My Mom wasn’t sad when doctors said I was a dwarf. She was actually happy. Read why here.
This Friday, ABC’s 20/20 will do an update on Sierra and Sienna and there are always a lot of comments that accompany an article or media coverage about them. Some comments are nice and others are not. So, I thought I’d answer a few of the common questions before it airs.
Q: What about the Roloff twins?
A: Yes, the Roloff twins are twins where one is a Dwarf; however, Sierra and Sienna are twins where one is a Primordial Dwarf. So, we’re talking about different forms of Dwarfism.
Q: How is Primordial Dwarfism (PD) different from other forms of Dwarfism?
A: Little is know about Primordial Dwarfism compared to other forms. It is a very rare form of Dwarfism. It is estimated that there are between 100 – 200 PDs in the entire world. What we do know is that each form of Primordial Dwarfism seems to have its own characteristics and its own medical concerns. PDs are also different from other forms in that they’re proportionate similarly to that of an average height person–they’re just smaller.
Q: What form of Primordial Dwarfism does Sienna have?
A: She doesn’t fit into any of the currently identified forms of Primordial Dwarfism. Doctors believe she, among other PDs, have a yet unidentified form. DNA research is currently being done to identify her form of Primordial Dwarfism.
Q: Why doesn’t Sienna look like a Primordial Dwarf?
A: Primordial Dwarfism is such a complex form of dwarfism. While some people with PD have similar features, there are several that do not. Sienna is one of the taller PDs, but there are others who are taller than she is. A few other things in Sienna’s life are attributed to being why Sienna looks/sounds the way she does. For instance, many PDs have very high-pitched voices. Sienna was on Oxygen for over a year. This could be the reason why her voice is lower. Also, she broke her nose when she was about 3 years old. This could be a reason why her nose looks different from other PDs.
Q: Were she and her twin a result of fertility treatments?
Q: How can a dwarf have an identical twin?
A: “Identical” is a misleading term. The more accurate word is “monozygotic”. This means that one egg was fertilized and then split. The timing of when the egg splits can determine just how similar or different twins are. Here’s what Wikipedia says:
Despite being genetically very similar, monozygotic twins are not genetically exactly the same. A study of 92 pairs of monozygotic twins, carried out in November 2012, provided evidence that monozygotic twins acquire hundreds of genetic differences very early in fetal development, due to mutations (or copy errors) taking place in the DNA of each twin after the splitting of the embryo. It is estimated that, on average, a set of monozygotic twins will have about 360 genetic differences that occurred very early in fetal development. These genetic differences that occur very early in fetal development will be present in nearly every cell in the body. Genetic differences due to mutations can also occur later in life, but those that occur at a later stage will be present in a much smaller proportion of body cells.
Primordial Dwarfism is a genetic mutation. This mutation isn’t 100% understood either; this is why doctors and scientists are still looking for answers.
I hope this helps clear up some of the common confusions. 🙂
I also hope you enjoy the show on Friday and see it for what it’s meant to be–a celebration of Sienna knowing that she’s different, but not letting that stop her from having big dreams.
The surgery went well. It was longer than expected, but a success nonetheless.
When we visited Sienna in the recovery room and she finally woke up, her first words were, “I’m hungry.” Haha Definitely a good sign!
She’s resting comfortably at home now. (Surprising how fast they send you home from the hospital now!) And she enjoyed all the visitors she has had today. Her brother even brought her a frozen treat! 🙂
Sienna has surgery tomorrow. She wasn’t nervous until today. I think once I told her about not being able to eat after Midnight it sunk in that she was having surgery.
They’ll be repairing the opening where her G-Button was. It could either be a fast surgery or a longer one. They won’t know until they get in there.
Prayers appreciated! 🙂
Homeschool students were once thought of as students who were socially inept, “holy rollers” and nerds who read all the time. That’s not the case now for sure. Home school is effective and is turning students into great members of society who go on to college, to be business owners, socially successful, athletically successful….
Had you told me years ago that I’d be contemplating homeschool as an option for my kids, I would have told you that you were crazy.
Well, well, well. Surprise, surprise. I am now toying with the idea of homeschooling my girls.
Over the years we’ve had several issues with our school district for various reasons when it comes to Sienna’s schooling. Her special needs are unique and have put her in a somewhat No Man’s Land in the middle and it’s been very difficult to figure out exactly how to educate her. The administration has already told us that she will not get a regular diploma. It will be a “modified diploma”. This declaration during her 7th grade year annoyed me in that if felt like they were giving up on any real hope of her achieving a “regular” diploma.
Additionally, it’s pretty hard to communicate as effectively as needed with some of Sienna’s teachers with regards to clarification of assignments. Consequently, her grades suffer.
Couple that with issues stemming from mistreatment from other students and I’m really starting to wonder if homeschooling would be more condusive to effecient learning for Sienna.
I’m finding there are more resources than ever before for home schoolers.
You’re probably thinking, “How would that effect her twin and her schooling?” Well, crazy enough, Sierra is actually intrigued by the thought of home schooling.
For years now, she has wanted to graduate early like her aunt and I did and that’s actually a much harder task to do now than it was in the past. Homeschooling would allow her a better opportunity at a chance to graduate early.
I would love to get y’all’s thoughts.
