A story of, for and about Hope. Our princess Honkey Plonk- Hope Olivia. One very special lil lady, who brings so much joy!
Friday, 20 November 2009
An extra pair of hands
For one reason or another, we aren't exactly sending away the queues of helpful relatives offering us help. With our lives being such as they are (a baby that needs 24/7 supervision, who only ever 'cat naps', endless streams of medical appointments, plus 2 other children who also have many of their own needs, chris and I were feeling rather stretched to say the least. So, we've got an extra person :0) Just what we needed. We had the meeting with 'B' from the rainbow trust... He assessed our needs, and offered us their services. He bought 's' with him, who throughout played with hope. When 'b' said we'd be allocated our own family support worker, I hoped it would b s. It is :0) She started straight away. She stayed after 'b' left. It's only been 2 weeks since our first meet, but I can say she really is a welcome addition to our family. She's already won the kids over. And max is not easily won over. At all.
S will watch Hope for me, so that I can do housework. She'll come/take us to appointments, or pick the kids up from school when H and I are at an Appointment (it's not ideal pulling them out of school, but that's what I've had to do so far). The service is there as and when we need it. 24/7! Her car is loaded with baking goodies and art and craft things, so the kids enjoy her looking after them. What's more; she's a paediatric nurse who has previously worked in a childrens' hospice. Oh, and ...she really is lovely!
I guess the only negative, is the reasons we qualify :0(
We've had 5 appointments this week. 3 last week. 3 again next week lol. Will update on all of those when I have the energy!!!
Children in need tonight! Will be watching it from a different perspective tonight. Jordan knitted a pudsey bear. I sponsered her to. I made a donation yesterday, but Knowing that my donation is just a drop in the ocean, and that Hope will benefit from the charities children in need fund.
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.