Re: Reality

[Guest guest]

Jeanie - I've been where you are - many many times. I'm going to

send you something privately that I wrote a while back. I think you

will appreciate it. What you are feeling is normal. Everything

will be okay. I promise. Trust me? Everything will be okay. We

are all here for you. I'm glad you can share your feelings. Talk

to you soon. Hugs.

- H

>

> Okay. I woke up at 5:30 a.m. with one thought in my head.

>

> My son has Silver Syndrome. I haven't been able to say it

> and truly believe it until now. I have no idea why my mind

decided

> to accept it at 5:30 in the morning. I raced into my sleeping

son's

> room after getting a bottle from the fridge and held him in my

> arms. Looking at his beautiful face I reminded myself how lucky

we

> are that he's here at all. I know that there are far worse things

> than Silver. I know that Brockton can still live a full

and

> happy life. I know that we have been blessed with this child. I

> just wish I knew what to expect from this!

>

> I took Brockton to be wieghed 2 days ago. He still hasn't reached

> 16 lbs. Yesterday I logged his wieght into his baby book. He's

been

> 15 pounds and however many ounces for over 2 months now. Until

this

> morning it hadn't really hit me. My son has Silver

Syndrome.

>

> I don't think it would be affecting me so much if we had a Dr.

that

> took it seriously. They diagnosed him and sent us on our way

> without even explaining what it is! It was almost like they were

> telling us that he has a hangnail. DAMN IT! I want them to take

it

> seriously! This is my son! This is the child that, despite all

> odds, MADE IT! He deserves to be paid attention to!

>

> How do I become proactive on my sons behalf when there are no

> professionals around here for me to DEMAND that my son not be

swept

> under the rug? We haven't got money. We don't even have a decent

> vehicle to drive out to NYC to see Dr. Harbison even if we could

get

> an appt. to see her.

>

> I want to SCREAM AT THE TOP OF MY LUNGS until I can't scream

> anymore. Even though it's not the worst thing in the

world.......I

> am overwhelmed with sadness this morning. My son has

Silver

> Syndrome.

>

[Guest guest]

Jeanie,

Yes, your beautiful son has Silver Syndrome. And it just plain bites

that he and you have to deal with this for the rest of his life. But remember

you

have now met some of the most wonderful people on this planet BECAUSE

he has RSS and we will ALL help you get through this. I know it's scary,

frustrating, depressing, and hurtful. Believe me, I still live with those

feelings.

Just remember we are in this together and we will get through it. And our kids

are lucky to have us for their parents.

Jodi Z

[Guest guest]

Dear Jeanie

Yes, you are right, it is not fair. And I know the minute we start to feel sorry

for ourselves and our child, we get this over riding sense of guilt because

there ARE kids out there with worse problems, but you know what? That is of

little consolation when it is your beautiful baby.

I truly understand how you feel. The best thing you did for your son is to find

this place. You will become knowledgeable and you will become empowered to fight

for him. Many of us don't have the opportunity to see Dr. H. and yet we manage

to fight the good fight and in the end get what is best for our child. For some

of us the fight lasts a little longer than the others, but you would be

surprised what you are capable of. I am thinking of Leah right now. We are both

in Canada but she is having great difficulty getting GH and I didn't have as

great a problem. But between us we will make sure, come hell or high water,

Olivia will get the GH.

You too will find the strength to carry on in fact you are doing it already. You

love your little boy with all your heart and soul.....sounds obvious?? Not so, I

read every day in the news stories about poor children who are abused and

mistreated in the most horrible situations. Your son is so lucky to have you and

you have already made the best out of a terribly unfair situation.

Jodi Z. said it well. No matter how old our children are, we have our up and

down days. She has been living with the cloud of RSS longer than any of us, I am

getting up there in years as well and yet some days I still shake my head in

disbelief that this could happen to me or to my precious baby boy.

You are in the stages of mourning, go with the flow. Yes your son is alive and

you can hold him and kiss him any time you want, but at the same time that dream

of a perfect baby did die. And that is what you mourn.

Never ever worry that you should not yell and scream at the top of your lungs at

how unfair life can be sometimes. We have all been up on that mountain yelling

many, many times and we truly understand what it feels like.

