Re: Looking at things in an entire new light

[Guest guest]

Sue,

That was beautiful. A hospital visit 24 years ago was what helped me too. I

was so thankful after seeing what we COULD be going through. MDS was nothing.

Life for you from this moment on will be easier, not that there won't be rough

spots, but it will all make sense now.

(mds24 yrs)

Looking at things in an entire new light

This past week Isabella had been sick. It started out with a runny nose, a

cough and by the end of the week a stomach virus and she could keep nothing

down. Yesterday was to be her birthday party that I had bought all the

decoration and goodies for. Well we ended up spending the day at Children's

Hospital with Isabella hooked up to an IV. It all happened so fast she went from

playing as normal with a little virus to quickly becoming dehydrated and just

hanging like a rag doll. I called all of the guest on our way to the hospital

and canceled the party. Isabella was quickly seen at the hospital. Her sugar

levels were slightly low and she was dehydrating quickly. They gave her IV's and

tried to see if she could keep a bottle down. She kept most of it down and in a

few hours she was back to herself waving and smiling at everyone that came into

the room. She was asking the nurses for books or should I say boops. We were

there for about 5 hours and she was releases. We only

had a few mishaps last night and this morning she is fine.

While I was at the hospital I met so many people going to the vending machines

and in the waiting room. It really put things in perspective for me. I met

parents that had been there with their children for weeks because on baby was a

hemophilic (not sure of spelling), another grandmother who's grand daughter had

a brain tumor. A little boy was screaming and begging for them not to stick him

again with a needle. My husband and I both had tears in our eyes. It made me

feel terrible for wallowing in my self pity for Isabella having MDS and XXX. It

also made me feel grateful that is all she has. I am looking at things in a

whole new light. So what if she missed her first birthday party, she did not

know the difference and could not have cared less. Her birthday is not until the

21st and I will freeze the cake and have people over then, I thought. I am just

grateful I have my beautiful, healthy baby with me. I am grateful all she had

was a little stomach virus. Things could

be so much worse and I am grateful that they are not worse. So what if

Isabella has MDS and XXX I will just have to work harder with her. I have never

been afraid of hard work. Isabella was not the only person that got healed in

the hospital yesterday, I also got a good dose of medicine that I needed. As far

as am concerned from now on the extra chromosome 21 stands for the extra love

she gives me and the XXX is for all the extra kisses she gives. That trip to the

hospital gave me clarity, hope and the ability to be very thankful.

I just wanted to share this with all of new parents who's children were

recently diagnosised with MDS. I think this is something that all of the other

parents all ready knew.

Sue

Isabella's grateful mom (she's almost 1)

[Guest guest]

Wow Sue,

As a mom of a recently diagosed toddler of MDS, you really touched my heart with

your writing. Sometimes we have to be reminded to not have self-pity when life

could be much more difficult.

My husband's 35 yr old cousin was just diagnosed with a brain tumor this week.

She has 3 kids and we're just hoping and praying that she will make it through

this. She lives a distance in Coplay, PA and seeing a top notch neurosurgeon in

Leigh High Valley.

We also found out my 8 yr old cocker spaniel Oreo may have cancer. The vet found

a polyp in his ear canal and it requires extensive surgery. He's also had 2

seizures in the past few weeks. I am very sad. We only found out about all this

yesterday. He had two knee replacement surgeries this year as well. I've had him

since he was a pup, he's really my first child before Kylie and Brookie. It's so

hard to have faith and hope when things are hard but your email really put

things in perspective for me. I really need to appreciate the here and now. You

just never know what's going to be around the corner.

The part you wrote about the extra chromosome that your daughter has

representing the extra love she gives was so beautiful. I just sat here and had

a very good cry. IT IS SO TRUE!! We are so lucky aren't we. Ya know, when I

first found out about this I was so overwhelmed, but my friend has a friend who

has a sister with DS. The first thing she said to me was - YOU ARE SO LUCKY. She

was the only one who said that to me. It really stuck with me. It's so wonderful

to see life through my daughter's eyes. She is always smiling and people are

just magnetized to her wherever we go. We must be pretty special parents to be

blessed with our daughters right?

