The best and worst day ever was today

[amal 4]

Hey guys n gals. Please leave this post in mena because I very seldom venture out of here and this group is where my friends are.

I am having a roller coaster of emotions today and just felt that you've all shared with me so now it's my turn to ask for some shoulders.

First off, we closed on our house today and had the electric turned on so we're ready to start cleaning it up to our liking and get our stuff moved in. yay for good stuff

Now here's the bad stuff....My son had to get glasses this past Monday. We found out that his right eye had moderate impairment and his left eye had compensated for so long that it was now mildly impaired. So he got glasses....

Then on to what happened today. Last week, he failed his hearing test at school, in both ears....TWICE... So I got him an appointment to see a hearing specialist. We go today and find out that he has moderate / severe hearing loss IN BOTH EARS and has to have hearing aids because it will only get worse as he gets older. We will go on Monday to have both of his ears molded for his new hearing aids.

This has absolutely broken our hearts. He barely hung on to life when he was diagnosed with Severe Aplastic Anemia and survived years of weekly transfusions of platelets, red blood cells, white blood cells..... and had to endure painful injections 4 times a day for what seemed like forever. Then he has these problems with his eyes so he gets glasses and is terrified of being made fun of...

Now this........ We have this issue with the schools hearing tests only to find out that he has moderate hearing loss in 1 ear and mod/severe hearing loss in his other ear and now has to have a hearing aid in both ears. He told me today that he is scared that people will call him a freak and say he must be stupid. My God, he's only 9 years old and all this has to happen...

I maintained my composure until I got him dropped off at his school and when I got home, I couldn't keep the tears back any longer. I just sat in my car with my head on the steering wheel and cried for like 10 minutes. He's not a normal kid. He's special in ways that one can only understand after they've met him. I think Jackie, Aymerlu, Gabi, Noura, MBP, VP, and anyone else that met him could vouch for that. It really is sad that he is going through all of this and even though I know I have no control over it, I still feel responsible and feel like it's my fault for giving him these bad genes. . . . ugggg

Sorry, I'm just really sad for him today and needed to vent where I felt I could get some support. My husband was super wonderful coz when he found out the situation he said to me "don't worry, we will care for this. I will put my trip to Jordan on hold to make sure that we can afford the best hearing machines that are not big and ugly for him" Even when he and I have our issues, these are the things that remind me why I love him so much. He didn't have to say that but the fact he is willing to put his life on hold for his step-son truely means the world to me.....

Thanks for letting me cry here.

Amal

[Nourddine4Ever 0]

Poor little guy. I dont know you or your son. But i know how cruel kids can be! I absolutley hate that kids are that way but it is a fact that they are in many ways no matter how old they are! He is miracle child to have survived thru what he has so far he will get thru this small hurdle as well! Just let him know he is no diffrent then any other 9yr old! He special in his own way!

Brittany

[sara..... 371]

awe Amal, im sending lots and lots of huggggs ur way, but u know what ur little guy made it, yep he needs glasses but he can see, and yup he needs devices to hear but he can hear, from the way u talk about this little guy he is the sun that shines so bright for both of you. He is the blessing that makes everyone feel fuzzy inside.

my prayers are with you guys

sara

[jimjenny 0]

Hug! It is always better tomorrow!

Hey guys n gals. Please leave this post in mena because I very seldom venture out of here and this group is where my friends are.

I am having a roller coaster of emotions today and just felt that you've all shared with me so now it's my turn to ask for some shoulders.

First off, we closed on our house today and had the electric turned on so we're ready to start cleaning it up to our liking and get our stuff moved in. yay for good stuff

Now here's the bad stuff....My son had to get glasses this past Monday. We found out that his right eye had moderate impairment and his left eye had compensated for so long that it was now mildly impaired. So he got glasses....

Then on to what happened today. Last week, he failed his hearing test at school, in both ears....TWICE... So I got him an appointment to see a hearing specialist. We go today and find out that he has moderate / severe hearing loss IN BOTH EARS and has to have hearing aids because it will only get worse as he gets older. We will go on Monday to have both of his ears molded for his new hearing aids.

This has absolutely broken our hearts. He barely hung on to life when he was diagnosed with Severe Aplastic Anemia and survived years of weekly transfusions of platelets, red blood cells, white blood cells..... and had to endure painful injections 4 times a day for what seemed like forever. Then he has these problems with his eyes so he gets glasses and is terrified of being made fun of...

Now this........ We have this issue with the schools hearing tests only to find out that he has moderate hearing loss in 1 ear and mod/severe hearing loss in his other ear and now has to have a hearing aid in both ears. He told me today that he is scared that people will call him a freak and say he must be stupid. My God, he's only 9 years old and all this has to happen...

