Hi habibi Nemer, it’s been a very very long time since I’ve written anything for you on your blog. Life was keeping me busy…well, mostly with you 🙂
June 28, 2013 was your graduation ceremony from JK at the Conductive Education Academy. The ceremony was very nice and well organized. I loved the colorful t-shirts which the you and your classmates made with the help of the conductors and wore at the ceremony. The conductors made a great job to make it successful and to give you and your classmates all the freedom to be as much independent as possible. They recognized all the progress and achievements each and every kid made no matter how small or big it was. The whole thing was adorable and lovely. Your father and I are so proud of all the hard work you’ve been doing this year. kisses and hugs
Recently Nemer got his new Hart Walker. It’s like a cool metal suit with wheels, makes him look like a little robot 🙂 which I adore!
It is the best walker nemer has ever tried. It gives him all the support he needs. I think of the metal bars as extra hands holding him on the right spot and guiding him in the right way to take steps.
The first time he tried it he didn’t do much, I guess he was overwhelmed. but as he got more familiar and comfortable in it, and once he realized what he is capable of doing when he is in that supported position, lets just say sometimes I have to look for him in the house.
It holds him from underneath his elbows (which solves his leaning towards his right side) all the way to his ankles. He is NOT sitting in it. His body posture is in a perfect and natural standing position. He even use it as a stander whenever he prefers to just stay still watch TV, play with his favorite toys, or just watch his mama running around the house.
His steps couldn’t be more perfect. His feet don’t go out of direction, they don’t hang on the sides, they move naturally as his body moves forward. When I’m standing there calling for him to come to me and he is taking one step after the other my heart dances.
so proud of you Nammor.
Watching and observing, as if thinking: why so different? which way it is supposed to be, this adapted chair with it’s rigid edges and tight belts, or those little feet of them rocking the floor underneath?
My world, my words, my cries, my desires..they’re all silent. Their desires are loud and out there!
..oh yeey there is the light again, I love the secret laughs I have with it, but oh..their merry voices and dancing bodies seems fun..and more comfortable!
How I wish he can reach out to me somehow, something more than lefting up his head towards me and looking straight into my eyes.
Does he want me to walk away and let him be, or help him experience the floor rocking under his feet?
sometimes it feels like one of my foot is on a collapsing bridge, and the other on a standing one. And oh God it is hard.. to keep going on when every now and then the leashes whip to pull my spirit down.
Today, I dared and thought it:
It’s not about being fair or not, you just choose them randomly , then we kid ourselves thinking we are special.
“The obstacles of your past can become the gateways that lead to new beginnings”….The Sixth of December.
It’s amazing how the human being is given so many abilities and strengths, but would absolutely have no idea what is going to happen in the next second of his/her life.
Being a mother of a gorgeous special needs boy can be particularly so frustrating not to know if the next move is the right one or not. Being challenged with many difficult decisions which some of them can actually be fatal to the life of a medically fragile kid was not my idea of having kids and enjoying them.
But I adore my son Nemer, and to a point that I appreciate facing those challenges. Call me crazy, but I feel i’m gifted to do so!
The decision to put Nemer on the ketogenic diet to treat his uncontrolled seizures wasn’t easy at all. It certainly wasn’t anything like: “should I give my son this, or that allergy medication?”
Today is Dec 6th, 2011 which brings back memories of the period from Dec 6th,2010 until Jan 18th,2011. Those seven weeks were for me the most overwhelming, most terrifying, most emotional, and most powerful times I have ever lived with Nemer.
Drugged with five anticonvulsants, and facing the high possibility of getting Hemispherectomy;a type of epilepsy surgery usually performed to control uncontrollable epilepsy; my son’s scared eyes were crying out to me. I’m sure specialists were doing their job, their big meetings, and research to help him, but it was time for a parent’s instinct to work.
It’s been a year now, and since that experience when it comes to my family I rely on the most primitive resource I have; a mother’s instinct. That being said I still do my research and my readings , and boy I can get obsessed 🙂 After all I’m a protector.
I’m so grateful that you’re healthy and those ugly seizures are under control with the ketogenic diet. In fact you are seizure free. It has proved its effectiveness with four seizure medications being checked off the list and only one more to go. That is a big accomplishment, thank you God.
Your mama is blessed to have your baba’s strong support. Him and me are one when it comes to your safety.
I also want to remind you sweetie that through that difficult period friends and family’s support was critical. I’m so thankful to all those who made it easier on your father and me, and held our hands with their warm hearts. Thank you my family, in particular my sister Dina who eased my fear and worries. Thank you my relatives for being there for us. And thank you my friends for your advice and support.