Thanks for making my day, I really needed that story!

Looking at things in an entire new light

>

>

> This past week Isabella had been sick. It started out with a

> runny nose, a cough and by the end of the week a stomach virus

> and she could keep nothing down. Yesterday was to be her

> birthday party that I had bought all the decoration and goodies

> for. Well we ended up spending the day at Children's Hospital

> with Isabella hooked up to an IV. It all happened so fast she

> went from playing as normal with a little virus to quickly

> becoming dehydrated and just hanging like a rag doll. I called

> all of the guest on our way to the hospital and canceled the

> party. Isabella was quickly seen at the hospital. Her sugar

> levels were slightly low and she was dehydrating quickly. They

> gave her IV's and tried to see if she could keep a bottle down.

> She kept most of it down and in a few hours she was back to

> herself waving and smiling at everyone that came into the room.

> She was asking the nurses for books or should I say boops. We

> were there for about 5 hours and she was releases. We only

> had a few mishaps last night and this morning she is fine.

>

> While I was at the hospital I met so many people going to the

> vending machines and in the waiting room. It really put things

> in perspective for me. I met parents that had been there with

> their children for weeks because on baby was a hemophilic (not

> sure of spelling), another grandmother who's grand daughter had

> a brain tumor. A little boy was screaming and begging for them

> not to stick him again with a needle. My husband and I both had

> tears in our eyes. It made me feel terrible for wallowing in my

> self pity for Isabella having MDS and XXX. It also made me feel

> grateful that is all she has. I am looking at things in a whole

> new light. So what if she missed her first birthday party, she

> did not know the difference and could not have cared less. Her

> birthday is not until the 21st and I will freeze the cake and

> have people over then, I thought. I am just grateful I have my

> beautiful, healthy baby with me. I am grateful all she had was a

> little stomach virus. Things could

> be so much worse and I am grateful that they are not worse. So

> what if Isabella has MDS and XXX I will just have to work harder

> with her. I have never been afraid of hard work. Isabella was

> not the only person that got healed in the hospital yesterday, I

> also got a good dose of medicine that I needed. As far as am

> concerned from now on the extra chromosome 21 stands for the

> extra love she gives me and the XXX is for all the extra kisses

> she gives. That trip to the hospital gave me clarity, hope and

> the ability to be very thankful.

> I just wanted to share this with all of new parents who's

> children were recently diagnosised with MDS. I think this is

> something that all of the other parents all ready knew.

>

> Sue

> Isabella's grateful mom (she's almost 1)

>

>

[Guest guest]

Sue

I am so glad that this has happened. You are very right, there are so many

more things that could happen that when you look at the whole picture MDS and

XXX is not so bad at all! (I love your description of the diagnosis!)

There will always be times where you want to give up and say " Why Me God? "

But, I promise you....you ask that with every single one of your kids for one

reason or another! LOL

I used to ask " Why Me? " and now I know why! If Tim did not have MDS, then

IMDSA probably would not exist! If Tim did not have MDS, families would still be

without information or support! So...I am glad (most of the time) that Tim has

MDS!

BTW....I am very glad to hear that Isabella is ok and this was nothing too

serious. I know how scary that can be when your baby has to go in the hospital!

Kristy

oreo82999@... wrote:

Wow Sue,

As a mom of a recently diagosed toddler of MDS, you really touched my heart with

your writing. Sometimes we have to be reminded to not have self-pity when life

could be much more difficult.

My husband's 35 yr old cousin was just diagnosed with a brain tumor this week.

She has 3 kids and we're just hoping and praying that she will make it through

this. She lives a distance in Coplay, PA and seeing a top notch neurosurgeon in

Leigh High Valley.

We also found out my 8 yr old cocker spaniel Oreo may have cancer. The vet found

a polyp in his ear canal and it requires extensive surgery. He's also had 2

seizures in the past few weeks. I am very sad. We only found out about all this

yesterday. He had two knee replacement surgeries this year as well. I've had him

since he was a pup, he's really my first child before Kylie and Brookie. It's so

hard to have faith and hope when things are hard but your email really put

things in perspective for me. I really need to appreciate the here and now. You

just never know what's going to be around the corner.

