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,

What a sad story. I am sure she's watching you and loves you so much.

This disease is so unfair. Can I ask a question without sounding

morbid? I didn't even know you could take deceased people home. What

it a special circumstance? You are very brave, I don't think I would

have coped with it all. I dread the thought, and yes I think we all

have that pushed way way back in our heads.

Give Liam a great big hug, I am sure he is very handsome and special as

all Liam's are (I'm biased there).

(Australia)

mummy to Liam 9 wocf & Eilish 6wcf

birthday rememberance

Clear DayHi all

Well today is my little angel Lilys birthday, she would be 3 today if

she were here. I had a huge wave of saddness come over me remembering

what I was doing at this time, well I was about to go into labour, she

was born in about 8 hours time. What a relief that was, but thats when

it all went wrong, she wasnt latching on, having trouble breathing and

within minutes she was taken away and the long road ahead started for us

with the diagnosis of CF, Lily underwent two operations for meconium

blockage and the second time she came back ventilated, ( where I am sure

she got PA from) This is where she went down hill, we were called back

and for 12 hours our family took turns holding our wee Lily Madison, it

seemed like a big nightmare, just so unreal, these things happen to

other people, not me!! We realised she was going to die and we both told

her she could go, we let her go and soon after that she died in my

hubbys arms with me crying over her.

We took her home for 3 days, I talked with her, held her, slept with

her, cryed with her, took her in the garden for a walk. All the things

I should have been able to do, I know that those 3 days helped me grieve

so much for my loss.

Its been 3 yrs now, we have come along way in our grief, not only for

Lily but for our genes, we now also have a son with CF who is very

healthy I might add, and such a blessing. We wont be having any more

children naturally, it is just to hard to cope, the fear is just to

great that death can take our children away from this disease, I try so

hard to beat that fear but it does raise its head now and then.

I love my son so much, but it hurts to love him too because of my

experiences, i am sure you guys understand.

mum to 2 babies Liam 17months wcf (my pride and joy) and Lily 8

days old now an angel watching over us

xxxx I love you little girl.

mummy

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in new zealand we can do that for 3 days, the Maori people do it all the

time

birthday rememberance

>

>

> Clear DayHi all

> Well today is my little angel Lilys birthday, she would be 3 today if

> she were here. I had a huge wave of saddness come over me remembering

> what I was doing at this time, well I was about to go into labour, she

> was born in about 8 hours time. What a relief that was, but thats when

> it all went wrong, she wasnt latching on, having trouble breathing and

> within minutes she was taken away and the long road ahead started for us

> with the diagnosis of CF, Lily underwent two operations for meconium

> blockage and the second time she came back ventilated, ( where I am sure

> she got PA from) This is where she went down hill, we were called back

> and for 12 hours our family took turns holding our wee Lily Madison, it

> seemed like a big nightmare, just so unreal, these things happen to

> other people, not me!! We realised she was going to die and we both told

> her she could go, we let her go and soon after that she died in my

> hubbys arms with me crying over her.

> We took her home for 3 days, I talked with her, held her, slept with

> her, cryed with her, took her in the garden for a walk. All the things

> I should have been able to do, I know that those 3 days helped me grieve

> so much for my loss.

> Its been 3 yrs now, we have come along way in our grief, not only for

> Lily but for our genes, we now also have a son with CF who is very

> healthy I might add, and such a blessing. We wont be having any more

> children naturally, it is just to hard to cope, the fear is just to

> great that death can take our children away from this disease, I try so

> hard to beat that fear but it does raise its head now and then.

> I love my son so much, but it hurts to love him too because of my

> experiences, i am sure you guys understand.

>

> mum to 2 babies Liam 17months wcf (my pride and joy) and Lily 8

> days old now an angel watching over us

> xxxx I love you little girl.

> mummy

>

>

>

>

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I don't think they let us do that here in the US, do they?

birthday rememberance

>

>

> Clear DayHi all

> Well today is my little angel Lilys birthday, she would be 3 today if

> she were here. I had a huge wave of saddness come over me remembering

> what I was doing at this time, well I was about to go into labour, she

> was born in about 8 hours time. What a relief that was, but thats when

> it all went wrong, she wasnt latching on, having trouble breathing and

> within minutes she was taken away and the long road ahead started for us

> with the diagnosis of CF, Lily underwent two operations for meconium

> blockage and the second time she came back ventilated, ( where I am sure

> she got PA from) This is where she went down hill, we were called back

> and for 12 hours our family took turns holding our wee Lily Madison, it

> seemed like a big nightmare, just so unreal, these things happen to

> other people, not me!! We realised she was going to die and we both told

> her she could go, we let her go and soon after that she died in my

> hubbys arms with me crying over her.

> We took her home for 3 days, I talked with her, held her, slept with

> her, cryed with her, took her in the garden for a walk. All the things

> I should have been able to do, I know that those 3 days helped me grieve

> so much for my loss.

> Its been 3 yrs now, we have come along way in our grief, not only for

> Lily but for our genes, we now also have a son with CF who is very

> healthy I might add, and such a blessing. We wont be having any more

> children naturally, it is just to hard to cope, the fear is just to

> great that death can take our children away from this disease, I try so

> hard to beat that fear but it does raise its head now and then.

