Dwarfism Awareness Month: A Recap
October 1st begins our 2nd annual month-long dive into our story and Mira's journey. For us, dwarfism awareness month is a way for us to encourage the celebration of differences, to teach others about dwarfism and to share our story. It's a story that begins with the heartbreak of Mira's lethal diagnosis and evolves very much into one of the greatest love stories my family will ever tell. This month we are opening up about our lives and getting real about all of the challenges we face, and the amazing lessons we've gained along the way. I encourage you to follow along (Instagram only) this month and please tag a friend if you think they would like to follow along too. Looking forward to sharing with you this month!
One of the first questions we are asked when people find out that Mira has Achondroplasia is “Is that genetic?” The answer to that is yes, it’s a mutation in the fgfr3 gene that happens spontaneously at conception. But, I’m wondering if what they are really asking is if it’s inherited. Achondroplasia CAN be inherited IF a parent has it, but 80% of people with achondroplasia have average height parents. In our case, as 2 average height parents, our chance of having a child with dwarfism was 0.004%, that is nearly 1 in 40,000! Our doctors told us to play the lottery with those odds, but what they don’t know is that we have already won.
On April 28, 2016 I was 28 weeks pregnant and lying on an exam table for a routine growth scan. It was during this scan that the ultrasound technician picked up that the baby’s femur bones were measuring behind. I will never forget the look on the doctor’s face when he asked us to come into his office, a place that after 5 years and 2 pregnancies I had never seen before. At this point I had no idea what it could be. A part of me thought that perhaps the technician had got it wrong. Turns out, she didn’t.
We left the office and were sent to a high-risk specialist, and 2 weeks later down to Philly to a even higher risk specialist at CHOP. Several hours of testing later, we found ourselves at a small round table surrounded by specialists where we were kindly told our baby girls condition “wasn’t compatible with life.”
Unfortunately - that is how the journey to having a child with dwarfism begins for many. The specialists take the measurements, crunch the numbers, plot them on a chart- and tell you that your baby can't possible survive. Not with those bones, not with that chest and those lungs. Sometimes they are right. Often, they are wrong. On July 14th, at 11am, our mighty Mira arrived with a force weighing in at 9 pounds, 15 ounces. She was breathing, She was chubby. She was perfect. She was ours.
Dwarfism isn’t:
• An intellectual disability. A person who has dwarfism is typically of normal intelligence.
• A disease that requires a “cure.” Most people with the condition can live long, fulfilling lives.
• A reason to assume someone is incapable. People with dwarfism go to school, go to work, marry, and raise children, just like their average size peers.
Every Friday during Dwarfism Awareness Month, I would like highlight one of Mira’s buddies from all over the country and the world! These are the children of parents who have nothing and everything in common. Some of us have met, most have not. We are all spreading awareness this month (and throughout the year) and I am honored to introduce you!
Meet Beautiful Miss Evie, 18 months old from Seattle, Washington!
“Evie was diagnosed with Achondroplasia at 7 weeks old. She has taught us more than we ever could have imagined and has shown us that her diagnosis will never define her. It is simply one piece of the puzzle that makes her the amazing person that she is! Some things that make Evie the awesome girl that she is are her joyful personality. She is a social butterfly and loves everybody. There isn’t a stranger she won’t wave and blow kisses to! She also gives the BEST hugs. She loves music, dancing, and “reading” all the books. Dogs and airplanes are her current obsessions and she is so close to taking her first steps! We love our baby girl to the moon and back!”
Short stature is the one quality all people with dwarfism have in common. After that, each of the many conditions that cause dwarfism has its own set of characteristics and possible complications. For example, some babies with achondroplasia may experience hydrocephalus (excess fluid around the brain). They may also have a greater risk of developing apnea — a temporary stop in breathing during sleep — because of abnormally small or misshapen airways or, more likely, because of airway obstruction by the adenoids or the tonsils. Occasionally, a part of the brain or spinal cord is compressed. In just 2 years, Mira has undergone spinal decompression surgery (10 months), a tonsil/adenoid surgery (18 months), and ear tubes (23 months).
