I just lost my beautiful baby girl. She was only 19 days old. When she died, I lost my hopes, dreams, future as well as part of myself. Ater she died, I learned it was because of a rare genetic disorder called Incontinentia Pigmenti, which she inherited from me. I never knew I had it as I have no symptoms. With IP the chances of having a healthy child are only 50%. This is my life without my baby. My struggle to face every day as I long for my daughter and hope for a healthy child.
Thursday, August 2, 2012
My Cocoon of Hope...
We are waiting on the results of the
CVS. And it’s hell. We are trying to keep busy, both of us back at work. After
a weekend of laying in bed crying our eyes out…. It helps keep us sane, keeps
my mind preoccupied and me off the internet googling possible outcomes of
babies with Cystic Hygromas at 13 weeks. Working makes me think about other
things besides our future and what it could mean for our baby, the fact there
may not even be a future. Our next appointment will be on Monday and we may or
may not have full results by then. But we should know more come Monday. Also an
ultrasound will tell us more. My deepest hope is that the ultrasound will
appear normal somehow, the fluid filled cyst and fluid around the baby will be
gone. That our results will be normal…..this is my secret dream. I am focusing
on that. I also know, that the ultrasound could show the baby’s heart ahs
stopped. This thought enters my mind way too many times. To live with this
thought, knowing it’s a possibility I cannot even explain. Everything’s all up
in the air, so unknown. I am hating the waiting and want Monday to come. Yet at
the same time I don’t want it to ever come. I want to stay in my own little world.
In my cocoon of hope. Just me and my baby. Knowing these last couple of days,
this weekend might be our very last spent together. I want to be the best
possible mother I can be. That is all I can do. I don’t want to look back and
have any regrets. I want to enjoy every second having them here. I am trying as
much as I can to rest, (of all weekends we happen to be moving house, but with
the help of movers and my wonderful hubby it shouldn’t be too hard on me). I
want to relax, eat well, think positive thoughts while I ignore the negative
ones, I do this for my baby. I owe it to my baby. I want to bond with them as
much as possible. I spend all the time I can with my hands on my belly, where
the baby is; sending love, light and healing positive thoughts. What else can I
do? What other choice do I have? The fate of this baby is not up to me, out of
my hands. So I’m going to do all I can, giving it all I’ve got. Having been
here before, I know that’s so important to do. Knowing we did everything for
Amelie, that we were by her side every second in the hospital, gives me
comfort. I’m not afraid to bond with my baby, if it makes it hurt more in the
end, so what…it will hurt anyway….
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2 comments:
Good for you. I would do the same. Treasure evey minute but hopefully we will hear there are many minutes ahead!! Sending love!!
Dear Zita,
Just read your latest update and am absolutely devastated. I am hoping and praying for the miracle of a healthy baby and also hope your wonderful families are close by at these difficult times.
Hugs,
Rianon
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