Things I have to consider:
1. Extracurricular involvement such as sports and dances
2. Resources for subjects that aren’t my forte
3. Potential costs
4. Making sure that I still teach Sienna how to deal with people mistreating her and making sure she doesn’t perceive home school as running away
Are you currently homeschooling your children or have you in the past? What else do you think I should consider?
As a young girl, I loved to write and was apparently good at it. Writing seemed to just come easily to me. I would often times—and still do—find myself waking in the middle of the night to record or write down what I had just literally “written” in my sleep.
When I was growing up, my parents often said I should be an attorney because I was just too good at arguing. Debate fascinated me.
I was always known for standing up for myself and for things I didn’t agree with. My teachers didn’t always appreciate my enthusiasm for banter. I recall a particular Biology teacher, in fact. I don’t believe I received a good conduct grade in his class. Haha
Entering college with a Business major seemed logical, yet it didn’t move me. Despite my love for arguing, being an attorney didn’t intrigue me either. I still yearned for the ability to express my creative side. I seemed to have an interesting mix of the use of my left and right sides of my brain. This led me to a BA in Mass Communications/Journalism declaration.
At the time, I thought I was supposed to use that degree towards a position as a TV Anchor. Not what God had in mind…
I could argue. I could write. I was born to stand up and write to right the wrong.
While growing up and working on my skills, I had no idea what my path was preparing me for. The wrongs I would be fighting against would be wrongs against my own child.
Fast forward a few years and I’m using my debate skills to gather information and stand up for my special-needs daughter. I’m using my writing abilities to spread the word of what’s going on with her struggles in social settings, school, health… I’m able to reach out to other parents in similar situations. I’m able to help people feel like they’re not alone.
God gave me Sienna because I have the ability to write and the ability to fight. Sienna inspires me to speak out for other children. My heart aches right now thinking about the children who don’t have a voice…I see it too often and these children deserve a fight. Special children bring so much joy and perspective to life. They’re incredible human beings—angels on Earth. I accept it as a blessing to be able to use my tools to speak for them and fight for them.
Do I have all the resources and talents needed to take on the entire world of injustice? No. What I do have is the knowledge that my path had a purpose–that I’ve been given talents and it’s my duty to use them for the greater good. It is my duty to focus on changing just a few lives so that others can focus on doing the same. I’m honored that God would trust me enough to allow me to be Sienna’s mom and that together we can speak up for those who can’t do so for themselves.
If you’re trying to figure out your purpose in life right now or if you’re discouraged because of all the things you can’t do or tools you don’t have; I encourage you to take a look at what talents you HAVE been given. Look at what you CAN do.
You have been given a talent of some kind that you can use to take part in changing the world. Take part in making people happy. Take part in easing someone’s journey through a difficult time.
Find a way to use what you CAN do to make a difference. Don’t focus on perfection of the world. Focus on progress. One person at a time.
It’s Baaaaaaaaack! School, that is.
Sienna’s pretty excited about school this year. She’s going to be an 8th grader…” Top of the Totem Poll”…Top of the proverbial junior high food chain.
She wasn’t too pleased with the school clothes shopping. I wasn’t either. 😦 This is the first year that our bags weren’t filled with matching and coordinating outfits. I love seeing them in matching outfits.
At 5’4″, Sierra is easily in the Junior’s clothes, but unfortunately, Sienna hasn’t really grown much in a while. She’s gained a bit of weight, so that’s nice, but she still has the waist of a 2-year-old.
The doctor said she was most likely done growing now, so we’re really focusing on forcing her to do as much on her own as possible.
We don’t really have to buy any new jeans or shoes. We found a few basic tops that we can accessorize with some necklaces and cute earrings. She really wanted some bangle bracelets like Sierra was getting and cute belts, but they were all too big. So, I’m going to call on my jewelry making friends and scour the internet to see what I can find for her. 🙂 Too bad I didn’t take Home Ec. in school. Haha
We did find a fedora, though. She can’t wear it to school, but it was just too sassy for me to pass up! (Size 12 months, btw hee hee)
Next up is hair cuts and a few more school supplies!
We were blessed enough to have the Little People Conference in our state this year. So, it wasn’t too expensive for us to attend.
It was a wonderful week. Sienna made new friends and was delighted each time someone recognized her from the media coverage. She was on Cloud 9.
We learned so much about the advances in the genetic testing that’s currently being done. In just a short while, the geneticists have discovered another mutation that allowed them to identify another form of Primordial Dwarfism. That is so exciting!
Sienna’s particular form of Primordial Dwarfism is still unidentified, but this discovery means we’re on the right path.
Many have asked me why this is a big deal. Why does it matter if they identify a particular type of Dwarfism? Each form of Dwarfism has its own medical concerns. So, identifying someone’s particular variant of Dwarfism affords them the ability to seek the appropriate medical testing and take appropriate cautionary measures if needed.
When we returned home, Sienna almost immediately started bickering with her sister. It took me an entire week to figure out why.
She had been in a “safe zone”; in a bubble per se.
At the conference, Sienna was able to feel judgement-free. She was no longer the shortest in the room. She wasn’t treated like a baby. She wasn’t the only one.
When she came home; she was back in the real world. Back to staring at people’s backsides. Back to heavy doors and restaurants automatically offering her a kid’s menu.
So, we’ve gotten her to talk through her frustrations a bit better and have forced her to be even more independent than she already was.
She’s a resilient kid and astounds me with her joyous attitude always!