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Out, Out, Out

Today is the first day for you Nemer, after almost two months at SickKids, to resume with your important specialists appointments. It is also your first day at Bloorview Kids Rehabilitation Hospital. You are going to start there working and having fun too with a physiotherapist, a pathologist, and an occupational therapist. You’ve already met today the physiotherapist who’s going to work with you on your gross motor skills, and the pathologist who’s going to help you and me communicate better and have more fun together.
I’m happy sweetie that you are getting back on track to do all the activities you’re used to enjoy. And actually you impressed me today how well you responded with the therapists because you responding good is what keeps me doing and trying what’s best for you.

Another thing special about today is that you and I went to the mall. What’s special about that is I wanted to see how you and I will enjoy our shopping time and at the same time keep up with your feeding schedule since you are on the new diet; The Ketogenic Diet. SO, how was it? It couldn’t be any easier. We had plenty of time to do all the shopping we wanted, you had your lunch on time and ate it well, and you enjoyed your walk in the mall.
I feel confident now of us going out while you are on your new diet , I just need good preparation ahead and voila.

Hope this good start will bring along the good work and the good outcome.

Nemer,You Are a Blessing

It’s December 31, 2010. Tonight is the twentieth third night for you at the Hospital for sick Children;The SickKids.

At 12:00 am the world is entering the new year 2011.  They say it’s a warm day for Toronto’s winter. Honestly I have no clue of what is going on outside this small sad and warm world of  SickKids since we were admitted to the hospital On December 6th.

“Epilepsy Disorder” ,is now written on your health records.

We live our lives thinking that we are above all those sort of scary things, avoiding the less fortunate ones that were chosen for some random reason so that we can feel good about ourselves, “which never made sense to me”.

But you my baby Nemer are not less fortunate. All those around you who are ignoring and avoiding you they just don’t realize what a wonderful blessing you are.  I get my strength from you to stand up in the face of every day’s struggle. You have purified my heart from the dark dots that were blinding me. After you I have a deep warm meaning for life. Now the tiniest detail is making my day a happy day.

So far it just seems that the modern medicine is not working for you. You keep challenging doctors day after day. All friends and relatives are concerned and calling. It’s like the whole world is looking towards you. And to me it feels that they all are amazed of how strong and determined you are.

This little body of you was able somehow to justify you from a sin others have accused you for ignorantly.

The struggle with your seizures is still on. Whenever us ;your father and me; and them think the survival robe that will get you out of the jungle you are trapped in is caught, you get pulled back in again.

What I know for sure is what your eyes tells me whenever I look into them : “Don’t you worry mama, being lost in the jungle is part of my and your destiny. It may take a very, very long time. But I just don’t feel the pain that you see. What I feel the most is your love and determination, and that is what’s gonna get me out of this trap.”

Love you Habibi.

Happy Eid AL-Adha habibi namoor. May all your days are eid and happiness.

Since you and I are in Chile alone, as a celebration of Eid I took you to the small park beside our apartment and you played on the swings. I also bought you a puzzle train. You can drive the train around, enjoy the cute colorful animals and at the same time learn how to do a puzzle as you shoild place each shaped animal in it’s correct location 🙂   So you can have fun and learn at the same time.

Enjoy habeebi

Where do I start from?

I can start by saying we are still in Chile and that I have extended our stay 3 more weeks. Let’s just say I’m pleased therapy wise and you that are still having fun with Ramon :)

It has been a while since I wrote to you and that’s because you got sick for a while and then so did I.  However, let’s look at the bright side, after you got sick I ended up taking you to a nutritionist who changed your life and mine with the specialized diet she recommended for your own needs.

I’m now very satisfied with the amount of food I give you, I know exactly how much you need every day of fibers, carbohydrates, fruits, etc…

I’m so proud of you that you are actually tolerating the new amount of food you are taking everyday based on the new diet.

I can feel and see habibi that you are going through new changes, and I keep my hands raised up to the sky for the best for you.

Love you a lot.

 

Always Pray to God

You know habeebi Nemer every day i say a prayer:” God, I ask you to bestow upon me and my son the good of this day, and keep away from us the evil of this day.”

Well, two days ago I had a bit of a tough day with some stuff that annoyed me, and I wondered if God hear my prayers. At some point of that day of course I was feeding you some chicken with vegetables and rice that i mixed very well in the food processor so you wont have hard time swallowing. As you were about to put one of the spoons in your mouth I felt there’s something hard in the food, so i checked it and there was a good size bone. If you had taken that spoon you would, God forbid, literally choked. I thank God very deeply that he made me feel that bone, and that moment I knew God is there for the stuff that really matters.

So Nemer, in your life you will face some good days, some tough days, and some tougher days but always always be sure that God is there looking after you and always remember to pray to him.

Happy Birthday Mama

Habeebi Namoor, today was mama’s birthday. I got to celebrate it with you , your friend Yussuf and my friend Oula in Santiago, Chile.

Some people said to me that they are sorry that I have to celebrate my birthday at the end of the world and away from my loved ones. I totally disagree with them, you know why Nemer? Despite the fact that in this day I miss your father, my sister Dina and my family this is the first birthday for me that I have doing something valuable, which is being here in Santiago doing therapy for you with Ramon. It is the first time that on my birthday I truly feel good about myself and know I’m fulfilling a right purpose in my life.

So thank you habeebi for giving me that feeling and thank you for being who you are, my sweet angel that fills my heart with love.

Love you

Don’t Need Motivation to Move

During the session today Ramon said something that I think is worth remembering. He said:”we don’t need motivation to move our bodies”. At the early stages of life a baby doesn’t need motivation in order to move his body, he doesn’t move because he wants to go to his mother or to go pick up a toy. A baby moves at the beginning because it’s an automatic response in the brain, and once the baby learn how to control his body the brain start using the movement in different situations like in a motivation situation.

What’s nice about what Ramon said is that I have been seeing different kind of therapists and specialists for over two years now and none of them ever put it that way. It makes so sense.

And I think that is the reason why we end up getting wrong therapy, becaus eof the wrong understanding; the base is wrong.

Thank you Ramon for making it easier for me and for Nemer.

Nemer Having a Laugh With Ramon

It was so funny. Nemer was so happy and he kept laughing while Ramon was talking to him and doing the exercise.

Such a nice moment.

Stromboli

Ok; without a doubt, for some reason you like Ramon. You keep smiling at him and thank God you tone with him  very nicely during exercises.

I had a funny thought today. Stromboli is one of your favorite  cartoon characters.You just laugh whenever you hear his voice. And I noticed today that the way Stromboli talks and the way Ramon talks are similar. So it’s possible that you are linking their voices together, hehe.

Whatever works for you habeebi. Most important thing you be happy.

Pictures from Chile