Why is this still ok?

Today as I was reading Facebook, I came across a picture that bothered me. Maybe it was my hormones raging, maybe it was my oversensitivity, maybe I'm still coming to terms with having a daughter with dwarfism, I don't know. I do know that a year ago, I might have chuckled and not given it a second thought - but today, I thought of my sweet Maddy and instead it made me cry. 

The picture was innocent enough, a teenage boy dressed up as an elf - wearing the typical elf hat, kneeling on the ground so that his knees could be in the shoes, arms not in the sleeves of his jacket - which gave him a pretty accurate "proportion" for the dwarf elf he was trying to represent. So much so that I did a double take, before realising that it was just an average height kid having some fun. 

I know that most people in our society see nothing wrong with the above picture. It's just a bit of Christmas fun. But as the parent of a child with dwarfism, I wonder - how will this society affect my daughter as she grows up? Why is it that it is still ok to stereotype dwarfs and to make fun of them? 

I previously wrote about my thoughts about Hollywood's representation of dwarfism -  and people were quick to tell me that there are now a small number of short statured people who have been cast in non-stereotypical roles, however this still appears to be the exception, not the norm. Most dwarfs in movies these days are still playing the roles of leprechauns, oompa loompas, angry dwarfs who kick people in the shins or some kind of magician's apprentice. They rarely (but still occasionally) play "a normal person who happens to be short statured".

If someone dressed up and acted as though they were affected by a mental disability for Halloween, people would be horrified. If I took out my newborn and had him on fake oxygen just to "dress up", that would not be accepted. Society has made it very clear that it is NOT ok to mock disabilities and special needs.

Except for dwarfs? 

Disclaimer: I know that in posting this, there is a chance that someone who knows the photo I am talking about will read it and recognise what I'm talking about. I know that the picture was taken innocently and was not meant to mock anyone. I am not attacking the photo, I'm just musing about how our society portrays dwarfism - and how people including myself never think about it until they are personally affected by it. I am not personally offended by the picture and mean no offense in anything that I've written. My heart just aches for my daughter who lives in a society where people will most likely laugh at her differences. 

Maddy's New Chair

I mentioned in this post that we were going to rent a medical feeder chair for Maddy to use at home. Well I picked it up on Christmas eve and this is what happened when it got home:

Lovely new chair - I think I might claim it for myself!!

No, Maddy - this is MY chair. What are you doing sitting in it??

There, that's better!!

I love you, my sister xox

Lana is quite taken with the new chair and she sits in there even more than Maddy does! Maddy is happy though that she has somewhere to sit that is a bit more comfy for her - although I think that she wishes it could have dangling toys like her old bouncer! We've tried to be creative with that but it hasn't been very successful so far. Maddy is very interested in her toys these days and is batting at them like crazy, trying to hold them but still figuring out how to work her stiff little fingers. Every now and then she succeeds though :) And I know she's just going to get better and better. Now if we could just figure out how to incorporate that environment with her new chair, that'd be great!! Any suggestions?? (remembering that HK isn't big on hardware/DIY stores!)

Merry Christmas

The girls, ready to start unwrapping

Wow, Maddy - look what you got!

Merry Christmas everyone!!

This year, we had a very relaxed and laid back Christmas. We spent pretty much the whole day at home, ate leftover spaghetti and chicken rice for lunch, the girls didn't get that much this year. But of course, the highlight was having Maddy home with us. For dinner, we went out to eat - Christmas is also Bernard's birthday so it was more of a birthday dinner really. We did have a cake for Daddy and Jesus (they had to share), and Lana spent most of the day eating junk. We had planned to go back home to Australia after Christmas (maybe on the 26th or 27th) but with Maddy being unable to travel, we're just staying home. In spite of not being able to go back home, it has been a good Christmas and it reminded me of what matters the most - not the running around like crazy and giving (and/or receiving) millions of gifts. It's remembering the birth of Jesus and being with the people who mean the most to you :) I hope you all managed to spend Christmas with the ones you love as well! 

I'm so happy for the family of Kody Tobler who managed to spend Christmas with him at home for the first time in his almost three years!  Kody was discharged from the hospital on the 22nd, just in time for Christmas :)

Thinking of Mary

At this time of year, people often do a lot of thinking about the birth of Jesus, about Mary and Joseph, the manger and shepherds and wise men. And a lot of my fellow-bloggers have been doing their share of blogging about their thoughts at this time of the year as well. 

One of my favourite posts that I have read about Christmas is from the blog of Katy at Bird on the Street. Here, she writes "Mary didn’t plan to give birth to the Savior–as far as I can tell, she didn’t even volunteer. She was drafted. Just like me. I was minding my own business when I got selected by fate to be the parent of a special needs child. There’s no handbook for this and figuring out what to do is often a pile of guesswork."