The part you wrote about the extra chromosome that your daughter has

representing the extra love she gives was so beautiful. I just sat here and had

a very good cry. IT IS SO TRUE!! We are so lucky aren't we. Ya know, when I

first found out about this I was so overwhelmed, but my friend has a friend who

has a sister with DS. The first thing she said to me was - YOU ARE SO LUCKY. She

was the only one who said that to me. It really stuck with me. It's so wonderful

to see life through my daughter's eyes. She is always smiling and people are

just magnetized to her wherever we go. We must be pretty special parents to be

blessed with our daughters right?

Thanks for making my day, I really needed that story!

Looking at things in an entire new light

>

>

> This past week Isabella had been sick. It started out with a

> runny nose, a cough and by the end of the week a stomach virus

> and she could keep nothing down. Yesterday was to be her

> birthday party that I had bought all the decoration and goodies

> for. Well we ended up spending the day at Children's Hospital

> with Isabella hooked up to an IV. It all happened so fast she

> went from playing as normal with a little virus to quickly

> becoming dehydrated and just hanging like a rag doll. I called

> all of the guest on our way to the hospital and canceled the

> party. Isabella was quickly seen at the hospital. Her sugar

> levels were slightly low and she was dehydrating quickly. They

> gave her IV's and tried to see if she could keep a bottle down.

> She kept most of it down and in a few hours she was back to

> herself waving and smiling at everyone that came into the room.

> She was asking the nurses for books or should I say boops. We

> were there for about 5 hours and she was releases. We only

> had a few mishaps last night and this morning she is fine.

>

> While I was at the hospital I met so many people going to the

> vending machines and in the waiting room. It really put things

> in perspective for me. I met parents that had been there with

> their children for weeks because on baby was a hemophilic (not

> sure of spelling), another grandmother who's grand daughter had

> a brain tumor. A little boy was screaming and begging for them

> not to stick him again with a needle. My husband and I both had

> tears in our eyes. It made me feel terrible for wallowing in my

> self pity for Isabella having MDS and XXX. It also made me feel

> grateful that is all she has. I am looking at things in a whole

> new light. So what if she missed her first birthday party, she

> did not know the difference and could not have cared less. Her

> birthday is not until the 21st and I will freeze the cake and

> have people over then, I thought. I am just grateful I have my

> beautiful, healthy baby with me. I am grateful all she had was a

> little stomach virus. Things could

> be so much worse and I am grateful that they are not worse. So

> what if Isabella has MDS and XXX I will just have to work harder

> with her. I have never been afraid of hard work. Isabella was

> not the only person that got healed in the hospital yesterday, I

> also got a good dose of medicine that I needed. As far as am

> concerned from now on the extra chromosome 21 stands for the

> extra love she gives me and the XXX is for all the extra kisses

> she gives. That trip to the hospital gave me clarity, hope and

> the ability to be very thankful.

> I just wanted to share this with all of new parents who's

> children were recently diagnosised with MDS. I think this is

> something that all of the other parents all ready knew.

>

> Sue

> Isabella's grateful mom (she's almost 1)

>

>

[Guest guest]

Sue,

I can echo your thoughts and feelings almost exactly. When Austin was in the

PICU after his heart surgery, there was another baby in the room right next to

him who had been born 2 months early who also had DS. Because of his heart

problems and the fact that he had DS, his parents left him there, signed over

their rights and never came back. I felt so angry and heart broken all at the

same time. Once Austin was cleared for the Pediatric ward, while we were

waiting for a bed to open up, I had that little " Angel " put in with Austin so I

could love on them both.

At the time, if I had the money and room I would have taken him home with me. I

often find myself wondering what ever happened to " Angel " and I pray that he

found his true parents.

I hear so much on my other DS groups how sick their little ones are and it makes

me feel awful that all I have to deal with on a daily basis with Austin is his

lack of words. Makes one take stock and be thankful and hit the floor on bended

knees thanking the Lord for what we have and praying for those that have so much

worry in their lives.