We are here for you whenever you want to scream and know you do it in a safe and

loving environment because we care!!

Give your little guy a great big fat kiss and hug, take a deep breath and

remember to be good to YOU too!

Debby

Reality

Okay. I woke up at 5:30 a.m. with one thought in my head.

My son has Silver Syndrome. I haven't been able to say it

and truly believe it until now. I have no idea why my mind decided

to accept it at 5:30 in the morning. I raced into my sleeping son's

room after getting a bottle from the fridge and held him in my

arms. Looking at his beautiful face I reminded myself how lucky we

are that he's here at all. I know that there are far worse things

than Silver. I know that Brockton can still live a full and

happy life. I know that we have been blessed with this child. I

just wish I knew what to expect from this!

I took Brockton to be wieghed 2 days ago. He still hasn't reached

16 lbs. Yesterday I logged his wieght into his baby book. He's been

15 pounds and however many ounces for over 2 months now. Until this

morning it hadn't really hit me. My son has Silver Syndrome.

I don't think it would be affecting me so much if we had a Dr. that

took it seriously. They diagnosed him and sent us on our way

without even explaining what it is! It was almost like they were

telling us that he has a hangnail. DAMN IT! I want them to take it

seriously! This is my son! This is the child that, despite all

odds, MADE IT! He deserves to be paid attention to!

How do I become proactive on my sons behalf when there are no

professionals around here for me to DEMAND that my son not be swept

under the rug? We haven't got money. We don't even have a decent

vehicle to drive out to NYC to see Dr. Harbison even if we could get

an appt. to see her.

I want to SCREAM AT THE TOP OF MY LUNGS until I can't scream

anymore. Even though it's not the worst thing in the world.......I

am overwhelmed with sadness this morning. My son has Silver

Syndrome.

[Guest guest]

I felt tears trickle down my cheek after reading this. I remember

feeling this same way. I remember telling God " If you will give me a

child and he is a boy I will name him Isaac and teach him to love

You " . I prayed that for 6 years and God answered those prayers and I

was pregnant!! After Isaac was born and he wasn't the " perfect "

bouncing baby boy I felt so cheated. I was angry with God..how could

He do this to me? Was this some kind of joke? there were 4 other

children born within 2 years of Isaac in our family..all healthy and

all surprises to unwed people ages (18-24). I remember feeling so

dissapointed and then guilty for being ungrateful. It took a long

time for me to realize that none of the other people in my family

would be able to take care of Isaac like I can and God gave him to

me for a very specific reason. My mother tried to " cheer me up " with

the " it could be worse, he could have____ " and inserted various

conditions based on the day of the week. It never helped and just

made me feel worse.

The pain/anger that you are feeling is very real and there are still

times when my heart hurts for what is to come for my son in the

future (when he starts school, dating, etc). It will get better..our

kids are incredible! My son is not even 2 and he has taught me so

much about strength and being brave! I marvel at the wonder that is

Isaac and I feel blessed that God believed in me enough to give me

the pleasure of being his mom!!

Please take care..it does get better:)

Mimi

Mom to

Isaac (22 months, RSS, hypothyroid, MCAD)

Sofia (2 months)

>

> Okay. I woke up at 5:30 a.m. with one thought in my head.

>

> My son has Silver Syndrome. I haven't been able to say it

> and truly believe it until now. I have no idea why my mind

decided

> to accept it at 5:30 in the morning. I raced into my sleeping

son's

> room after getting a bottle from the fridge and held him in my

> arms. Looking at his beautiful face I reminded myself how lucky

we

> are that he's here at all. I know that there are far worse things

> than Silver. I know that Brockton can still live a full

and

> happy life. I know that we have been blessed with this child. I

> just wish I knew what to expect from this!

>

> I took Brockton to be wieghed 2 days ago. He still hasn't reached

> 16 lbs. Yesterday I logged his wieght into his baby book. He's

been

> 15 pounds and however many ounces for over 2 months now. Until

this

> morning it hadn't really hit me. My son has Silver

Syndrome.

