It is that time of year again – already – which makes it time for some news from us!!
Murray and I are still at the same jobs, we still go to the same church, we still live in the same suburb… you get the picture. One change is that I have recently increased from working 1 day a week to 3 days a week - this has been a challenge to say the least – especially as it means that on the days that I work Murray has to get the girls up and dressed and out the door to school and preschool. On time. We are managing reasonably well although there may have been a day where Emma went to school with her shirt buttoned incorrectly AND both legs down one half of her culottes. I was in no position to criticise though as that may have occurred in the same week that I wore my shirt inside out for an entire day at work without noticing. I couldn’t say for sure…
Emma started big school this year and has really enjoyed kindergarten. She got a great end of year report, saying that she always tries her best, has made progress in all key learning areas, participated enthusiastically in dance and is always keen to talk about her craft creations. What more do you need from a kindy report?
Emma lost 6 teeth this year and gained 4 huge ones in their place, she had many parties to attend as well as her first trip to the ED – due to a split chin from a fall at school. Thankfully she managed to do that on the same day Audrey mysteriously broke out in hives so at least we got a two-for-one deal.
Audrey had a great year at preschool this year and is looking forward to more of the same next year. She loves dancing, Disney princesses, fairies, pussy cats and mermaids – which makes her the complete opposite of her big sister. Audrey has been very well this year and continues to do well developmentally. She will have another follow up at the hospital next year before big school, but we expect her to do well at that. Audrey is nearly as big as Emma and they are great mates – in spite of the high pitched squealing that can be heard from time to time.
Ashlea has had a huge year this year. HUGE I tell you!
Where shall I start?
This year she has learnt to sit on her bottom for short periods of time, she has learnt to pull up to stand against the furniture, cruise a few steps along the furniture, climb onto the couch, and biggest of all she has learnt to walk short distances in a kaye walker (hand held walker). Originally when Ashlea was diagnosed with cerebral palsy these things were not even thought a possibility for her, so it has been amazing to see her achieve all these milestones.
Ashlea also took possession of her very first wheelchair early in the year. This has given her great independence, especially at preschool. She has attended preschool with Audrey this year and has blossomed through this experience. She has had a fantastic SN teacher who has helped her participate in all preschool activities including bus excursions and climbing firemen’s ladders.
Ashlea’s kidneys continue to be relatively stable – her creatinine is around 246 and we are still hopeful of putting that transplant off for as long as possible.
Ashlea’s speech is developing nicely at the moment too, and I am afraid to report that she is showing the same bossy tendencies as her sisters.
Of course we have many people to thank - as usual too many to list – but I would like to say a very big thank you to all of you who help us out in so many ways.
I was trying to think of something clever or inspiring to end this letter with, but I can’t come up with anything original, so I’m going to copy something I wrote about our life with Ashlea for a book that is being published next year. It is a book for parents of children with kidney disease, and Ashlea and many other gorgeous children like her are featured in it. Here is what I wrote:
People often say to us “I don't know how you do it” or “I could never cope with that”, but the truth is if they were in our situation they could do it and they would cope with it. We love Ashlea. In our situation the alternative to looking after a child with these disabilities, would have been to bury a child. I know which I choose. Having a child with serious disabilities makes you realise what is important in life. It doesn't matter how smart you are, or how rich or successful you are. What matters is that you love, and are loved. Ashlea might not have the same quality of life as her twin, but she loves. And she is loved. What else is there? Before having Ashlea I could never have imagined coping in a situation like this, now I can't imagine my life without her.
So, if you’ve been reading this letter and thinking to yourself – I don’t know how they do it – there’s the answer. Although there is more to it than that – it is not just about Ashlea being loved by us – her family and friends, it is also about her being loved by God, and about the certain future we are looking forward to – for her and for ourselves – in which these ‘light and momentary troubles are achieving for us an eternal glory that far outweighs them all’. Bring that on!!
We hope you have a great Christmas and New Year and would love to catch up with you if you are around over the holidays!
Alison, Murray, Emma, Ashlea & Audrey