Thursday, June 30, 2011

Meet Ian

I love seeing other blogs, photos and videos of other little kids (and even adults, truth be told) with DD. Firstly, I might be biased, but I think that some of these kids are the most adorable I've ever seen!! Secondly, it helps me to understand a little about what the future may hold for Maddy (although as with any condition, no two people are exactly alike). And thirdly, without fail, these kids have the best spirits, and great stories too :)

One of the ladies in a DD support group that I'm part of shared this video that her son featured in. Ian is seven and has stayed at the Ronald McDonald house "hundreds" of times. He was a part of this fundraising video for them, and you just HAVE to see it :) 

(and yes, I know I have a LOT of updating to do around here!! Need to get onto that...)

Monday, June 20, 2011

New Friends - Part 3. Alison :)

One of my hopes for when we were back in Australia was that we would be able to meet someone else with Diastrophic Dysplasia. I thought that possibly that would happen at the SSPA function we went to, but there was no one with DD there. 

I have been very active in online communities, and one such group is a DD support group which I actually started. I had a bunch of mothers and one adult with DD who I had emailed a little, and I figured it was easier to talk with them all via Facebook instead. Little did I know that everyone knew everyone else and my little group of about 7-8 people ended up growing to over 100 members made up solely of adults with DD or parents of children with DD. 

Out of all the members in the DD support group, I believe there is only one member who lives in Australia. That member is Alison. Alison is roughly my age and has DD. She lives very far from where we do in Australia and so I wasn't expecting to be able to meet her. However she and her mother Louise had the chance to come up to my hometown for a weekend when I was there. It was the same weekend as Maddy's dedication service, so they were able to come along.

Out of all of the things we did while we were back in Australia, out of all the people we saw, meeting Alison and Louise was probably one of the highlights of the whole trip. Both of them are amazing people, and fellow-Christians as well. When we went to the SSPA weekend, we felt that with many of the people there, all that we had in common was the dwarfism. But with Alison and Louise, we had so much more in common than that. 

It was great to be able to talk with Louise about her experiences parenting her three children, two of whom have DD. There are many parts of her experience that I can relate to, others that I'm thankful that I cannot relate to, other parts that I know are yet to come. 

And talking to Alison was wonderful as well. I love how Alison has not used DD as an excuse. She went to university and is now a teacher (and I'm sure she's a fabulous one at that!). She's an amazing and beautiful person, both inside and out - and I'm so honoured that she and Louise would take the time and money to go so far out of their way to come and visit us and support us in the early stages of this journey!!

Plus she made Maddy the adorable headband in the picture above! Note to self - I need to learn to knit ;)

I know how much it has meant so much to me to be able to meet Alison, and I know that as Maddy grows, having someone like Alison in her life would be such a blessing in more ways than one. Here's hoping that we have a long and wonderful friendship.

Friday, June 17, 2011

New Friends - Part 2. SSPA

As I knew that Hong Kong has no organisation for people with dwarfism, I have been following the webpages of the SSPA, and in particular the NSW/ACT branch webpage. I was hoping that when we were back in Australia, there might be a function that we could attend. I was excited to find out that indeed there was! Right in the middle of our trip, there was a weekend planned in Canberra, just a couple of hours drive from my parents' place. 

I  think that it is important for our family to have at least something to do with other people with dwarfism for a few reasons. Firstly, it helps us to stay up to date with the latest medical issues that may be relevant for Maddy. Secondly, it can help us to be able to know what products/devices we can use to help Maddy gain independence. And thirdly, it can help to "normalise" dwarfism and help Maddy to feel as though she's not the only person with dwarfism in the world. Many of the people I talk to online have had very positive experiences with organisations such as LPA and I had high expectation of the weekend.

We had a pretty good time at the weekend and we met some amazing people there. Most of them, as I expected, had achondroplasia. I was hoping that there might be someone with DD, or someone who knew someone with DD, but I was surprised to hear that most of them didn't know anything about DD at all, and the leaders didn't think that there were any active members in the SSPA with DD. I wasn't really expecting that - I don't know if it's similar in the LPA or not. I do know that there are members of the LPA with DD and they have specific groups and workshops at their national conferences so it's probably not as bad there...

I would like to keep up some contact with the SSPA. I don't know if we would be going to every single meeting if we were permanently in Australia. Maybe once every year or two. I know that there are benefits for us to maintain ties with the SSPA but I don't plan to be "running for office" there any time soon ;) Going to the event made me realise that yes dwarfism is a part of our lives, but it is just one small aspect. I don't want dwarfism to be the all-encompassing theme of our lives. 