I maintained my composure until I got him dropped off at his school and when I got home, I couldn't keep the tears back any longer. I just sat in my car with my head on the steering wheel and cried for like 10 minutes. He's not a normal kid. He's special in ways that one can only understand after they've met him. I think Jackie, Aymerlu, Gabi, Noura, MBP, VP, and anyone else that met him could vouch for that. It really is sad that he is going through all of this and even though I know I have no control over it, I still feel responsible and feel like it's my fault for giving him these bad genes. . . . ugggg

Sorry, I'm just really sad for him today and needed to vent where I felt I could get some support. My husband was super wonderful coz when he found out the situation he said to me "don't worry, we will care for this. I will put my trip to Jordan on hold to make sure that we can afford the best hearing machines that are not big and ugly for him" Even when he and I have our issues, these are the things that remind me why I love him so much. He didn't have to say that but the fact he is willing to put his life on hold for his step-son truely means the world to me.....

Thanks for letting me cry here.

Amal

[amal 4]

Poor little guy. I dont know you or your son. But i know how cruel kids can be! I absolutley hate that kids are that way but it is a fact that they are in many ways no matter how old they are! He is miracle child to have survived thru what he has so far he will get thru this small hurdle as well! Just let him know he is no diffrent then any other 9yr old! He special in his own way!

Brittany

awe Amal, im sending lots and lots of huggggs ur way, but u know what ur little guy made it, yep he needs glasses but he can see, and yup he needs devices to hear but he can hear, from the way u talk about this little guy he is the sun that shines so bright for both of you. He is the blessing that makes everyone feel fuzzy inside.

my prayers are with you guys

sara

Thank you both. He really is my whole world and we've fought so hard to keep him here that it makes it that much harder to find out that he has yet another hurdle to cross. I thank God that he is mine because he is such a sweet child. I know that God has a reason for everything and I'm trying to keep that in mind but it still doesn't keep me from wondering why so many bad things had to happen to my 1 and only child. I wouldn't wish it on anybody elses child(ren) but so much in such a short time. It's just kinda hard to swallow... in the end... praise god for everything good and everything bad. That's all we can do...

[Robina 0]

Amal,

I am sure he will be fine. He is strong and you are strong. You will make it through this and he will have a great life. I'll keep you all in my prayers.

Robina

Hey guys n gals. Please leave this post in mena because I very seldom venture out of here and this group is where my friends are.

I am having a roller coaster of emotions today and just felt that you've all shared with me so now it's my turn to ask for some shoulders.

First off, we closed on our house today and had the electric turned on so we're ready to start cleaning it up to our liking and get our stuff moved in. yay for good stuff

Now here's the bad stuff....My son had to get glasses this past Monday. We found out that his right eye had moderate impairment and his left eye had compensated for so long that it was now mildly impaired. So he got glasses....

Then on to what happened today. Last week, he failed his hearing test at school, in both ears....TWICE... So I got him an appointment to see a hearing specialist. We go today and find out that he has moderate / severe hearing loss IN BOTH EARS and has to have hearing aids because it will only get worse as he gets older. We will go on Monday to have both of his ears molded for his new hearing aids.

This has absolutely broken our hearts. He barely hung on to life when he was diagnosed with Severe Aplastic Anemia and survived years of weekly transfusions of platelets, red blood cells, white blood cells..... and had to endure painful injections 4 times a day for what seemed like forever. Then he has these problems with his eyes so he gets glasses and is terrified of being made fun of...

Now this........ We have this issue with the schools hearing tests only to find out that he has moderate hearing loss in 1 ear and mod/severe hearing loss in his other ear and now has to have a hearing aid in both ears. He told me today that he is scared that people will call him a freak and say he must be stupid. My God, he's only 9 years old and all this has to happen...

I maintained my composure until I got him dropped off at his school and when I got home, I couldn't keep the tears back any longer. I just sat in my car with my head on the steering wheel and cried for like 10 minutes. He's not a normal kid. He's special in ways that one can only understand after they've met him. I think Jackie, Aymerlu, Gabi, Noura, MBP, VP, and anyone else that met him could vouch for that. It really is sad that he is going through all of this and even though I know I have no control over it, I still feel responsible and feel like it's my fault for giving him these bad genes. . . . ugggg

Sorry, I'm just really sad for him today and needed to vent where I felt I could get some support. My husband was super wonderful coz when he found out the situation he said to me "don't worry, we will care for this. I will put my trip to Jordan on hold to make sure that we can afford the best hearing machines that are not big and ugly for him" Even when he and I have our issues, these are the things that remind me why I love him so much. He didn't have to say that but the fact he is willing to put his life on hold for his step-son truely means the world to me.....

Thanks for letting me cry here.

