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! 🙂
This weekend my husband and I were out and about around town and came across a promotion a local business was having for St. Patty’s Day. It was a “Best Leprechaun” contest.
My husband and I started to chuckle and thought, “Sinny could enter and she’d be a shoe-in!” (In case you don’t know, our daughter Sienna, whom we call Sinny, is a Primordial Dwarf.)
After chuckling for a bit longer and reminiscing about how she dressed up as a leprechaun for Halloween several years ago, we got into a conversation about whether or not this sort of contest was offensive. BTW, she picked that costume out by herself and was adorable.
Part of our conversation included a discussion about how easily some people are offended. We feel like many times people are too easily offended as if they’re looking to be offended. If you listen to the world with “ready to be offended” ears, you’re going to be offended and life will not be as enjoyable for you.
In our family, we are not easily offended. In fact, when we were interviewed by Jay Schadler for a feature on 20/20, he discussed with us how we have a very “honest way of approaching” my daughter’s medical conditions; so honest in fact, some people are shocked with it. “Life is what it is,” was my response. You have to deal with it as positively as you can and not take yourself too seriously. We feel like for most part, people don’t say things out of hate or disrespect. We have found that most often people don’t actually understand what they’re saying and don’t understand that it could be hurtful.
Let’s take a common phrase regarding “the short bus.” This is a phrase I don’t like and while I don’t like it, I have found that most people haven’t given much thought to why they actually say that phrase and that it could be hurtful. People use this phrase out of ignorance. Ignorance is what we should focus on rather than assuming people are hateful.
So, next time you hear an offensive term, perhaps strike up a friendly conversation with that person about why they use that term and try to educate them on how it could be hurtful. They may not actually know and you may find that they did not have malicious intentions behind their words. As humans we don’t often like to be told what we can and cannot say, but by communicating with others the potential hurt of particular words/phrases, perhaps they’ll come to their own understanding and choose to refrain from using such words and phrases.
Yes, some people still say/do things out of hate, but we need to take it upon ourselves to decipher the difference between ignorant speech and hateful speech and, in both cases, strive to educate.
When dealing with people who still speak out of hate, you can do your best to educate them, but cannot control their actions. Yes, words CAN hurt, but the words you tell yourself are the most important. You are wonderfully created!
Now go give yourself a pep talk and a hug! 🙂
We had the pleasure of attending a gifting suite at The Golden Globes this past weekend in Hollywood!
It was so much fun! We met several celebrities, had our pictures taken with them and enjoyed showing them Sienna’s Locket. They loved it!
Sienna was so excited that we found some cute high heels for her to wear! Unfortunately, though, it was a lot colder there than we thought it was going to be when we packed our clothes. Sienna was freezing!!
After the gifting suite, we had a book signing and Sierra had her LA singing debut that night!
One thing I did notice while we were in LA was that so many of the sinks in the restrooms were so high–even the soap and towel dispensers. I’ve put the places we visited on my list of places to contact about my Equal Restroom Access for Little People Movement. I was quite surprised the restrooms weren’t more accommodating. LA seems like such an aware place where they’re very sensitive to making sure accommodations are made for people with special needs. So, I was very surprised.
The people we met with were so excited about the message Sienna’s Locket is spreading. Everyone is looking forward to the second book in the series!!
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.