Some children with dwarfism have delays in their gross motor skills. Mira is one of them. She was unable to sit unassisted until after her first birthday and began to pull to stand just after her second. You may have noticed Mira's new walker lately. This was something Mira's physical therapist suggested we get for her. We just so happened to have friends with a daughter who used the same walker, and no longer needs it, so they very generously passed it on to Mira. From the moment it arrived on our doorstep, Mira took to it. She loves her new independence, and gets a great workout from using it! We have already seen such a difference in her posture and overall strength since she got her new wheels.
I get asked a lot how we have explained Mira’s dwarfism to Ellie and how we would recommend explaining it to other children. Children are undeniably curious. They ask a LOT of questions. (Ellie averages about 50 a day). It is so important to teach our children to accept and embrace what makes everyone different. I think there is this idea that you shouldn’t point out the differences and talk them through with your kids because then you are drawing attention to it. But, avoiding the subject altogether creates a divide between them and others who may not be exactly like them. If you are looking for the right words, I would suggest these:
Mira was born with something called dwarfism which means her bones are small and don't grow as fast as yours, so she will always be smaller than other children. Mira will still be able to everything you can do, she will just find a different way to do it.
We are happy to discuss what makes Mira different. We want children (and adults) to know that there is so much more to Mira than her size.
This is a picture of Mira with her neighborhood buddy, Gio. Gio is 3 months younger than Mira and they have known each other since they were born. I love watching these 2 interact. Mostly Mira plays hard to get. My girl.
This warm October week makes an appropriate segway to this interesting fact: Children with Achondropalsia run a higher than average body temperature than their average height peers. and in their first few years may experience increased levels of sweating. This is certainly the case with Mira.
It was hard to tell at first since she was born in July, but once her first Fall crept in, we noticed just how hot and sweaty she would get. We have learned to accommodate this for the most part, trying to keep her environment as cool and comfortable as possible. We take a portable fan with us on extra warm days, keep her bedroom cool and we never ever overdress her.
Things that don't work for Mira: fleece, footed pj's, blankets, winter jackets, Jersey humidity.
Things that work for Mira: AC, ice-cream, Antarctica, ceiling fans, being naked, shade, swimming, the Jersey shore.
At just 2 years old, Mira is an innocent toddler. She hasn’t had to block out nasty, ignorant comments. She hasn’t had to prove herself to anyone. She hasn't had to walk up to someone who’s just snapped a photo of her and demand that they delete it. It breaks my heart that one day Mira will ask me why people stare at her.
I have no doubt that Mira will face adversity in her lifetime. My biggest fear is not that it could happen, it is that when it does, I have not fully prepared her. As her mother, that is my responsibility, as it is my job to educate others head on with knowledge and empowerment. So while this month I will be sharing the true beauty and triumphs of learning from and about Mira, I am also going to share some experiences we’ve encountered along the way to help build awareness.
I was watching an episode of Parenthood the first time I heard the number. The ridiculously high, scary number. You know, the one that says that 80% of couples with special needs children will get divorced. Ouch.
Except, thankfully, it’s not true.
That likely explains why I could never find any hard data to back up that statement. Because believe me, I tried. I googled every possible word combination I could think of. Nothing. That’s not to say that couples with a child with a disability don’t face extra challenges, pressures and stress. They absolutely do.
All marriages have ups and downs. Tossing in kids can intensify whatever strengths or weaknesses are already there. Add a kid with a disability, and well, the stress is amplified. Even though they love their kid like crazy, the worrying and advocating and fighting with insurance companies or schools can wear parents down over time. But just because a marriage is more difficult doesn’t mean that it can’t become as strong or even stronger. People tend to equate more difficult with worse. Also not true.
