Hi Miggy! Thanks for having me back again. I previously shared a spotlight on my second daughter, Maddy, who was born with diastrophic dysplasia, a rare form of dwarfism. Since then, her little sister, Briella, was born with the same diagnosis. Despite them having identical mutations on the identical gene (there are a few different mutations which can cause the same condition), they are so different - both in personality as well as the way their dwarfism has affected their bodies. Our whole experience has been hugely different the second time around as well, partly since we have now moved from Hong Kong back to our home country of Australia. I share our dwarfism-related journey on my Facebook page here, and in the past I blogged at Madeline-Hope. Thanks for letting me share Briella on your spotlight!
Miggy: Nicole! Hi and welcome back! You have already done a spotlight with your daughter Maddy but are coming back to talk about your third child Briella. As you said she has the exact same condition as Maddy, and of course they are siblings but everything is totally different. Starting at the beginning when did you know Briella was also going to have dwarfism? How did finding out the second time around differ from the first?
Nicole: After Maddy was born, I wasn't sure if I wanted to have a third child! To be completely honest, I was very traumatised by my experiences in my pregnancy with her (when we weren't sure if she would survive) as well as her four month stay in NICU in Hong Kong under conditions which are hardly present any more in the developed world (we were only allowed to see her in very strict visiting hours, and Maddy was only allowed to meet her big sister once in her first four months). We knew in advance that we had a 25% chance of our next child also having diastrophic dysplasia (dwarfism) and I wasn't sure if I was prepared to go through all that again! We always wanted three though and in the end with time, we decided to go for it.
Since we knew we were carriers, we were looking for the dwarfism very early. There were signs of it at 14 weeks - but at the time the doctors suggested that she might have dwarfism AND a chromosomal abnormality (she had a cystic hygroma - something that Maddy never had). That was completely unexpected! We had the maternal blood test which checks for many of the trisomies and that was all clear, so in the end they told us it was probably only the dwarfism.
Second time around in some ways was easier and harder. Both because I knew what to expect! I didn't have the same fear of the unknown - but I did have a knowledge of the tests, appointments, therapy - all that... and I knew that would pretty much double! I was sure she wasn't going to have dwarfism so I was pretty shocked when I was wrong.
Miggy: How do Maddy and Briella's needs affect your day-to-day life? Or do they? What are the main differences you see between these sisters?
Nicole: The main way that their needs affect my life currently is the very frequent appointments! Briella was born with talipes (clubfoot) and this was completely new to us as Maddy didn't have that. Usually with talipes, they do what is called serial casting where every week, the feet are stretched into a more neutral position and casted in that stretch. Then the following week, they take the casts off and stretch them some more and put the casts back on. So Briella has so far had around 8 weeks of casting - and probably around 10-12 sets of casts altogether. It's a lot of time at the hospital! And that's before all the doctor's appointments.
Another difference between the sisters is that Briella has mild to moderate hearing loss. This is something which isn't uncommon for her condition - but again, Maddy didn't have this so it's new to us again. She has just started to wear a bone conducting hearing aid which fits onto a fabric headband and transmits the sound via vibrations through her skull. It took us a while to figure out how to get her to wear it but we found that with a little bonnet over the top, she can't take it off.
With Maddy, we are currently have a lot going on trying to figure out a way to increase her mobility. We've recently come to the conclusion that she can benefit from both a power chair as well as a walking frame. It's been a long road with lots of trials to get to that conclusion - and we still don't have our own chair or walking frame! In many ways, Maddy is our guinea pig (as awful as that sounds!) and I think that with many things, Briella has an easier time since we've already worked out what works for Maddy. I'm sure that one day, these mobility aids that took so long to get for Maddy, Briella will just inherit! Along with all our knowledge and experience that we've had to figure out along the way.
Miggy: What are the biggest worries you face for your kids and do they differ from child to child?
Nicole: It's funny, I definitely worried a lot more with Maddy - and with Briella I know from experience that I don't NEED to worry about so much. I used to worry about things like mobility but after seeing how freeing a wheelchair can be, I know that they will ALWAYS have mobility options, no matter how their body works (or doesn't work). I used to worry about how well they could use their hands since their fingers are small and don't bend, but I've seen how they figure things out how to do things in their own way (sometimes a bit slower but they get there!)
