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Im a mother. A mother to two beautiful twin boys. My boys are my world. Unfortunately one of them is very sick. Battling with seizures, Neurofibromatosis 1 (NF1) and many other issues including Autism. But his drive to learn, his drive to assert his presence is what pushes me to find a cure. A cure for the incureable. Here I am, Playing God. Playing God to him, to my Tuti, to his brother, and most of all to our family. Im just a mother, a mother who is playing God to my Tuti. My Tuti Fruiti

Wednesday, January 9, 2013

Above and Beyond...

It's been extremely long since I've written. The holidays went by so fast. Too fast for my own liking. I enjoyed having hubby around and the boys were just having a blast. Tuti seems to have just blossomed. He is different. Very different. Happier. Much much happier.

Even though he has been sick the first week of the holidays, he still managed to light up our days. I love this boy so much. But today. Today I have a few words. A few words for the family that was in the waiting room with us at the doctors. Yeah school starts and guess where we end up in? Yup that's right the doctors office. I'm so embarrassed already. I used to tell him that I see him more than I see my own husband but today today I just thought these words were far too lame far too used. Maybe because what I heard in that waiting room took over my thoughts. Took over my soul.

As I was playing with Tuti in the waiting room I see a couple with their daughter. The woman was veiled so I knew she was from the Middle East or Asia. I heard them talk and sure enough they were Arabs. I just continued playing with Tuti, tickling him just so I can hear his cute laughter and squeals of delight. The little girl with the arab family would squeal too from his laughter. Then Tuti started to babble like he always does when he is super happy. The woman then turned to her husband and said in Arabic "the boy is abnormal" if I tell you that these words felt like a dagger I would be lying. These words felt worse than a dagger. Much worse.

These words killed me. Killed every ounce of happiness I had in me. I continued playing with Tuti but my mind was with that couple. I sooooo wanted to reply in Arabic and say no, no he is not abnormal. He is a child. A baby. A baby that had many issues. A baby that saw hospital rooms more than you or your husband did. A child that had to be wired days upon days every few months. a child that had to be sedated many times for his MRI's. A child that went through a miraculous transformation. No he is not abnormal. He is a beautiful boy with a heart bigger than this universe. No, no he is not abnormal. He is beyond Normal. Yes Tuti is beyond normal. Him and his peers are by far better than all the children around. They are above them. They are smarter than them. No these kids are not abnormal.

Maybe maybe if they knew I was Arab too they wouldn't have said it so loudly. Yeah maybe. Maybe my people should be more educated. More exposed. They should know to never ever utter hurtful words towards a mother. A mother who spends most of her time trying her hardest to be strong. To be tough. To be a super mom. A mother who spends many days trying to find answers and solutions. No, no Tuti is not abnormal. He is just above and beyond these types of people. Yes. Above and Beyond...


  1. Thats the problem with Arabs. Always gossiping and talking bad about others. Thank god we live in Europe and America right now. Children with some kind of a disability or disease cant have a normal future in Arab countries because they are thought to be possesed by a jinn :S How u mean not educated? We, you, I and Tuti stand above these people, not necessarily above them in person but above their thoughts. I really want you just to ignore such comments. Tuti is put a label on in the form of a diagnosis but that doesnt mean he is abnormal. What is normal? Healthy? Meaning that when we get a flu we are abnormal as well? It hurts I can imagine but thats always the case when a mum hears something negative about her child. Next time confront them make them think about their lousy comments ;)

  2. Tuti and Batman should be proud to have a mom like you loving them to death ;) Cheer up hun <3


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