> I love my son so much, but it hurts to love him too because of my

> experiences, i am sure you guys understand.

>

> mum to 2 babies Liam 17months wcf (my pride and joy) and Lily 8

> days old now an angel watching over us

> xxxx I love you little girl.

> mummy

>

>

>

>

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,

In the USA they do not allow the body to be taken home any more. Health

department or something stopped it many years ago.

I remember in the past when relatives passed away and the body was brought

home to lay in state. It does seem this was a good way to mourn and honor them

before the funeral. Same general idea and purpose as holding a wake.

Now it's only a few hours at the funeral home and they are gone. They don't

let the family stay all night at the funeral home any more like they used to,

either.

I can see where was able to say goodbye to Lily by having her at home

for a short time. I do not know if I could do that. It is a comforting

thought to think of little Lily playing with Rodney now. He can take her for a

ride in his go cart! Along with Tyler and Dale Earnhart and many others that

have been removed from our lives. They will all be missed for many, many years.

Everybody tries to keep their kids or themselves as healthy as possible for

as long as possible so we can enjoy their company for as long as possible.

did not get the chance to do that with Lily. I guess there must have

been a very special program going and a new little voice was needed.

Aunt B

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No they do not..

L & H,

GRAMBEV

Re: birthday remembrance

I don't think they let us do that here in the US, do they?

birthday rememberance

>

>

> Clear DayHi all

> Well today is my little angel Lilys birthday, she would be 3 today if

> she were here. I had a huge wave of saddness come over me remembering

> what I was doing at this time, well I was about to go into labour, she

> was born in about 8 hours time. What a relief that was, but thats when

> it all went wrong, she wasnt latching on, having trouble breathing and

> within minutes she was taken away and the long road ahead started for us

> with the diagnosis of CF, Lily underwent two operations for meconium

> blockage and the second time she came back ventilated, ( where I am sure

> she got PA from) This is where she went down hill, we were called back

> and for 12 hours our family took turns holding our wee Lily Madison, it

> seemed like a big nightmare, just so unreal, these things happen to

> other people, not me!! We realised she was going to die and we both told

> her she could go, we let her go and soon after that she died in my

> hubbys arms with me crying over her.

> We took her home for 3 days, I talked with her, held her, slept with

> her, cryed with her, took her in the garden for a walk. All the things

> I should have been able to do, I know that those 3 days helped me grieve

> so much for my loss.

> Its been 3 yrs now, we have come along way in our grief, not only for

> Lily but for our genes, we now also have a son with CF who is very

> healthy I might add, and such a blessing. We wont be having any more

> children naturally, it is just to hard to cope, the fear is just to

> great that death can take our children away from this disease, I try so

> hard to beat that fear but it does raise its head now and then.

> I love my son so much, but it hurts to love him too because of my

> experiences, i am sure you guys understand.

>

> mum to 2 babies Liam 17months wcf (my pride and joy) and Lily 8

> days old now an angel watching over us

> xxxx I love you little girl.

> mummy

>

>

>

>

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I'll bet not. We tend to be " up tight " here in the USA.

Gale

> I don't think they let us do that here in the US, do they?

>

> birthday rememberance

> >

> >

> > Clear DayHi all

> > Well today is my little angel Lilys birthday, she would be 3

today if

> > she were here. I had a huge wave of saddness come over me

remembering

> > what I was doing at this time, well I was about to go into

labour, she

> > was born in about 8 hours time. What a relief that was, but

thats when

> > it all went wrong, she wasnt latching on, having trouble

breathing and

> > within minutes she was taken away and the long road ahead

started for us

> > with the diagnosis of CF, Lily underwent two operations for

meconium

> > blockage and the second time she came back ventilated, ( where

I am sure

> > she got PA from) This is where she went down hill, we were

called back

> > and for 12 hours our family took turns holding our wee Lily

Madison, it

> > seemed like a big nightmare, just so unreal, these things

happen to

> > other people, not me!! We realised she was going to die and we

both told

> > her she could go, we let her go and soon after that she died in

my

> > hubbys arms with me crying over her.

> > We took her home for 3 days, I talked with her, held her, slept

with

> > her, cryed with her, took her in the garden for a walk. All

the things

> > I should have been able to do, I know that those 3 days helped

me grieve

> > so much for my loss.

> > Its been 3 yrs now, we have come along way in our grief, not

only for

> > Lily but for our genes, we now also have a son with CF who is

very

> > healthy I might add, and such a blessing. We wont be having

any more

> > children naturally, it is just to hard to cope, the fear is

just to

> > great that death can take our children away from this disease,

I try so

> > hard to beat that fear but it does raise its head now and then.

> > I love my son so much, but it hurts to love him too because of

my

> > experiences, i am sure you guys understand.

> >

> > mum to 2 babies Liam 17months wcf (my pride and joy)

and Lily 8

> > days old now an angel watching over us

> > xxxx I love you little girl.

> > mummy

> >

> >

> >

> >

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