I grew up being very involved in church. We went to every youth camp and each year in our summer vacation, we travelled to a random city in Australia for the church national conference. It was a huge part of our lives and I loved it. I don't think that anyone could be THAT involved in two separate organisations. You'd either have to be just half-involved in both of them or completely involved in one at the expense of the other. You can only saddle one horse, so to speak. And I don't know if I want to completely saddle the "dwarfism horse".

All that to say, we had a great time at the SSPA weekend. It wasn't completely what we expected - but it was still good and beneficial. Hopefully we'll be able to see more of them on future visits back to Australia :)

Tuesday, June 14, 2011

New Friends - Part 1

Ever since I was pregnant with Maddy, I have been wanting to connect with other parents and people with similar conditions. One of the first things that I did when we found out that Maddy had a skeletal dysplasia was to look up other blogs and find contacts who I could talk to about our journey. I have been so blessed this past year to have made some amazing contacts through the internet.

I always hoped to be able to meet some dwarfism contacts in real life rather than just through the internet, but when I inquired about dwarfism support groups in Hong Kong, I found that there are none. The US has the LPA (Little People of America), Australia has the SSPA (Short Statured People of Australia), but no such group exists in Hong Kong.

Not long before we went to Australia, I was emailing the fabulous Buckeroomama who taught us a Babysigns course when Lana was a baby. I wanted to ask her about signing for Maddy since Maddy has restricted movement in her hands - and in the course of the conversation, she mentioned that she happened to have a friend with a daughter with dwarfism, and would I like her to put us in touch with each other? I was so excited - it was completely unexpected and I had been looking for contacts here in Hong Kong for ages!

The following week, one of my friends here in Hong Kong emailed me and mentioned that she was at a playroom and noticed a young girl with dwarfism so she started talking to the girl's mother about me and if I wanted, here were her contact details!! So after a year of not finding ANY dwarfism contacts here in Hong Kong, in the matter of a week, I had made TWO new contacts!!

The three of us all have girls and they all have different forms of dwarfism. The oldest girl is 11 and has hypochondroplasia, one of the more mild forms of dwarfism. The next oldest is 5 and has the most common form, achondroplasia. And then of course there is Maddy :)

I was able to meet up with one of the mums and her five year old before we went to Australia. Since returning from Australia, all three of us have met up for coffee. We plan to do it more regularly - but both of the other mothers are heading over to California for the big LPA national conference in a couple of weeks so we will have to wait until they get back (Wish we could go too - maybe another year!!) Yay for new friends!! :)

Wednesday, June 1, 2011

Meant to Be

When we were in Australia (yes, we're back in Hong Kong now and I will get around to updating this poor neglected blog soon!!), we had a dedication service for Maddy. One thing that we wanted to do was to have a slideshow of photos of Maddy and play it along with a meaningful song. Every since I heard the song "What it means to be loved" over a year ago, I wanted to use that song at her dedication. The song held so much meaning to me when I was pregnant and at the time, it was so appropriate.

However, as I started to put the video together with that song, it felt so wrong. While I still love the song, it is so "backwards looking" for us. It reminds me of the pain of the pregnancy, it reminds me of how we thought we might lose Maddy - and while I don't want to forget those things, it wasn't appropriate for her dedication. Instead, right before the dedication service, we heard a new song which so perfectly fit us for NOW. It is "forwards looking" and celebrates Maddy rather than looking back at the uncertainty of the past. So at the last minute, we changed songs - and I'm so glad we did!!

Anyway - here is the video, complete with some new photos from our time in Australia. The lyrics to the song are posted below as well. 

Meant To Be - Steven Curtis Chapman

Long before you drew your first breath
A dream was coming true
God wanted to give a gift to the world
So He wrapped it up in you
Every step that you've taken
Every move that you make
Is part of His plan

You were meant to be touching
The lives that you touch
And meant to be here
Making this world so much more
Than it would be without you in it
You were meant to be bringing
The gifts that you bring
And singing the songs
You've been given to sing
You are perfectly, wonderfully,
Beautifully meant to be
You were meant to be

Long before you took your first fall
You stumbled to the ground 
God started telling the story of you 
To the angels gathered around
Every failure and victory
Everything in between
It's all in his hand

For every breath that you're taking
And every move that you make
It’s a meaningful life you’ve been given
Live it well

(ps - does Blogger always make the videos such low quality or is it something I did? If I upload from youtube rather than uploading directly to blogger would that give me a better resolution video? This is my first time adding a video to my blog so I'm still trying to figure it all out!!)