>

> I don't think it would be affecting me so much if we had a Dr.

that

> took it seriously. They diagnosed him and sent us on our way

> without even explaining what it is! It was almost like they were

> telling us that he has a hangnail. DAMN IT! I want them to take

it

> seriously! This is my son! This is the child that, despite all

> odds, MADE IT! He deserves to be paid attention to!

>

> How do I become proactive on my sons behalf when there are no

> professionals around here for me to DEMAND that my son not be

swept

> under the rug? We haven't got money. We don't even have a decent

> vehicle to drive out to NYC to see Dr. Harbison even if we could

get

> an appt. to see her.

>

> I want to SCREAM AT THE TOP OF MY LUNGS until I can't scream

> anymore. Even though it's not the worst thing in the

world.......I

> am overwhelmed with sadness this morning. My son has

Silver

> Syndrome.

>

[Guest guest]

You have already gotten a lot of great comments and advice. I think

you can see that we have all been exactly where you are right now

and you can see that we are still here. We made it thru and are

still relying on one another to get us thru the next step.

However, I would like to add that it does get easier. My Coby was

only 2.4 lbs at birth. He is just 3 yrs old now and already things

have gotten much easier. The first year is very complicated, but it

will fly by. Our babies never stay small for long, so these

difficulties you feel now will pass just as quickly.

We still deal with RSS in our household, but it is not as much of

our " daily " life anymore. You get the routine down and it becomes

normal so you don't think of the RSS the way you do in the

beginning. I may only really think of Coby's RSS once or twice a

week now. Hopefully, the older he gets the less it will become an

issue.

Yell, scream, throw things (just not at anyone)…hehehe You have to

do what you feel. We all know it could be worse, but at this moment

it feels pretty damn bad for you and it is ok to feel that way!!!!!

Please, stay in touch with us, lean on us, and learn from us.

le, mom to:

Shye 11, Brock 9, Coby (rss) & Carlee 3 yr old twins

[Guest guest]

I was having a ROUGH morning!!! I don't know what had me so freaked out!

Thank you all so much for your kind words and understanding. You are all my

lifeline at the moment since I don't have any " professional's " to turn to.

Could somebody give me Dr. H's office number? I'd like to try to get Brockton

in to see her. We'll figure something out for finances.

Anybody need a kidney???? LOL I've got two and I've heard that you only

really NEED one!

le wrote:

You have already gotten a lot of great comments and advice. I think

you can see that we have all been exactly where you are right now

and you can see that we are still here. We made it thru and are

still relying on one another to get us thru the next step.

However, I would like to add that it does get easier. My Coby was

only 2.4 lbs at birth. He is just 3 yrs old now and already things

have gotten much easier. The first year is very complicated, but it

will fly by. Our babies never stay small for long, so these

difficulties you feel now will pass just as quickly.

We still deal with RSS in our household, but it is not as much of

our " daily " life anymore. You get the routine down and it becomes

normal so you don't think of the RSS the way you do in the

beginning. I may only really think of Coby's RSS once or twice a

week now. Hopefully, the older he gets the less it will become an

issue.

Yell, scream, throw things (just not at anyone)…hehehe You have to

do what you feel. We all know it could be worse, but at this moment

it feels pretty damn bad for you and it is ok to feel that way!!!!!

Please, stay in touch with us, lean on us, and learn from us.

le, mom to:

Shye 11, Brock 9, Coby (rss) & Carlee 3 yr old twins

[Guest guest]

Jeanie,

I hear you! You know, I have known that has RSS almost

exactly two years now. And, I still deal with these emotions. It is

like a roller coaster ride. One minute nothing seems to phase me

about RSS, then the next moment I turn around and I am fighting for

something I feel I shouldn't have to fight for. Funny thing, I wok

up yesterday morning around the same time you are talking about and

was thinking about and his RSS, too. I had a meting I was

going to that would discuss and RSS and how it would effect

him in school. Long story, but it is something we deal with on a

daily basis. I still cry and mourn for what goes through and

think about how unfair things are for him. But, then I feel selfish

for feeling that way. So, once again the roller coaster ride. I can

so easily understand your feelings, because you said it so well. DAMN

IT! He deserves for someone to listen and TRY to understand RSS.

