I’m writing to you while you’re sleeping on my shoulder in the emergency department at SickKids hospital, room 22.
You’ve been admitted to the hospital because you’re dehydrated due to not drinking enough fluids. And since you’re on the ketogenic diet and one of your meds have the side effect of kidney stones, enough fluids intake is critical for you.
So far they are helping you out by giving you fluids through the IV. They’ve tested you for kidney stones, you’re fine 🙂
A new plan will be discussed tomorrow morning.
Hope you and I will have a good sleep tonight.
Sweetie Nemer, March 26 is the day your grandfather left us. Remember baby that loosing him is loosing so much.He was blessed to see you before he passed away, and you were honored to be held between his arms. He was a wonderful man.
Dad and mom miss him a lot.
This video was a tribute mama made in the memory of him.
Nemer Sweetie you got me worried today. You had a good star of the day but then you woke up from your afternoon nap crying and it seemed to me that you were in a lot of pain.
What bothered me the most is that I couldn’t tell what was wrong with you! And I guess THAT what got me worried for the rest of my day.
I still need to guess and think hard and search between clues. Sometimes I would stare at you like an unprepared student starring at his exam paper not knowing what is the right answer.
It’s hard for one to not be able to express, as much as it’s hard on someone to not know how to deliver for a beloved one.
All I could deliver today was to hold you close and walk around hoping that my body’s warmth will ease your pain somehow.
Sleep tight sweetie. Hope you’ll have a better day tomorrow.
You have a new buddy now. His name is tag junior. He likes to read books with you with many different interesting voices and sounds. You love him. Honestly I do too 🙂
Reading time is so much fun for you with your new buddy. He greats you with your own name each time you turn him on, wherever you place him on a book he makes fun sounds,he sings, he imitates animal sounds, he read alphabets and teaches you about colors and shapes and so many other fun and educational things. And when you want to say goodbye for him he wishes you a wonderful day 🙂
It’s such a cool tool to enhance reading time.
Hi baby Nammor,
I thought it’s going to be cute to remember that today is the first day for your eye to get swollen. You woke up this morning with the upper led of your left eye red and swollen a bit. We call it in our mother language “fasfoosa”. You look cute with one eye red and half open ;p
Although I can imagine how much it’s bothering you especially while watching your favorite cartoons.
Hope it gets better soon sweetie.
Brings warmth into my soul.
Sends my heart into rapture.
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.
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.
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.
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.
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.
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.
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.
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.
Your first session with Ramon was last Tuesday and it was a bit tough for you since you haven’t practice exercises for almost a week and a half. But by now you are picking up and responding beautifully ; bonito in Spanish.
You are having two sessions a day. One at 9:30 am and the second one at 4:30 pm.
The weather in Santiago is getting warmer. Oh and Chileans are celebrating their independence day. The Chilean flag is on the cars and on houses windows. I honestly don’t know anything about it, but i will ask Ramon about it today. It’s always interesting to learn the different countries heritage and history.
ok, gotta get you ready for your second session for today.
SO, we are in Santiago again. We’ve arrived here on Saturday, September 11.
Coming here arouse in me a mix of feelings. Happy and grateful for you Nemer to receive an excellent physiotherapy. Hopeful that everything will go ok and you’ll get the best out of the therapy. Strong since I’ve determined to do something and I did it. Lonely since your dad is not with us this time;who by the way I miss like crazy. And most of all I got flashbacks from our earthquake experience the last time we were here, but I guess I’m over it now , although I keep myself prepared and alert.
This time habeebi Nemer it’s just you and me.
Each night I pray to God for a successful trip,amen.
Tomorrow is your first session with Ramon Cuevas. The best of luck habeebi.
It broke my heart how much you cried today. What upset me the most is that I wasn’t able to know what’s wrong. Something definitely was bothering you to the point that Celine Deon voice and Pinocchio did not cheer you up.
Oh well, I guess this is just the way it is; it’s a part of you being a kid and me a parent. Some days are “relatively speaking” nice and easy and others are tough.
The good thing is that you were able to fall asleep fast. Hope you’ll have a better sleep tonight and a better day tomorrow.
For a while now each night at 9 pm is when you get ready for your bedtime. You go up to your room, change diaper, wear your pyjamas, drink your bottle of milk, brush your teeth and then mommy read you a book. And boy do you like it when I read to you. You keep smiling, touching the book and looking at my face while I’m reading. I really love that moment. The way you smile and look at me just makes me sleep with a smile.
habeebi Nemer, yesterday you had lots of fun at the music camp. With the kids you sang Hello song at the beginning. Then there was music time, stroy time “which you really enjoyed”, snack time, gym time “big smile while on trampoline”, and finally goodbye song.
The therapist said you were great for the first day.
I did notice that you were in a happy mood the whole day. Tomorrow is your second day at the camp.
Oh habeebi Nemer, it has been a while since I wrote for you. Lets just say that my brain was very busy with thoughts and plans for you.
Right now I’m writing while you are at the music express camp at blueballoon. It’s your first day at the camp and the first time ever for me to leave you with ‘i can say’ strangers. I’m sitting just outside the room where the camp is taking place. I can hear the music, the therapists singings, and the sound of different activities you’re all doing together.
This morning I was so excited about it and to be honest a tiny bit nervous as if it’s my own first day at school. I guess this would be a practice for me and you for you real first day in school.
The therapists are so lovely and it sounds that you and the kids are having so much fun.
Enjoy my love.
So today was your and my first time in Wonderland. We went (you, your father and me) with aunt Dina, aunt Amani, Eyad Rawan, aunt Amal, Dunya, xena, and Mohammed Ali.
We all enjoyed our time on the rides. There was rides that suited you at Planet Snoopy. You went on the Swan ride, the mini train ride, and merry go round ride.
Next summer you’ll go on the rides that will suite you then and are faster 🙂
Habeebi Namoor today you did a small response that really impressed mom.
Every night you brush your teeth before you go to bed with a cute tooth brush that makes bill sounds when you shake it. Every time I shake it for you then touch your lips with it so you would open your mouth to brush your teeth.
Today the minute I shook the brush you smiled and opened your mouth. It was so adorable and smart of you. It’s these small things that you do the impresses me all the time.
Love you so much