[tri-wings] Re: introduction

Hi,

Yes we are lucky to live in Hawaii--although we just moved from a  
rental on the beach (where we lived ten years) to a house with a view  
of power lines, palm trees, and behind that, just a little bit of  
mountain, but no ocean--so we are kind of in withdrawals.  But it is  
ours which is a nice feeling.  I know, most people think five children  
is a whole lot!

My six year old tells me almost daily that he misses Gabriel--which I  
really appreciate although I also feel bad that he feels such a great  
loss.  I think he was really looking forward to being a big brother.   
My other children don't say a whole lot.  How have your children  
reacted?  My husband was planning on taking as much time off work as  
necessary (months if need be) and he put a lot of energy into learning  
how to use the cleft palette bottle, etc., so the loss hit him hard as  
well.  I have done most of the care-taking of our babies, so it was  
going to be a fun change for him to take a greater role in baby-care.   
I saw March of the Penguins before Gabriel was born and the role  
reversal seen in the penguins felt almost like what our life might have  
been like.  To pay our mortgage I probably would have needed to go back  
to work sooner.

Aloha!

Colleen

On Saturday, January 21, 2006, at 03:47  AM, Barbara Farlow wrote:

>
> HI Colleen,
>
> Thanks so much for your very kind words. I must say, I had a little  
> laugh
> when you told me you have "just" 5 other children because I'll bet you  
> don't
> get to say that very often!
>
> I have thought for a long time, and continue to think about the health
> management of our precious gifts. I think it is so important that we  
> know we
> did our best with the information at hand. It is for sure everyone here
> lovedtheir baby so very, very much and did what was best for them. I  
> agree
> there is no point of regrets.
>
> In our case, the geneticist and bioethicist at the hosp. both assured  
> us
> prenatally that our Annie would receive full support and if surgery was
> required, it would be considered based on our daughters health alone,  
> not on
> the trisomy 13 diagnosis. This was a lie.
>
> In reality, when Annie presented with respiratory distress they went no
> further than disgnosing pneumonia. The refused to do any testing that  
> would
> tell them anything else.
>
> If we knew then, what we do now, we would have taken Annie home  
> immediately
> after birth. She would have known only love and tenderness. The prick  
> of a
> needle or an IV would never have come near her. It is likely she would  
> have
> died in less than 2 weeks of hypoglycemia. (low blood sugars) It  
> probably
> would have been very peaceful.
>
> We were in hosp for 6 weeks battling the hypoglycemia, only for the  
> hope of
> afew years of life. If we had known there was no possibility of  
> surgery, we
> would never have done that.
>
> It must sound very odd to say that we would have traded our 80 days in  
> for
> only a few. But, the bottom line is we wanted what was best for her,  
> not us.
> Of course, we wanted her every second we could, but not at her expense.
>
> It seems a big part of the choices we make is based on how we receive  
> the
> information. I think some geneticists tell parents that there is zero  
> hope,
> that it is cruel to try anything, and then there is the famous, "dying  
> with
> dignity" (What does that mean??) It is very difficult for loving  
> parents who
> have an innate trust of their physicians to make decisions that are  
> thought,
> by them, to be cruel.
>
> In our case, the geneticist told us nothing. Before the fateful  
> ultrasound,
> Ihad researched the possibility of tri13/18 based on high nuchal trans
> measurement. Then the livingwithtri site started and the beauty of the  
> lives
> of those children transformed me.
>
> Well, I hope to get to know you better in the future Colleen. I would  
> love
> todiscuss the effect of this expience on the older children.
>
> Thank you again for your response,
>
> Barb
>
> ps. Do you really live in Hawaii? You lucky dog!!
>
>
>
>
> ----------------------------------------------------------------------- 
> -----
> From:  Colleen <springc001@xxxxxxxxxxxxx>
> Reply-To:  tri-wings@xxxxxxxxxxxxx
> To:  tri-wings@xxxxxxxxxxxxx
> Subject:  [tri-wings] Re: introduction
> Date:  Fri, 20 Jan 2006 20:12:35 -1000
> Hi Barb,
>
> I am sorry to hear about Annie's passing and the difficult
> circumstances surrounding it and the problems with the medical support.
>    I'm so glad though that you had at least 80 days with her.  We had  
> 34
> wonderful hours (which doesn't seem like enough but then there are many
> who have had less) with our sweet Gabriel.  How wonderful that you have
> nine other children.  We have just five others (the oldest is 19 and
> the youngest is 6).  I come from a family of ten, and my husband from a
> family of eight.  My mother and oldest sister were pregnant together
> when she had me (I'm her ninth and youngest natural child--she adopted
> number ten).  I was the same age she was when pregnant with me when I
> was pregnant with Gabriel (44) so I had high hopes that everything
> would go well.  In retrospect though, I feel that in most ways things
> did go well--I feel so blessed by every minute of Gabriel's life and am
> so glad that he is in our family even though his birth and death
> involved so much sorrow and pain and we long so much for him.  I have a
> strong belief that we will know him once again in the next life and
> that our family relationships will continue to develop then.  I do
> worry about what we might have done differently--but know in part that
> it is a natural part of the grieving process.  I have also learned
> things since his death that made me wonder if we could have done more.
>
> Take care.
>
> Colleen
>
>
> Wife to Paul, mom to Austin (19), Noelle (17), Ethan (11), Isaiah (8),
> Truman (6), and Gabriel (9-15-05 - 9-16-05)
>
>                    Building ___ooOOoo__ Rainbows
>                         www.trisomyonline.org
>                    Families Helping Families On-line
>
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
>
>
Colleen

Wife to Paul, mom to Austin (19), Noelle (17), Ethan (11), Isaiah (8),  
Truman (6), and Gabriel (9-15-05 - 9-16-05)

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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