No, he isn't JUST SMALL!! I get so tired of emphasising that. But,

you know, this list has helped me deal with so many situations and I

am so thankful I have found it. And, I am sure you will find comfort

here sometimes as well. Granted, it doesn't take the frustrating

moments and battles away, but at least you can talk and vent to

people who have really " been there, done that " !

Jeanie, I really do know what you are going through. Your son has

RSS.......BUT, your son has RSS!

Please keep us posted,

Jodi R.

's mommy

>

> Okay. I woke up at 5:30 a.m. with one thought in my head.

>

> My son has Silver Syndrome. I haven't been able to say it

> and truly believe it until now. I have no idea why my mind decided

> to accept it at 5:30 in the morning. I raced into my sleeping

son's

> room after getting a bottle from the fridge and held him in my

> arms. Looking at his beautiful face I reminded myself how lucky we

> are that he's here at all. I know that there are far worse things

> than Silver. I know that Brockton can still live a full

and

> happy life. I know that we have been blessed with this child. I

> just wish I knew what to expect from this!

>

> I took Brockton to be wieghed 2 days ago. He still hasn't reached

> 16 lbs. Yesterday I logged his wieght into his baby book. He's

been

> 15 pounds and however many ounces for over 2 months now. Until

this

> morning it hadn't really hit me. My son has Silver

Syndrome.

>

> I don't think it would be affecting me so much if we had a Dr. that

> took it seriously. They diagnosed him and sent us on our way

> without even explaining what it is! It was almost like they were

> telling us that he has a hangnail. DAMN IT! I want them to take

it

> seriously! This is my son! This is the child that, despite all

> odds, MADE IT! He deserves to be paid attention to!

>

> How do I become proactive on my sons behalf when there are no

> professionals around here for me to DEMAND that my son not be swept

> under the rug? We haven't got money. We don't even have a decent

> vehicle to drive out to NYC to see Dr. Harbison even if we could

get

> an appt. to see her.

>

> I want to SCREAM AT THE TOP OF MY LUNGS until I can't scream

> anymore. Even though it's not the worst thing in the world.......I

> am overwhelmed with sadness this morning. My son has

Silver

> Syndrome.

>

[Guest guest]

Oh Deb. You said this so well. You are so good with words. And, I

feel better reading your post, too. I have been feeling soooo bad

about the mourning process. And, even though I have known for two

years that has RSS, I still catch myself mourning the dream

of " the perfect child " . Meaning, I love so much, but I want

WITHOUT all the other stuff. But, that is what makes

who he is. So, I go through these little phases. It just made me

feel better knowing that I am not alone in feeling this way and that

it is a normal process. So, thank you Deb. You helped me feel

better, too. And Jeanie, I hope it helped you know that it is okay

to have these feelings.

Jodi R.

>

> Dear Jeanie

> Yes, you are right, it is not fair. And I know the minute we start

to feel sorry for ourselves and our child, we get this over riding

sense of guilt because there ARE kids out there with worse problems,

but you know what? That is of little consolation when it is your

beautiful baby.

> I truly understand how you feel. The best thing you did for your

son is to find this place. You will become knowledgeable and you will

become empowered to fight for him. Many of us don't have the

opportunity to see Dr. H. and yet we manage to fight the good fight

and in the end get what is best for our child. For some of us the

fight lasts a little longer than the others, but you would be

surprised what you are capable of. I am thinking of Leah right now.

We are both in Canada but she is having great difficulty getting GH

and I didn't have as great a problem. But between us we will make

sure, come hell or high water, Olivia will get the GH.

>

> You too will find the strength to carry on in fact you are doing it

already. You love your little boy with all your heart and

soul.....sounds obvious?? Not so, I read every day in the news

stories about poor children who are abused and mistreated in the most

horrible situations. Your son is so lucky to have you and you have

already made the best out of a terribly unfair situation.

>

> Jodi Z. said it well. No matter how old our children are, we have

our up and down days. She has been living with the cloud of RSS

longer than any of us, I am getting up there in years as well and

yet some days I still shake my head in disbelief that this could

happen to me or to my precious baby boy.

>

> You are in the stages of mourning, go with the flow. Yes your son

is alive and you can hold him and kiss him any time you want, but at

the same time that dream of a perfect baby did die. And that is what

you mourn.

