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.
“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.
Hey bubbi, I just thought i’ll drop by to tell you what’s been going on lately.
Well, you’re are doing very well in the conductive education sessions. You tolerate almost all the exercises. You are doing very nice unsupported setting, yes.. you are setting on your own now 🙂 I still have to be there to prevent the sudden backward collapse, even though it’s not occurring as much. Yeeey for Nemer.
Your grasping on objects is really improving. You have this favorite colorful and shiny shaker that you keep holding onto it.
You are very aware of what’s going on around you. You are directing your looking intentionally, you understand lots of directions.
Stepping…I think the right thing to say: it is there.
Nice and complete steps, big huge steps, you are even stepping on the stairs.
You have a pony walker now and it makes my heart dance to feel you moving around me in the house with your tiny feet.
I’m so proud of you habibi, you have have come a long way.
on top of everything you are having so much fun at your nursery school AND during therapy sessions. who am i kidding, me too 😉
Tomorrow Nov 17th, 2011 is your third MRI scanning since you were born.
I hope it goes well..and gives us more clear answers.
I wish one day sweetie you will read my writings and thoughts, and you will understand what I really wanted to say.
This is a video that I like to watch at moments that seems like falling back moments.
You may find it one day as an inspirational touch.
You were so happy on your first day at school. Kids played and shared with you and the teacher was very nice 🙂
I’m very excited for you Nemer.
amazing how this song makes you almost dance 🙂
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.
Sitting by yourself 🙂
“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?
One of the precious moments with you.
It’s one of those summer days in Toronto; warm, damp and rainy.
Lying on bed with you is the best way to spend such a day.
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.
After your addmission to SickKids hospital on Monday and getting an NG tube we were discharged wednesday late afternoon.
Thursday morning you woke up with your shirt wet and soaked up with green and yellow colors. Your NG tube was leaking non stop.
I checked the placement of the tube then made some phone calls to get an advice of what’s the best thing to do. The GI clinic nurse at SickKids said it’s nothing to worry about and to just tape the tube.
My instinct told me something is wrong, so I prepared meals for you for a full day and drove to SickKids. Good thing your baby sitter was with us to help.
At the hospital in the emergency department we had to wait 6 hours until you were seen by a doctor. An X-ray was done. It showed that the NG tube was in your stomach too deep. It made total sense for you to cry in pain when I gave you your medications through the tube. But somehow it wasn’t a concern at all for pediatricians when you were admitted at the hospital when I told them that you are crying!!
The NG tube was pulled out two inches. I insisted that they do another X-ray to put my mind at rest. The second X-ray showed the NG tube was still too deep. They pulled it out another two inches. After that I gave you some water through the tube and you were fine.
Finally we left the hospital at 12 am.
So sorry sweetie you had to go through all that only because a specialist didn’t want to pay much attention to a mother’s worries.
You’re happy with it 🙂
well ofcourse especially that now you don’t have to taste your medication’s awful taste.
And I’m happy that you’ll be able to take all the fluids you need without forcing you.
I know it’s still somewhat uncomfortable for you. You’ll get used to it baby, it’s only temporary.
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.