Amal

[RAKASA 0]

Amal, I'm so sad to hear this about Traven. Please know you are in my thoughts and prayers as are Trav & Noor. He will get through this - you all will. He's a strong kid and he's more brave than he gives himself credit for. You have my number if you ever need something.

Noura

[amal 4]

noura, I may have to use that number. When he was sick it wasn't as hard coz he was young so if i cried, I could just say i was sad and he was ok. Now he's old enough to understand whats up so I have to hide that i am hurting for him. We talk about this and so far have decided his new ears will be spy gadgets so he can eaves drop on other ppl when they are whispering back and forth lol This has cheered him up some! It's when I'm alone and have time to think and reflect on all he has been through that I just break down. ugg

[sara535 15]

your post made me sad for your sweet boy, but at the same time he is so very very lucky to have a mom like you

I know you will help him to see the bright side and cros this hurdle as he has so many others.

Hang in there

and CONGRATULATIONS on the house!!

[raymaga 25]

I understand how you are feeling because I had a child who was "different" and had to endure more hardships than a young child should have to.

My daughter, Kaely, who is now 21 years old, suffered 3rd and 4th scald burns to 20% of her body when she was 6 years old. A pot of chicken soup that was cooking on the stove and Kaely climbed up on the kitchen counter beside the stove to get crackers for the soup. When she jumped off the counter, the pot caught on her shorts and the whole pot of boiling soup poured down the left side of her body.

She was rushed to the emergency department and spent one month in the hospital, after receiving skin grafts. After she returned to school, she had to wear very tight Jobst garments which help the burn scars heal better. She looked like E.T. and children, as well as adults, always starred at her and some made rude and hurtful comments.

As a Mother it was the hardest time of my life to see my baby girl have to be so different from all the other kids at school. With a lot of encouragement from her family, friends and teachers, she grew up to be a confident happy girl and recovered from the burns completely in about 3 years.

She still has, and always will have, scars from her head down to the top of her left leg, but she wears a bikini, strapless and sleeveless clothing and is very sympathetic to people who are "different". She volunteers every year at a children's burn camp for burn survivors up in Canada, the camp she attended herself as a camper for 11 years.

I also believe that things happen for a reason, and she would not be the lovely young woman that she is today had this experience not happened to her.

Your son will almost certainly endure some hardships as well in his life, but because he has a wonderful Mom and step-dad like he does, he will survive this as well. And who knows what his "purpose" will be as a result. Maybe he will end up helping other children later in his life just like my daughter does now.

Bless you all....

Edited January 23, 2009 by raymaga

[CasandraYounes 0]

Amal, though I don't know you or your son I was touched when I read your post. I know you are sad to hear that. Kids now a days can be really ugly, but it seems to me that you and your husband will be the strong hold that he needs. Both my sister and I have disabilities and grew up with them, so I can just imagine what you must be feeling, not as a mother, but as a friend that understands your pain. He is going to need a lot of support and only his family will know how to give it to him. You know doctors say one thing, but with the grace and will of God and time. You never know how things might improve, but just know you will get through this. Your son will come out of this stronger than you think. I will keep him and your family in my prayers and I hope things get better.

[anitacastillo 0]

You are an awesome mom!!

Congrats on the home!!

[HLM 1]

i have tears in my eyes as i write this....i wdnt dare say i know how u feel...but my heart goes out for u sister and i will always remember him in my prayers. i also agree that this will make an even better person of him....he will grow to be even sweeter and more compassionate....sister think good things and always have faith....all i can say is...u never know!

[faryan 4]

Amal, Im sorry to hear about your son and also feel your sadness. It is indeed difficult having to put a strong face to him when you feel the way you feel inside. It will be challenging for him and for you and hubby, but Im sure with your love and support he will be fine and able to adjust.

Farha

[SaadBell 0]

Amal,

I just logged on and read your story, first off oh sweetie I wish I was there to give you a big hug. Now never let this problem get you down, keep your chin up for your son has a special place in the universe. I grew up with diabetes, I hated going to school and knowing I was different, had some rough periods. The one thing I keep with me is the story of Einstein. I read his biography and it made a big impact on my life. Einstein didn’t walk till he was at least 4 years old, didn’t start to speak like normal babies, he was considered slow. When he was in elementary school his father was told by his teacher that Einstein should consider a trade school, since they saw no future for him at University. He did make it to University, but he was not the star student and his professors didn’t care for him. When he barely graduated all his friends got jobs, but not Einstein, no one would hire him. This was the man that changed the world of Physics. So you tell your son this is a sign for greatness, for anyone that has made a tremendous impact on society has faced adversity in some form. I used to tell my daughter the story all the time when she had troubles in school, and now she is in Graduate school. So hang in there, your son maybe the one to find the cure for cancer. You ever need a shoulder I am here, your son is lucky to have you and your wonderful husband as support systems. You are in my thoughts.