started grieving the child I was expecting and all the dreams I had for her… the school I wanted her to attend, the university I wanted her to join, the places I wanted her to travel to, her going out with her friends, driving her car, learning to play music, learning new languages, reading all those books on the shelf, excelling in her career, making friends with neighbors, playing with her cousins… And I thought of her life if the test results came back positive…how dependent she will be? Will she be excluded from society? Would people look at her with pity and tell themselves thank God they don’t have to deal with such case? Would her friends spend time with her but when they plan for an outing they won’t call her to join them? Would she be deprived from higher education? And I sobbed…even before I got the results… I sobbed…

Finally after a month, the results came confirming my worries… Mila has Down syndrome…
For the next weeks I would daydream about going back to that delivery day…to that very moment when Mila was born and undo the fate… having her in full health… her joining me after delivery…us leaving hospital together few days later… then carry on with life just like everybody else…just like that…as simple as it can be…

However, reality was different… the reality was that all of a sudden I felt as if someone dropped me in the middle of the ocean, I didn’t know where I am nor which direction to take…

It took few months for me to figure things out, to google stuff, to ask experienced people around, to visit concerned centers till I knew exactly where I am and what I have to do… so the early intervention journey started there with the help of our families and friends, and above all my Mom and my rock, Sami… It found out that the presence of Down syndrome persons in a home can bring peace and serenity to the whole family.  With proper preparation, I learned that she can lead a great life, she can have friends, she can reach college, she can learn whichever music and language she wants, she can earn her own living and be on her own.  Of course, she will have challenges but this can be overcome with professional help. Her limitations will be the ones that society and we will put on her. With the right intervention, she might be able to be and do whatever she wants….

Mila introduced us to a world I didn’t know existed…no matter how much you think you understand the world of people with special needs, you won’t know it until you walk into that world…
I realized how we excluded them from our lives...how they and their needs were invisible to us…and how we are so absorbed in our own world that we don’t know they exist…how we put a stigma on them because they don’t fit into our “normal” stereotype. How we pity them when in reality we have to pity our own limitations of understanding them.

Looking back now, I found out that the chromosome test was just one examination among other medical tests, not more than that… It is just an index to direct our journey, but for sure doesn’t define who Mila is….my worries were only mine… my preconceptions were because of my ignorance… and the main disability was my perception and misunderstanding…I can see now how my past journey in life has prepared me for my Mila…and the future shall tell me what Mila is preparing me for…

Today, we are all enjoying Mila at home and our journey with her; a journey that is teaching us a lot not only about her but also about ourselves… she is bringing the best in everyone who knows her, and for sure, she is bringing the best in Sami and me…

As Yvonne Pierre, an American advocate and writer, said: “When you focus on someone's disability you'll overlook their abilities, beauty and uniqueness. Once you learn to accept and love them for who they are, you subconsciously learn to love yourself unconditionally.”

And another quote by unknown says: “Until you have a kid with special needs you have no idea of the depth of your strength, tenacity and resourcefulness.”


Mila turned out to be everything I didn’t know I wanted…I now know that I’ve got it all…

meet Mila Sami Tabsh :)

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