Far too much time has passed for me to try and catch up, so I guess it'll be sporadic postings every now and then. And that's probably /hopefully a good thing, because in hindsight, this Blog is often my therapy /outlet at our darkest patches. And we don't like those thank u.
Well Hope hasn't exactly been a picture of health recently: the flu jab in december really took it out of her, and since then she's had a chest and throat infection. Though she's on the mend, her illnesses seems to be a vicious circle of being ill, not eating, therefore not taking her epilepsy meds properly, getting dehydrated, and therefore having more seizures and being more lethargic... Not eating etc.
Anyway, this is supposed to be a happy post. Her wheels are here!! A momentous occasion! I was worried that they'd arrive, and that even after all the effort that went into getting them, that perhaps I wouldn't like them as much as I thought I was going to. Or that I'd have some issues/ personal Battles to wrestle with over what it actually is/ represents. As in, it's not a pushchair. It's a 'postural seating system' or wheelchair. It represents That my honk can't walk. That she's different. However, it is so splendid, I am pleased to say, I have no such issues. It's nicer than I remembered, and seeing Hope so comfortable in it, just makes it even better :0) Thank you doesn't seem to cover it really, but thank you so much to everyone that made this possible!
What's more, due to the late (but rightly so) contribution to the wheels by wheelchair services (they finally agreed to take back the useless wheelchair they supplied, and give us it's value towards the stingray), Hope now has a nice amount of money left in her bank account. I decided to get some more extras for the stingray; an extra harness, a grab rail and a play tray (expensive extras totalling just shy of £200). With the remainder of her money, I intend to buy her some 'switches' and switch toys, and a special swing for the garden. Hope LOVES swinging, but her head control isn't strong enough to cope in ordinary swings.
More nice news: I've mentioned the rainbow trust before. We have S from there help us when we need it (though I'm pleased to say we hardly ever do these days- though I know she's there should we need her). Anyway, last year, I shared Hope's (and our whole family) story, and agreed to have pictures taken for the rainbow trust to use in their Xmas appeal. Seeing it all in print, I have to admit, I was a bit gutted, just cause my family life was made out to be a real sob story , and I really don't like people to feel sorry for us, when actually despite everything these last few years have thrown at us, I do feel blessed ( most of the time anyway). Today I received a thank you note in the post from the rainbow trust, thanking us for allowing them to use our story, and saying that our story had already bought in more than £17,000, and they are expecting more! It's so nice to think we've been able to give something back to a charity that's helped us so much in our times of need.
Anyway, a mahoosive thank you from me and Hope to everyone who sponsored us and helped to Pay for the very best wheels that money could buy!
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 ).
I am happily married to Chris. I am Mummy to 4 beautiful children, but my beautiful 3rd baby is in heaven.
I am in my 5th year of a BA degree in Childhood and youth Studies. I enjoy my children, reading, studying, blogging, facebook, my friends, and if i get a spare moment, my newest hobby is knitting pretty little things for my smallest princess.