I think my main worries now are very long term worries... I hope that they can stay on top of their schooling despite the possible need for some pretty major surgeries and rehabilitation. I hope that they can find a place where they can have a career or a family, or whatever they want, and not be discriminated against because of their needs. I hope that they can find their own network of people who love and support them through their lives. I hope that they can contribute to society and find joy and satisfaction in their own lives regardless of their physical differences. I don't even know if I would call these "worries" as much as hopes...
Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?
Nicole: We talk about dwarfism a lot in our family and it has led to some funny conversations. One time, my oldest daughter Lana (my only child without dwarfism) was on the bus with us in Hong Kong. She was very chatty with a lady on the bus, and this lady asked her how old she was. Lana responded "I'm a hundred years old, but I'm small because I have dwarfism!" More recently, I was talking to Maddy about a little girl in her preschool class. Besides Maddy, this little girl is the smallest in the class. I was asking Maddy if she knows how old she is, since the preschool class includes kids between the ages of 3-5. Maddy said "I think she's five but she must have dwarfism too!" (I'm pretty sure she doesn't!)
Miggy: I always like to ask moms how they would like other people to treat their child, so how can people best approach or respond to your kids? Has this answer changed since having Briella?
Nicole: I just read over my answer from my last spotlight and I think the answer is still the same - treat a child according to their age or ability rather than by their size or appearance. If a child is obviously able to talk, talk to them and see if they talk back to you! It's ok to ask questions - it's even ok to ask the child questions if they are happy to talk to you. My one main pet-peeve is when I see people whispering or pointing, or shushing their kids when their kids take an interest in mine. Yes we get that Maddy and Briella look a bit different (plus are super cute!) and we'd rather talk about it if a child is inquisitive, rather than shushing them, teaching it's something to be ashamed or frightened of.
Miggy: I know from firsthand experience what a special role siblings can play in your special needs journey, but what about having two siblings with the same condition? How has that been? Do they seem to have a stronger bond, do they even notice yet? Is there anything you’d like to share about your other children and their relationship to your daughters Maddy and Briella?
Nicole: I definitely think that Maddy and Briella have an exceptionally strong bond - I don't know if they can sense their commonality - or if it is just that Maddy is very maternal and patient with Briella. Maddy and Briella also spend the most time together as Lana is in full time school and Maddy's preschool is only part time. Lana is very independent and probably would have been quite happy being an only child. Her relationship with her sisters is often more of a teacher/supervisor/boss (typical oldest child?) and Maddy and Briella are not always the compliant students that she would hope for! There are often different clashes between all three for various reasons, but they all love each other and a fiercely protective of their sisters!
Miggy: You shared a lot of great lessons that you learned after having Maddy. Do you have new lessons to share since having Briella? If you could go back in time and tell yourself anything about having 2 daughters with dwarfism, what would it be?
Nicole: I've always been a believer that when you have a baby, you get the child that was meant for your family. Having Briella really confirmed that for me. I had an idea that I was going to have a typical baby and appreciate it so much, and that experience would "heal my trauma," so to speak. In the end, I was wrong - having another child with the same condition but going into it knowing that ultimately everything was going to be OK was far more healing than what would have been possible if Briella didn't have dwarfism, I think!
Nicole, thank you so much for sharing your experience--again! While my third child didn't have limb differences it was definitely on our minds and I remember thinking exactly what you said above--it would seem to be both easier and harder the second time around. I will say that I think it's great that they will always have each other to relate to and that's cool to see they already have a close bond. And like you, I think we got the children we were meant to have, and further I think our children were born exactly as they were meant to be. Give those girls big hugs from me and best of luck to you and your adorable family!
You guys! If you know someone who you think would be an amazing spotlight participant have them email me at thislittlemiggy at gmail dot com! Don't email me to tell me about them--that never results in a spotlight--but tell them about the blog, the spotlight and then have them email me. I'm always eager to learn more and share these stories with all of you...so many valuable insights, stories and most importantly people. In the end I'm not sharing a syndrome, a condition, a chromosomal disorder...I'm sharing a person, a family and their story and their little link in the chain of humanity and how they matter to everyone around them. It's good, good stuff. So lets do this.
Hugs and have a great weekend.