God Bless,

Becky

God Bless,

Rowe

www.myspace.com/beckyrowe5150

Looking at things in an entire new light

This past week Isabella had been sick. It started out with a runny nose, a cough

and by the end of the week a stomach virus and she could keep nothing down.

Yesterday was to be her birthday party that I had bought all the decoration and

goodies for. Well we ended up spending the day at Children's Hospital with

Isabella hooked up to an IV. It all happened so fast she went from playing as

normal with a little virus to quickly becoming dehydrated and just hanging like

a rag doll. I called all of the guest on our way to the hospital and canceled

the party. Isabella was quickly seen at the hospital. Her sugar levels were

slightly low and she was dehydrating quickly. They gave her IV's and tried to

see if she could keep a bottle down. She kept most of it down and in a few hours

she was back to herself waving and smiling at everyone that came into the room.

She was asking the nurses for books or should I say boops. We were there for

about 5 hours and she was

releases. We only

had a few mishaps last night and this morning she is fine.

While I was at the hospital I met so many people going to the vending machines

and in the waiting room. It really put things in perspective for me. I met

parents that had been there with their children for weeks because on baby was a

hemophilic (not sure of spelling), another grandmother who's grand daughter had

a brain tumor. A little boy was screaming and begging for them not to stick him

again with a needle. My husband and I both had tears in our eyes. It made me

feel terrible for wallowing in my self pity for Isabella having MDS and XXX. It

also made me feel grateful that is all she has. I am looking at things in a

whole new light. So what if she missed her first birthday party, she did not

know the difference and could not have cared less. Her birthday is not until the

21st and I will freeze the cake and have people over then, I thought. I am just

grateful I have my beautiful, healthy baby with me. I am grateful all she had

was a little stomach

virus. Things could

be so much worse and I am grateful that they are not worse. So what if Isabella

has MDS and XXX I will just have to work harder with her. I have never been

afraid of hard work. Isabella was not the only person that got healed in the

hospital yesterday, I also got a good dose of medicine that I needed. As far as

am concerned from now on the extra chromosome 21 stands for the extra love she

gives me and the XXX is for all the extra kisses she gives. That trip to the

hospital gave me clarity, hope and the ability to be very thankful.

I just wanted to share this with all of new parents who's children were recently

diagnosised with MDS. I think this is something that all of the other parents

all ready knew.

Sue

Isabella's grateful mom (she's almost 1)

[Guest guest]

Hi Sue

Yes I went through a similar situation when I filled out the Careers Allowance

forms and took note of all the " other " conditions that Hunter could have been

born with. It really made me thank my lucky stars he did have MDS.

Hunter will be able to do everything, it just may take him a little longer to

learn.

Fiona

Mum to Hunter mds 9 weeks

Looking at things in an entire new light

This past week Isabella had been sick. It started out with a runny nose, a

cough and by the end of the week a stomach virus and she could keep nothing

down. Yesterday was to be her birthday party that I had bought all the

decoration and goodies for. Well we ended up spending the day at Children's

Hospital with Isabella hooked up to an IV. It all happened so fast she went from

playing as normal with a little virus to quickly becoming dehydrated and just

hanging like a rag doll. I called all of the guest on our way to the hospital

and canceled the party. Isabella was quickly seen at the hospital. Her sugar

levels were slightly low and she was dehydrating quickly. They gave her IV's and

tried to see if she could keep a bottle down. She kept most of it down and in a

few hours she was back to herself waving and smiling at everyone that came into

the room. She was asking the nurses for books or should I say boops. We were

there for about 5 hours and she was releases. We only

had a few mishaps last night and this morning she is fine.