>

> Never ever worry that you should not yell and scream at the top of

your lungs at how unfair life can be sometimes. We have all been up

on that mountain yelling many, many times and we truly understand

what it feels like.

>

> We are here for you whenever you want to scream and know you do it

in a safe and loving environment because we care!!

>

> Give your little guy a great big fat kiss and hug, take a deep

breath and remember to be good to YOU too!

>

> Debby

>

>

> Reality

>

>

> Okay. I woke up at 5:30 a.m. with one thought in my head.

>

> My son has Silver Syndrome. I haven't been able to say

it

> and truly believe it until now. I have no idea why my mind

decided

> to accept it at 5:30 in the morning. I raced into my sleeping

son's

> room after getting a bottle from the fridge and held him in my

> arms. Looking at his beautiful face I reminded myself how lucky

we

> are that he's here at all. I know that there are far worse

things

> than Silver. I know that Brockton can still live a full

and

> happy life. I know that we have been blessed with this child. I

> just wish I knew what to expect from this!

>

> I took Brockton to be wieghed 2 days ago. He still hasn't

reached

> 16 lbs. Yesterday I logged his wieght into his baby book. He's

been

> 15 pounds and however many ounces for over 2 months now. Until

this

> morning it hadn't really hit me. My son has Silver

Syndrome.

>

> I don't think it would be affecting me so much if we had a Dr.

that

> took it seriously. They diagnosed him and sent us on our way

> without even explaining what it is! It was almost like they were

> telling us that he has a hangnail. DAMN IT! I want them to take

it

> seriously! This is my son! This is the child that, despite all

> odds, MADE IT! He deserves to be paid attention to!

>

> How do I become proactive on my sons behalf when there are no

> professionals around here for me to DEMAND that my son not be

swept

> under the rug? We haven't got money. We don't even have a

decent

> vehicle to drive out to NYC to see Dr. Harbison even if we could

get

> an appt. to see her.

>

> I want to SCREAM AT THE TOP OF MY LUNGS until I can't scream

> anymore. Even though it's not the worst thing in the

world.......I

> am overwhelmed with sadness this morning. My son has

Silver

> Syndrome.

>

>

>

>

>

>

>

>

>

[Guest guest]

Your very welcome Jodi, everything I said was true, I am glad I could help!!

Deb

Reality

>

>

> Okay. I woke up at 5:30 a.m. with one thought in my head.

>

> My son has Silver Syndrome. I haven't been able to say

it

> and truly believe it until now. I have no idea why my mind

decided

> to accept it at 5:30 in the morning. I raced into my sleeping

son's

> room after getting a bottle from the fridge and held him in my

> arms. Looking at his beautiful face I reminded myself how lucky

we

> are that he's here at all. I know that there are far worse

things

> than Silver. I know that Brockton can still live a full

and

> happy life. I know that we have been blessed with this child. I

> just wish I knew what to expect from this!

>

> I took Brockton to be wieghed 2 days ago. He still hasn't

reached

> 16 lbs. Yesterday I logged his wieght into his baby book. He's

been

> 15 pounds and however many ounces for over 2 months now. Until

this

> morning it hadn't really hit me. My son has Silver

Syndrome.

>

> I don't think it would be affecting me so much if we had a Dr.

that

> took it seriously. They diagnosed him and sent us on our way

> without even explaining what it is! It was almost like they were

> telling us that he has a hangnail. DAMN IT! I want them to take

it

> seriously! This is my son! This is the child that, despite all

> odds, MADE IT! He deserves to be paid attention to!

>

> How do I become proactive on my sons behalf when there are no

> professionals around here for me to DEMAND that my son not be

swept

> under the rug? We haven't got money. We don't even have a

decent

> vehicle to drive out to NYC to see Dr. Harbison even if we could

get

> an appt. to see her.

>

> I want to SCREAM AT THE TOP OF MY LUNGS until I can't scream

> anymore. Even though it's not the worst thing in the

world.......I

> am overwhelmed with sadness this morning. My son has

Silver

> Syndrome.

>

>

>

>

>

>

>

>

>