Thursday, June 20, 2013

Off to the US of A!

I have been so busy lately that I don't even know if I have mentioned on this blog yet, we are off to North America TOMORROW! We will spend most of our time between New York and New Brunswick, Canada and will be gone for a total of four weeks. This trip has been a long time coming - we were planning a trip to the US when I was pregnant with Maddy and we cancelled it due to the complications. It is somewhat ironic that this time, we are going having just heard similar (but oh so different) news. 

Most of this trip will be spent just the four of us, travelling around through New England. But there are two "highlights" of this trip. First of all, my younger brother is finally marrying the girl I told him ten years ago was perfect for him! And my two girls will be flower girls :)

Secondly, we plan to go and see the leading orthopedic surgeon in Maddy's diagnosis, Dr William Mackenzie. I've heard nothing but good things about Dr Mackenzie and am eager to have his opinion on Maddy's condition and future treatment options. I'm thankful that our orthopedic doctors are willing to consult with him as it's unlikely that we will be able to travel to the US for surgeries. 

We will have other highlights as well, NYC, Boston, Philadelphia, roadtripping through coastal Maine... but those are the two main "events". The rest will be a whole lot of relaxing and spending time together. 

I probably won't be blogging much over the next four (or five) weeks until we settle in back to HK, but you never know. 

I also want to thank so many of you who in the last 24 hours have poured out so much love and support for Bernard and I. I'm thankful to have such good friends.

Until next time :)

Wednesday, June 19, 2013

Holding onto Hope - again

In this pregnancy, although Bernard and I had come to accept the possibility of having another baby with dwarfism, we were of course hoping that this child would not have dwarfism. For one, having a baby with dwarfism is a lot of extra work. Doctors visits. Therapists. Working a lot harder to do things that come naturally for other kids. Secondly, dwarfism (particularly diastrophic dysplasia) is debilitating. While people with this condition are usually mobile to some extent, they have restrictions on that mobility. They can't walk as fast or as far, and mobility can decrease as they age. Thirdly, particularly with this condition, people often suffer from chronic pain as their joints deteriorate. In many ways, this is the worst thing about diastrophic dwarfism. And who would want to choose that, if we could pick? Finally, for myself, I thought that after the trauma of the last pregnancy, having a "normal" pregnancy would be healing for me. I never appreciated so many things with Lana. I didn't appreciate being able to breastfeed. Or to bring her home from the hospital with me. Or being able to do whatever we wanted without multiple appointments a week throughout her first year. I was wanting to have another "run-of-the-mill" baby that I could really appreciate every single thing that we missed with Maddy. 

On the other hand, I've recognised that so many positives have come into our lives because of Maddy's dwarfism, and that although we didn't choose it, it is a part of who Maddy is and I wouldn't change her for the world. I also know that there could be benefits for Maddy in having a sibling with the same condition as her - camaraderie, support, understanding... things that we as "average height" parents cannot fully give her in the same way that someone who shares a diagnosis can give her. 

Despite all of that, I have not prayed for "my will" to be done. Just like the gender of children is (usually) out of the parents' control, so it was in our situation. And I've prayed that God will complete our family (as this will likely be our last child) with the child that He knows is right for us. 

This week, we found out that our third (probably) daughter also has diastrophic dysplasia.

There are mixed emotions of course - Disappointment? a little. Fear? not really. Acceptance? a lot. 

Is there a chance that the doctors are wrong? Simply - no. The limbs are already off the charts. The hitch-hikers thumbs are exactly the same as Maddy's hands. The feet are slightly clubbed. Small jaw. Bell-shaped torso. All things we have seen before and recognise very clearly. For "average babies", these issues do not exist at this stage.

It's only been in the last few days that I've realised that this pregnancy can be healing too. The worst thing when I was pregnant with Maddy was that fear of the unknown. The searching for a diagnosis. Not knowing if it was lethal or not. This time, that fear is completely gone. There's no need for "prenatal diagnostics" because we know the diagnosis already. Is there still unknowns? A little - there is a range of severity with diastrophic dwarfism, even with between siblings. So this baby could be less severely affected than Maddy, or she could be more severely affected. We don't know until she is born.

I've chosen not to register yet at the public hospital where Maddy was born simply because I don't need the extra stress. I have a wonderful doctor who is happy to support me through the rest of my pregnancy, although we both know where this baby needs to be born. We both agree that technically, my pregnancy is not "high risk" to me, I'm not at risk of premature labour, there's no extra care that I need (other than frequent ultrasounds just to make sure the little one is growing). So I can at least have a "normal" pregnancy. That in itself is healing.

Please continue to keep our family in your thoughts and prayers - I'm sure that we will have ups and downs, even though this was not a completely unexpected outcome. Also please pray for our child - that she will grow stronger, particularly her ribs, lungs and airways. Pray for the doctors who will care for us during the pregnancy and for her after she is born. And for our family as we will possibly be spending this Christmas in NICU (although it would be really nice not to!)

We are all older and wiser, and a lot more educated, than we were this time three years ago. "It's not our first time at the rodeo", they say. This time, we're holding onto hope - again :) And with a whole lot more confidence, and a lot less fear this time too.

Monday, June 17, 2013

Ma - I very small...

We try to be very open about Maddy's dwarfism in our family. I've heard stories of kids with dwarfism starting school and not even realising until then that there is something "different" about them, and then it comes as a huge shock to them when they are told "Oh by the way, you have dwarfism!" I don't want that, I want Maddy to always know (in an age appropriate way) that she has dwarfism and that's ok. As a result, we talk about dwarfism at home. Usually to Lana, since she is older and asks more questions and makes more comments. She understands that Maddy is small because she has dwarfism, and that she will never grow as tall as most adults. She also thinks at times that when she was a baby and was small, that she must also have had dwarfism but she's grown out of it now. It's a process, but I want for there to always be that dialogue there. 

Maddy is often mistaken for a "baby". People ask me all the time whether she is 6 months old, or 9 months old... they try to guess her age and are way off. The fact is, at first glance she does look that young. Her hair isn't even very long yet and she's the height of a 6 month old so it's a natural mistake. She is in fact very much an almost-three-year-old, walking and talking, getting into mischief, being cheeky and silly, singing little songs... She both acts and thinks like any other nearly-three year old. I often explain to people "She's not a baby, she's just very small", or "She's not a baby, she just looks a lot younger than she is". At this stage, I think that's the best explanation. Particularly being in Hong Kong, most people (particularly non-Native English speakers) have no idea what you're talking about if you mention dwarfism. 

For ages, if you asked Maddy if she was a baby, she would say "Yes! I'm a baby!" and giggle. I think she liked being the baby, and maybe was called "baby" so often that she thought it was true. Recently though, she's been telling strangers "I'm not a baby!" and rightly so - she's not! 

The other night, I was heading to bed and I heard Maddy was still awake. Since she's still in a cot, she can't sneak into our room in the middle of the night like Lana would at that age. I thought it'd be nice to smuggle her in for some cuddles. As we were laying there, staring into each others eyes and every now and then grinning and giggling like schoolgirls staying up after curfew, out of no-where, Maddy said to me "Ma, I very small".

I was taken aback at first, and said "Yes Maddy, you are". It's the first time she has commented on her size by herself. I'm sure she's heard it a bunch of times. I still don't know how aware of this she really is, but I figure it's baby steps. 

She is very small, and that's ok.