While I was at the hospital I met so many people going to the vending machines

and in the waiting room. It really put things in perspective for me. I met

parents that had been there with their children for weeks because on baby was a

hemophilic (not sure of spelling), another grandmother who's grand daughter had

a brain tumor. A little boy was screaming and begging for them not to stick him

again with a needle. My husband and I both had tears in our eyes. It made me

feel terrible for wallowing in my self pity for Isabella having MDS and XXX. It

also made me feel grateful that is all she has. I am looking at things in a

whole new light. So what if she missed her first birthday party, she did not

know the difference and could not have cared less. Her birthday is not until the

21st and I will freeze the cake and have people over then, I thought. I am just

grateful I have my beautiful, healthy baby with me. I am grateful all she had

was a little stomach virus. Things could

be so much worse and I am grateful that they are not worse. So what if

Isabella has MDS and XXX I will just have to work harder with her. I have never

been afraid of hard work. Isabella was not the only person that got healed in

the hospital yesterday, I also got a good dose of medicine that I needed. As far

as am concerned from now on the extra chromosome 21 stands for the extra love

she gives me and the XXX is for all the extra kisses she gives. That trip to the

hospital gave me clarity, hope and the ability to be very thankful.

I just wanted to share this with all of new parents who's children were

recently diagnosised with MDS. I think this is something that all of the other

parents all ready knew.

Sue

Isabella's grateful mom (she's almost 1)

[Guest guest]

I heard this recently (last night) and I think it sums up our kids beautifully

" We're still people, we just do things differently " . The whole phrase is this

" We're little people who just do things differently " I heard it on TLC last

night watching the Roloffs (Little People, Big World) which happens to be

Trey's favorite show and Amy says that in the introduction and I think it

applies to everyone because " normal " is what you make it.

And Donna, Can you please send the snow our way (VA) because it would be ALOT

warmer if we had snow.....we woke up to ICE yesterday morning, but that all

melted by 2 PM, then the wind started kicking up and the temp. this morning with

the wind chill factor was 18 Degrees! So if we had some of your snow (quick

hoggin' it all, share already! LOL) we'd be warmer LOL

Ya'll doin' okay despite the snow Donna?

Becky

God Bless,

Rowe

www.myspace.com/beckyrowe5150

Looking at things in an entire new light

This past week Isabella had been sick. It started out with a runny nose, a cough

and by the end of the week a stomach virus and she could keep nothing down.

Yesterday was to be her birthday party that I had bought all the decoration and

goodies for. Well we ended up spending the day at Children's Hospital with

Isabella hooked up to an IV. It all happened so fast she went from playing as

normal with a little virus to quickly becoming dehydrated and just hanging like

a rag doll. I called all of the guest on our way to the hospital and canceled

the party. Isabella was quickly seen at the hospital. Her sugar levels were

slightly low and she was dehydrating quickly. They gave her IV's and tried to

see if she could keep a bottle down. She kept most of it down and in a few hours

she was back to herself waving and smiling at everyone that came into the room.

She was asking the nurses for books or should I say boops. We were there for

about 5 hours and she was

releases. We only

had a few mishaps last night and this morning she is fine.

While I was at the hospital I met so many people going to the vending machines

and in the waiting room. It really put things in perspective for me. I met

parents that had been there with their children for weeks because on baby was a

hemophilic (not sure of spelling), another grandmother who's grand daughter had

a brain tumor. A little boy was screaming and begging for them not to stick him

again with a needle. My husband and I both had tears in our eyes. It made me

feel terrible for wallowing in my self pity for Isabella having MDS and XXX. It

also made me feel grateful that is all she has. I am looking at things in a

whole new light. So what if she missed her first birthday party, she did not

know the difference and could not have cared less. Her birthday is not until the

21st and I will freeze the cake and have people over then, I thought. I am just

grateful I have my beautiful, healthy baby with me. I am grateful all she had

was a little stomach

virus. Things could

be so much worse and I am grateful that they are not worse. So what if Isabella

has MDS and XXX I will just have to work harder with her. I have never been

afraid of hard work. Isabella was not the only person that got healed in the

hospital yesterday, I also got a good dose of medicine that I needed. As far as

am concerned from now on the extra chromosome 21 stands for the extra love she

gives me and the XXX is for all the extra kisses she gives. That trip to the

hospital gave me clarity, hope and the ability to be very thankful.

I just wanted to share this with all of new parents who's children were recently

diagnosised with MDS. I think this is something that all of the other parents

all ready knew.

Sue

Isabella's grateful mom (she's almost 1)