honkeyplonk: Dead inside

Friday 28 August 2009

Dead inside

Can't believe there can be something sooo wrong :0(
I Just can't imagine life without Hope
Or seeing her get really poorly

My heart feels dead! I'm just going through the motions of life. But it's not fun

I keep trying to think positive. ...That perhaps it won't be that bad...
But they r bad!
I can't see past the dark clouds
My heart is heavy :0(
I wanna cry, but can't for sake of kids

The more I read, I just can't pin down which one of the 4 she has. But I suppose it explains a lot; her failure to thrive, her need to feed almost constantly, the fact she still doesn't sleep through the night on a regular basis.

I just hope we get the results soon
Then I can learn more
And find out how long
:0(

4 comments:

Elli (EuansMummy)28 August 2009 at 13:08
(((Caroline)))

I know there are no words that can take your pain and fear away right now, but want to send you so very much love.
When we found out how bad things were with Euan I remember saying I didn't know what to do. The best advise I was given was to 'just love him'.

Just keep on loving and living for Hope, sometimes it's all we can do.
Love always,
Elli
xxx
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kelly dace (shaunas mummy)29 August 2009 at 04:05
no words for you. just some hugs (())
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Anonymous29 August 2009 at 08:30
words dont cut it babe.....the only thing i would say is make these moments count, and live in the present as much as you can.Dont forget to enjoy her by thinking too far ahead babe.I know thats so easy for me to say as im not in your shoes and i cant inagine how your shoes feel but i hope you know where im coming from.Lots and lots of love
Di, Melissa and Mark xx
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marion drummond29 August 2009 at 11:58
hi caroline
cannot even imagine how you are feeling just now but sending you and your family all my love, and praying for a miracle for baby Hope.xx
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To say that Hope was a much wanted baby would be an understatement. Longed for, dreamed of and needed would be closer to the truth. Her big brother Sam died on Christmas day 07, leaving her Mummy, Daddy, big sister- Jordan, and big brother Max sad beyond words. Four months after lil Sam's death, and we were blessed with another pregnancy. Surely everything would be ok this time around? Sam had died of a diapramatic hernia, so knowing the increased odds of having another baby with CDH, we waited before breaking the news to Jordan and Max. At 13 weeks gestation, we were given the all clear and told the baby was a boy. So why was I dreaming about a little girl called Hope?
We broke the news to an excited Jordan and Max. This is when the growing fetus was named 'Honk' (will explain this at some point). After 2 weeks of delight our bubble was burst. There was something wrong. Here began our rollercoaster. Baby Hope was diagnosed prenatally with cerebellum hypoplasia and ventriculomegaly. We were advised to...I can't even type it, but obviously we didn't. Fot the first 3 months Hope appeared to be 'normal' - against the odds, but as time went on, it is becoming clear that all may not be as well as it could be. Hope is now globally delayed, and has recently been diagnosed with epilepsy.
Did we ask for a special child? No, but we have been blessed with one. Would we turn back time? No. Hope has bought light where there was dark; smiles where there were tears. I'm sure we will learn more from her than we will ever teach her. Who knows what the future holds for Hope. But I swear, I will always do the best by her and she will know love!

Update: Hope has recently been diagnosed with a mitochondrial disorder (high lactic acidosis). Due to the fact that any findings will not provide cures or even treatments we have declined further investigations (skin and muscle biopsies seem too much ).