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.
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.
You will be walking some night
in the comfortable dark of your yard
and suddenly a great light will shine
round about you, and behind you
will be a wall you never saw before.
It will be clear to you suddenly
that you were about to escape,
and that you are guilty: you misread
the complex instructions, you are not
a member, you lost your card
or never had one. And you will know
that they have been there all along,
their eyes on your letters and books,
their hands in your pockets,
their ears wired to your bed.
Though you have done nothing shameful,
they will want you to be ashamed.
They will want you to kneel and weep
and say you should have been like them.
And once you say you are ashamed,
reading the page they hold out to you,
then such light as you have made
in your history will leave you.
They will no longer need to pursue you.
You will pursue them, begging forgiveness.
They will not forgive you.
There is no power against them.
It is only candor that is aloof from them,
Only an inward clarity, unashamed,
that they cannot reach. Be ready.
When their light has picked you out
and their questions are asked, say to them:
“I am not ashamed.” A sure horizon
will come around you. Then heron will begin his evening flight from the hilltop.
I hope you’ll have a very very happy birthday sweetie, and I want you to know that I love you so much and I thank God everyday for you.
I hope this year will be a shiny year for you just like you are my every morning sunshine.
“If I could let him be the boy he is, and let go of the boy he may have been.”
Very strong words and maybe a foolish hope.
How could she? When she’s thriving throughout the days, exhausting her mind and body to make it better for him!
But how would one make things better? By forcing a change, or by allowing the flow to pour in whatever direction?
Does she dare to just stop…and let him be?
Wouldn’t she slap her face because one day she simply didn’t know how to continue?
She knows that he is himself, but what if he still has more in?
I guess all you needed was your own bed and room to calm you down. And probably also the fact that you don’t have an NG tube any more.
On Tuesday, June 7th,2011 you got your G tube insertion.
The operation went fine and you tolerated feeds after 12 hours very well so you were able to go home tonight.
However, what made things challenging was the dissapointing fact that the “Ketogenic Diet” still isn’t well recognised at a big hospital as the SickKids Hospital.
Your father and me had to question every act the specialists wanted to do because simply none of them showed their full understanding of how critical your ketogenic diet is for controling seizures.
It felt like we were dictators who wanted to suppress any saying or act!!
But all we were doing was preventing you from the harm of giving you ignorantly any carbohydrates.
We got things under control and nothing was given to you without first checking with me or your father.
I have to say you seem so delighted that the NG tube is finally out 🙂
Tomorrow is going to be our first day alone with the G tube. I hope things will stay fine and no complications.
Sweet dreams love.
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.