When I first found out that we were facing medical issues in this pregnancy, one scripture that I could identify with strongly was Luke 2:35. A prophet was prophesying all these wonderful things about Jesus, and then he turns to Mary and says "And a sword will pierce your very soul".

I'm sure that when Mary was chosen to be the mother of Jesus, she probably didn't initially realise just how much her heart would be broken, how much pain she would endure seeing the child she birthed treated unfairly and ultimately being killed for crimes that he did not commit. And like Mary, when I found out a little over a year ago that I was expecting another child, I had no idea just how much my world would be turned upside down while I had to learn to face challenges that we never expected. I was still innocent to the depth of pain and heartache that motherhood could and and would bring me in the coming year.

Becoming a mother makes you so vulnerable. I think that any mother can identify at least in part with Mary in the mixture of joy and sorrow that we endure watching our kids grow up. But being a mother of a child with special needs really makes the highs so much higher and the lows so much lower.

Last Christmas when I was enjoying my beautiful, perfect one year old and I had recently found out that we were expecting another little one, when I thought of the Christmas story, I thought about the joy that a new baby brings - and even more so for the baby Jesus, because His birth held sooooo much promise. He was to be Saviour.

This year, I am so much more aware of the painful side of Jesus' birth, that sword that pierced Mary's soul, the sword of a mother's vulnerability. But still, I rejoice. I rejoice at the birth of our Saviour, and at the birth of my own two precious angels too :) I am truly grateful.

Our first outpatient appointment

Today, Maddy had her first outpatient appointment - it was with occupational therapy. From reading other blogs, it seems as though in the US and Australia, occupational therapy and physiotherapy are often offered as home visits (am I wrong about that? Would love to know) - but here in Hong Kong we have to head to the hospital for the appointment.

Today's appointment primarily focused on Maddy's oral motor skills. The therapist had met Maddy once in the NICU - she is based out of a different hospital - and she was amazed at the progress that Maddy has made in the past month! She has gone from struggling to take even 40mL in one hour long feed to being able to easily take 140mL in about 15-20 minutes. The occupational therapist was showing me how Maddy's sucking is improved so much that I can start the feed without even squeezing on the Haberman feeder and just relying on Maddy's sucking ability to get the milk. She can't finish the feed like that because her sucking is still not strong enough - but she can take the first 40mL or so with no assistance which is a great start :)

We will also be seeing the occupational therapist for some developmental training, since Maddy is developmentally delayed in some areas. It is much harder for her to use her hands for one - she will learn how, but a bit of help will make it easier for her. Today though we didn't focus on those areas, only on the feeding. 

I mentioned to the OT that I wanted to try and find a chair that is more suitable for Maddy to be in. I find that the bouncer doesn't seem to have the back support that Maddy needs - she seems pretty uncomfortable in it, arching her back all the time. We have a Bumbo chair and I've put Maddy in it a couple of times when she needs a change of position but I don't think it is ideal for her yet - her back is not quite strong enough yet. When she was in the hospital, they had a "feeder seat" that Maddy seemed to love and I've been wanting to find something similar - something with a bit more back support. The proper medical ones are very expensive though - particularly in Hong Kong, close to USD$1000 apparently - but the OT helped me to fill out a form so that we can borrow one from the hospital for a few months. We should be getting that in the next week or so! 

When we were just about finished our appointment, one of the OTs from the hospital where Maddy was in NICU showed up and it was great seeing a familiar face. It made me kind of miss the hospital - not because I miss NICU, but Maddy had some fantastic nurses and doctors up there and after four months, we developed a bit of a relationship and I miss that. I think Maddy does too, she really loved some of those nurses, and they loved her too :)

As I was leaving the hospital, I ran into someone I knew when I was pregnant with Lana. Her daughter is the same age as Lana (just over two) and has developmental delays, so they have been going to the hospital for about a year for therapy. Her daughter has no diagnosis and the doctors don't know why she has these developmental delays - they are just taking it one step at a time. It made me realise just how lucky we are to have a diagnosis for Maddy. I know generally what to expect, when she might start rolling or sitting or walking, what kinds of things she will, or might not be able to do as she gets older. I can have some kind of an idea in advance what her future might be like. I can also look at other kids and even adults with the same diagnosis as Maddy and know that she has such a bright future. I'm grateful that my questions aren't just answered with further questions. I know that a diagnosis isn't everything, and each case is different, each individual is different... but I'm glad that we do know that, at least.

