Sunday, March 23, 2008

Quick update

There has been nothing notable to report since my last update, but I thought it was time to stop in and say that no news from me is invariably good news. Hannah is her usual sassy self and there have been no appointments or tests to comment on. So all is good. I can use my favourite words 'normal' and 'stable'.

Ooh, how could I forget?!? Hannah is now officially a cover girl! She appears on the front cover of the Winter 07/08 issue of the CLDF's Delivery Magazine.

Here is a link to the pdf version of the magazine. As usual she was filthy (covered in paint from the creche at the conference and chocolate from a cake she had just eaten) but it's a picture that truly shows her mischievous personality and that spark of vitality she has.

Tuesday, December 04, 2007

Reminder - every day is a gift

It's a while since I updated, but there hasn't really been anything new to report. That's good, I've had a few weeks where it's been easy to pretend that liver disease isn't part of our family life :) Hannah has continued to thrive at nursery - she seems to be friends with everyone and at the parents' meeting her teachers said she listens really well! Why doesn't she listen to me?!? She wants to be able to read and write like Caitlin, so she makes up stories to go with the pictures in books and can do a great 'H' to mark things with her name. It will be time to get the hankies out next week when she does her nativity, and then again for Caitlin's the following week.

Hannah is at clinic at the local hospital on Friday (the one where the doctor asks me how she is doing....) and we had her bloods drawn today. I have also been writing an article about BA; not a personal perspective, but a factual one. As I have been writing, I have been thinking that this disease I am writing about sounds really depressing. And it does. I started to write something about long term outlook and survival and thought, I don't want to write about the fact that there are survival statistics, that some children die. I want to write about the hope that there is, not the worst imaginable. But it would be a lie, and an injustice to the children who have died and their families, especially those who are in my heart and I call friends. I want to write about the hope to protect myself from the reality of the darkest place a parent can go. Up until then, I was writing in a fairly dispassionate way; it was only when I got to that survival part that I thought about those precious children and then CRAP! - my daughter has this, and I want to make it sound like it's all going to be ok.

So I left what I was writing, and came here to write about feelings not facts. As I logged in, I saw how many weeks it was since I updated, and then started off recording that the reason I haven't been here is 'normal life' and a happy, thriving three year old. So what started off as a tight little knot of fear has dissolved into an appreciation of everyday life with Hannah and a reminder that it is something to be celebrated here more regularly.

Friday, October 12, 2007

Three years today since Kasai

...and there is so much to celebrate and be thankful for. Three years of answered prayers.

A day to appreciate being at home just getting on with life, to enjoy the fact that the children have no idea of the significance of the day.

A day to look at Hannah, to hold her close, and give thanks for my miracle.

Wednesday, September 26, 2007

First Day at Nursery

Hannah started at nursery today! She was very excited beforehand as Caitlin has been telling her all about what to expect. She was thrilled to wear a uniform and be just like her big sister. Today's session was only an hour with half the children there as an induction, and the parents stayed too. They build it up for the next two days then the full sessions (2.5 hours) start on Monday.

Hannah had a great time and didn't want to leave at the end! She managed to cram an awful lot of busyness into an hour, and already has plans for what she is going to do tomorrow!

I can't believe how grown up she looks in her uniform...and I feel sad and excited at the same time that I am going to have every weekday morning to baby is growing up too fast!

Sunday, August 26, 2007

Hannah is 3!!!!!


When you have a child with a chronic illness, birthdays are a strange entity. A reminder of the miracle that is in front of you, a lesson that nothing in life is to be taken for granted. A time for great joy, but also a time when the fragility of life is markedly obvious.

One year ago today, I posted with the wonderful news that Hannah had made it to two years old, a milestone that she would never have reached without life saving surgery. Not only that, but she reached that milestone by hurtling full on towards it, not by stumbling along. And now, we have had another whole year of amazing and wonderful health. The future will always be uncertain, but there will never be any doubt about the blessings that we have had. Thank you God for Hannah, for everything she has taught me, for the many tears I have cried and for the many times when she has brought me sweet and unbridled joy. Thank you for my miracle, and help me not to take it for granted.