Nomaan is very young. And over the years, he has learned to deal with his disability. Until recently, he was never able to verbalize his feelings.
In his usual settings, he can navigate around very well in the dark, and he knows what to avoid and where the light switches are. He manages very well, unless he is somewhere new.
Over the years, his frustration with his condition would manifest itself when you would expect it... when he would run into things and get hurt, when he would trip, when he was fumbling with his hands searching for something he dropped on the floor, when he would get scared in the "dark", when he was in an unfamiliar place he could not navigate without assistance, etc. These situations usually ended in tears, or a tantrum, or Nomi desperately clinging to someone he trusted.
This was hard on everyone else, because at the time, we couldn't help him understand, or determine what it would take to comfort him. All we could do was hold him, show him our love, and he would calm down.
As he has gotten older, he has been able to tell us things, and ask questions.
He will say things now like; "I can't see", "where are you", "turn on the lights". As parents, this has been helpful. He can tell us what he needs, and he is cognisant of it. We then accommodate him. It doesn't make his condition any less severe, or any easier on him. In essence, it only makes it easier on those who are trying to help him.
The hardest moment for me was the first time he asked me the question, the question I always knew was coming, but was dreading.
"Baba, why don't my eyes work?" "Why can't I see like Beeya." (Beeya is what he calls his big brother Raafay).
You can imagine my reaction. I don't know if I handled it correctly or not. But I held him, and I told him, your eyes are sick, and they don't work as well as others, but we still love you and one day they will be fine. I told him God makes everyone different. And different isn't bad. I didn't know what else to say. I held back my own emotions, because in that moment, had I reacted the way my heart wanted me to, he would have felt my pain. I didn't want my pain to cause him pain. Kids are smart, and I am sure he sensed it. But as is the case with most kids who are 5 years old, he quickly distracted himself.
I later explained it to Beenish. In her much more eloquent, motherly way, she spoke to him. I wasn't privy to the conversation, but I am sure she did her best.
Since that day, he hasn't asked me the question again. I don't know if it is because he was happy with the answers given to him, or simply because he is happy with the life he has.
He still has his moments, and he probably always will. But he knows we all love him, and we will always be there for him.
Nomaan has been used to doctors since his birth. He goes to his regular pediatrician, and he goes to his eye doctor on a regular basis. He still hates shots, and especially hates eye drops and taking medicine, even though he has had to do all of it many, many times over the years.
We first started telling him about Philly, when we first heard of the trial. He obviously didn't understand. Once things became real, and tangible, and before our first trip, we started to prepare him.
We told him that we would go to Philadelphia, and the doctors there had to do some tests, and after the "testesses", as he calls them, are over, the doctors there may be able to fix his eyes.
His fear of doctors and the unknown outweighed whatever desire he had to have his eyes fixed, and at first he didn't want to go. He simply said "I don't need my eyes fixed". We still kept talking about it, and reinforced the positive.
Once we were in Philadelphia, the doctors would show him some of the things they were looking at...scans and pictures. They were able to explain to him that his eyes were sick, and they wanted to make them better.
One of the scans they use, that shows the thickness of the retina, shows a natural dip in the retina... Nomi sees this dip and asks "oh, that's the part that's sick?"
He now speaks of Philly in a much different tone. He likes the maze doctor, Dr. Dan, a lot, and wants to play the maze game with him again. He also knows that he is going to go back quite a few times, and they will fix his eyes so that he can see better in the dark and he won't be as scared anymore. He is excited to play with his cousins who live there, Saaira and Aaliya again. He has always loved travel, especially airplanes, airports, and hotels... so that is a huge plus.
He also is excited about getting more goodies from mom and dad... I think he is well aware of the fact that Beenish and I will bribe him as much as is needed to make sure he completes this process. I'm sure he is also expecting more coke. Yes, we are those parents. And yes, he has learned that we are those parents. Sometimes kids know their parents better than parents know their kids. :)
In his usual settings, he can navigate around very well in the dark, and he knows what to avoid and where the light switches are. He manages very well, unless he is somewhere new.
Over the years, his frustration with his condition would manifest itself when you would expect it... when he would run into things and get hurt, when he would trip, when he was fumbling with his hands searching for something he dropped on the floor, when he would get scared in the "dark", when he was in an unfamiliar place he could not navigate without assistance, etc. These situations usually ended in tears, or a tantrum, or Nomi desperately clinging to someone he trusted.
This was hard on everyone else, because at the time, we couldn't help him understand, or determine what it would take to comfort him. All we could do was hold him, show him our love, and he would calm down.
As he has gotten older, he has been able to tell us things, and ask questions.
He will say things now like; "I can't see", "where are you", "turn on the lights". As parents, this has been helpful. He can tell us what he needs, and he is cognisant of it. We then accommodate him. It doesn't make his condition any less severe, or any easier on him. In essence, it only makes it easier on those who are trying to help him.
The hardest moment for me was the first time he asked me the question, the question I always knew was coming, but was dreading.
"Baba, why don't my eyes work?" "Why can't I see like Beeya." (Beeya is what he calls his big brother Raafay).
You can imagine my reaction. I don't know if I handled it correctly or not. But I held him, and I told him, your eyes are sick, and they don't work as well as others, but we still love you and one day they will be fine. I told him God makes everyone different. And different isn't bad. I didn't know what else to say. I held back my own emotions, because in that moment, had I reacted the way my heart wanted me to, he would have felt my pain. I didn't want my pain to cause him pain. Kids are smart, and I am sure he sensed it. But as is the case with most kids who are 5 years old, he quickly distracted himself.
I later explained it to Beenish. In her much more eloquent, motherly way, she spoke to him. I wasn't privy to the conversation, but I am sure she did her best.
Since that day, he hasn't asked me the question again. I don't know if it is because he was happy with the answers given to him, or simply because he is happy with the life he has.
He still has his moments, and he probably always will. But he knows we all love him, and we will always be there for him.
Nomaan has been used to doctors since his birth. He goes to his regular pediatrician, and he goes to his eye doctor on a regular basis. He still hates shots, and especially hates eye drops and taking medicine, even though he has had to do all of it many, many times over the years.
We first started telling him about Philly, when we first heard of the trial. He obviously didn't understand. Once things became real, and tangible, and before our first trip, we started to prepare him.
We told him that we would go to Philadelphia, and the doctors there had to do some tests, and after the "testesses", as he calls them, are over, the doctors there may be able to fix his eyes.
His fear of doctors and the unknown outweighed whatever desire he had to have his eyes fixed, and at first he didn't want to go. He simply said "I don't need my eyes fixed". We still kept talking about it, and reinforced the positive.
Once we were in Philadelphia, the doctors would show him some of the things they were looking at...scans and pictures. They were able to explain to him that his eyes were sick, and they wanted to make them better.
One of the scans they use, that shows the thickness of the retina, shows a natural dip in the retina... Nomi sees this dip and asks "oh, that's the part that's sick?"
He now speaks of Philly in a much different tone. He likes the maze doctor, Dr. Dan, a lot, and wants to play the maze game with him again. He also knows that he is going to go back quite a few times, and they will fix his eyes so that he can see better in the dark and he won't be as scared anymore. He is excited to play with his cousins who live there, Saaira and Aaliya again. He has always loved travel, especially airplanes, airports, and hotels... so that is a huge plus.
He also is excited about getting more goodies from mom and dad... I think he is well aware of the fact that Beenish and I will bribe him as much as is needed to make sure he completes this process. I'm sure he is also expecting more coke. Yes, we are those parents. And yes, he has learned that we are those parents. Sometimes kids know their parents better than parents know their kids. :)
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