honkeyplonk: Oh my honkey...

Saturday, 26 June 2010

Oh my honkey...

Omg- my honkey!

Can't quite believe I'm stood outside the oasis ready for the NCT sale, and Honkey isn't here. She's popped off with Daddy and Dolly to quickly pick Max up from football. This is the first time we have seperated. But it's cold. It made sense for her to be in the warm car. It happened so fast. She'll be back soon.

I've been preparing myself for this day for ages. Seems crazy I know, but in the beginning you don't leave tiny babies, then the seizures started, and through fear I wouldn't even leave her in a room, then I guess it became habit, then perhaps obsessive lol.

A few weeks ago, I took a step in the right direction, by leaving Hope with S (from rainbow trust) whilst I took Jordan and Max swimming. But, S was still at swimming, just watching, so I could see Honkey and check she was ok.

.........….……..............................................................

They came back a few minutes later, and I was relieved, and pledged not to do that again in a hurry. But actually, i think I need to. Chris won a meal out for us both at an Italian restaurant, so I think I can be tempted.

Update: we did go out for the Italian. S looked afer Hope and dolly and Moo. Sadly Nobody in the family knows Hope well enough for me to be able to trust them with her care. But I know Shes in good hands with S, plus dolly and moo like having S look after them.

1 comment:

Caroline26 June 2010 at 12:13
this was actually written back in april, but i just came across it on my iphone
xxx
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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 ).