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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

Saturday, November 10, 2012

A Red Door...

A door opens and I went through it...This post is inspired by one of the most amazing people, Temple Grandin. I have read many articles about her and read many of her own articles but only recently I was told by one of my very very good friends about a movie of her life. And sure enough I watched it tonight.

Amazing. Amazing story. It made me think. Think a lot. Think and wonder. Wonder about Tuti and how he views things. How he views people. How he views, how he views me. Does he see words like a sequence of pictures as well? I know for a fact he has an amazing memory. But it's very selective. I wish, I wish I can go inside that mind of his. I wish, I wish I can live just one day, only one day in his body. Wouldn't that be wonderful. To find out how he really feels. How he sees things and hears them.

Tuti has been very ill for ten days now. It started with an innocent cough. The cough then transpired to a runny nose and from then on a fever started that just persisted. And his nose then became so blocked he was hardly breathing. And the cough, the cough was non stop. At one point I thought I was going to end up taking him to hospital for oxygen. I took him to the dr and he told me to give him Benadryl just so the mucus can dry up and he can breathe better.

Tuti takes his seizure meds in the syringe with no problem. No problem at all. So I thought giving him Benadryl would be easy as well. WRONG! The minute he saw the red liquid in that syringe he freaked. He just went out of control and started screaming and crying profusely. I have never seen him react this way before. I had to give it to him. I had no choice. I had to come up with an idea. So I covered the syringe with kitchen paper and the first time I tried that, he looked at the syringe made sure there was no red and took it. He did resist but it wasn't as bad. The second day I tried the same trick but he is way too smart to be fooled. He saw the tip of the syringe and it was red. He kicked, he cried he pulled my hair. He was inconsolable. I waited until he calmed down and just forced it down his mouth. I felt so mean but again I had no choice.

But what is it with the red? Why does red scare him so much? He doesn't react this way with red objects in general. But why does he go all crazy when he sees the red liquid? Blood? But Tuti has never seen blood or even know what blood is. While Tuti was scared from red, I was enthralled by it. A few weeks after I moved to the US in our house, the door bell rings. An old man comes asking for his granddaughter. I had no idea what he was talking about but then he said " they told me she is in the gray house"

Gray??? My house isn't gray. My house is white. White with very dull trimmings. I guess thats why he thought it was gray ughhh. Ever since then I've been on my husbands case to change the colour. But hubby kept telling me it wasn't the right time. And as usual It was NEVER the right time. So I had to endure the dullness of the house. But last week, last week I decided enough is enough. Time to give the house a mini face lift :) And so project red started. I painted the decorative shutters and door red. Home Depot the place that I hated with a vengeance became my new bestfriend hehe. The house doesnt look dull anymore and im loving it. And just like Temple, just like her a new door opened and I went through it. And through that door, that red door Im definitely going to find more ways. More ways to help my Tuti. Because this time, this time the door is not gray anymore. No. Its not. Its a new door. A New Cheerful Door. A Red Door...

This is what I do to the syringe :(

And this was my painting project :)


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