All in all, it was a pretty productive day. And it wasn't too bad, it didn't take too long and Maddy (and I) handled it great. We have no more appointments until after the Christmas/New Year period but we'll start the year with four appointments by the 10th! THAT will be fun, I'm sure :)

Routine

It's hard to believe that it's been two weeks already since Maddy came home! That time has flown by so quickly! When she first came home, it took a little while to adjust but now we're back into the swing of things :) When Maddy first came home, her oral feedings were not doing so well but now she's feeding like a champion! She drinks her milk so quickly and hungrily and often will cry when she is done. She's drinking more than the doctors recommended that I should feed her - but I think it's a good amount for her. I'm so glad that it's not a struggle any more!

It took me at least a week to figure out Maddy's routine but I think I've got it down pat now. She actually has a very reliable and predictable routine (once I figured it out anyway!). She'll eat, and then play for about an hour or so, then sleep for about an hour or so, and then wake up and want a bit more to eat again. It's a three hour cycle that starts at about 7-8am and goes until her last feed at 10-11pm, then she will sleep like an angel until 7-8am. 

Now that we are in our routine and Maddy is feeding well, things are going VERY smoothly! I always expected that the hard work would start when Maddy came home from hospital, but the opposite is true. It's been so easy! I actually am in awe of how easy things are at the moment (although the first week was VERY hard work!)

It's true that we haven't yet started our doctors appointments - we have six different specialties that we will be seeing in the next two months (occupational therapy, physiotherapy, ENT, cleft palate surgery team, neonatologist, and orthopedic doctor). I know that the appointments will complicate things a bit, but it can't be harder than going to the hospital for a few hours every single day. We have our first appointment (occupational therapy) tomorrow.

I've been loving having Maddy at home and have been showering her with hugs and kisses, blowing raspberries on her delicious baby cheeks and making her giggle non-stop. I think she might currently be one of the most-kissed babies in the world!!

Here's a few pictures of our lives the past week or so :) (I know I probably should break it up so that I have at least one picture with every post, but I can't help sharing them all!!)

Resting on Mummy and Daddy (and 50% of the time Lana)'s bed

Grimacing about "tummy time". Her center of gravity is much higher than an "average height baby" and her arms are so short that it's hard for Maddy to keep her head up. Often her little legs will pop up into the air instead and her face will be smooshed against the floor ;)

There, that way is MUCH better!!

Maddy loves this bunny blanket. She's exploring a lot of things with her hands lately and likes to hold/stroke things with interesting textures like her blankets and towels. This one is a favourite!

Maddy's first introduction to Playstation. She seemed fascinated ;)

There were three in the bed and the little one said...

Travelling

As expats living away from "home" in a foreign country (albeit the one where my husband was born), we generally do a lot of travel. In the first year that we were living in Hong Kong, I went back to Australia twice. In Lana's first fourteen months, she went to Australia three times, and Singapore, Malaysia and Thailand all once. That's more travel than a lot of people do in a lifetime!

The last time that we were overseas was last Christmas. We went to Malaysia and Singapore to visit Bernard's family over there. We had just found out that we were pregnant with Maddy at the time but we had no idea what the year would have in store for us!

We had been planning to go back to the US for a long time and were nearly at the stage of booking tickets for Easter this year when we found out that we had complications in the pregnancy. We decided to cancel the holiday and possibly head back to Australia later in the pregnancy - but the doctors recommended that I shouldn't travel at the time. 

Instead we were planning on heading back in October after Maddy was born, for Lana's second birthday. NICU changed that plan for us, but we didn't mind postponing until Christmas. We knew that Maddy should be out by then - and in some ways that was a better plan since my brother would also be in Australia from Denmark - plus it's SUMMER (and I love the Australian Summer!).

Last week I asked the doctor, just to be sure, whether Maddy was fit to go in a plane - and the short answer was "no". With her airway issues, the doctors cannot guarantee that she would be strong enough for the flight - although the cabin is pressurised, the pressure is still lower than atmospheric pressure. And the oxygen content is lower as well - closer to 17% than the usual 21%. Most people can fly and these conditions don't have any impact on them, but people who have respiratory problems can really suffer in those conditions. And the last thing that you want at 30,000 feet is a medical emergency. 

So we're currently "stuck" in Hong Kong. Bernard has nine weeks of annual leave owing since we were saving them up for the US trip that was meant to be at Easter, then for this trip back to Australia. We haven't had a break at all for a year, and we really need one! There's not many options for "staycations" within Hong Kong around here - we could head to Macau, or we could head into China - but I wouldn't want a medical emergency in China either!! At least Macau isn't as far away.

Hopefully Maddy will progress to the point that she is able to fly in the not too distant future - the doctors said it will be at least a few more months though (so no Australian summer for us :( ). Maybe we can make it back to Australia for my 30th in May instead...