We aren’t all that different from parents of “typical” kids. We struggle. We laugh. We love. We pay a mortgage. It isn’t always beautiful. Often, it can be messy and sometimes scary. But we never doubt the love that we have for our kids or each other. It is fierce. Just like our girls.
Happy 9 baby. I love you.
Every Friday during Dwarfism Awareness Month, I would like highlight one of Mira’s buddies from all over the country and the world! These are the children of parents who have nothing and everything in common. Some of us have met, most have not. We are all spreading awareness this month (and throughout the year) and I am honored to introduce you!
Meet Handsome Leo, 14 months old from The North Island of New Zealand!
“Leo is 15 months old and has achondroplasia. He may be little but his personality is huge! Hobbies include; dancing, waving to EVERYONE in the supermarket, harassing the neighbors cat, chasing his big brother around the house, but more than anything he loves cuddles from Mum. We adore our Little Lion.”
Children with Achondroplasia typically run behind schedule in reaching the "usual" developmental milestones. This is due to an overall decreased muscle tone, and larger head size, especially compared to rest of their bodies. In addition to her very own growth chart, Mira has her own developmental timetable created for children with Dwarfism. She has physical therapy sessions twice a week to aid in the development of her gross and fine motor skills and build up her strength. We were fortunate to find a local therapist with experience with Achondroplasia. Mira really looks forward to her "playdates" with her therapists and zooming down the hallways with her walker.
Today's insight is for anyone who is just starting their journey, not just with dwarfism, but with any form of disability or difference. When we first received Mira's diagnosis, we were devastated. I was struggling to come to terms with the fact that the family I had created in my dreams was not going to turn out how I thought it would. The word "dwarfism" sat in my throat like a lump that couldn't be swallowed. My visions of our future began to blur. Then I read this very famous poem "Welcome to Holland" by Emily Perl Kingsley and her words struck me instantly, the blur began to clear, and I began my long personal journey of clarity and perspective. It took me awhile to fully understand, but now I know that our family is EXACTLY who we are meant to be. Even better than my dreams.
Halfway through Dwarfism Awareness Month, and I think it is time to address “the word”. Did you know that the word 'midget' is highly offensive? Midget is derived from the word “midge," meaning a small, blood-sucking insect. The word traces back to the circus sideshows of the 1800s, when it was used to refer to short-statured performers for public amusement. Freak shows. Imagine for a second your own child being compared to an insect, or a freak show, simply because of one chromosome in their genetic makeup. Simply because God made them small. If this is a word you use, even as part of a joke, even to casually refer to things that are little, I am PLEADING with you to stop. If you find yourself around someone who uses this word, tell them to do the same. Remind them this is hurtful, degrading language and is not acceptable. This is not about political correctness, only simple human decency. I want you to think about Mira. Think about the journey we have been on and the challenges she will face in her lifetime. Think about how hearing that word would make her feel. Why does she ever need to hear this word and be made fun of for her physical appearance? I am teaching you in case you didn't already know about this word. And if you didn't, it's ok. Really. This is not an angry rant. I am not judging. This is what advocacy looks like. This girl in the photo is why I do it. If you know me, if you have read our story, if you have a place in your heart for my daughter and for her future, your future, your kids' future... I’m asking you to teach about this word. Teach your children that there is no place for this word in our world.
Mira is about 30 inches long which is almost the height of an average 10-month-old. She weighs about 28 pounds. Her head is slightly larger than an average 2-year-old. So, because of her shorter arms and legs, it’s hard to find things that fit her. Most shirts/pants/shorts are too long if I buy her size based on her age. But if we buy smaller sizing, it usually doesn’t fit over her head or it’s tight on her belly. I bring this up to help others realize how hard it can be to find adaptive clothing. Thankfully a few companies are coming out with a more adaptive clothing line for kids with all types of disabilities. Thank you @Target, @Zappos @TommyHilfiger. More companies should follow your lead.
Look at those gorgeous little star fish hands 😍
Mira's fingers are shorter and stubbier than other children's, her middle and ring fingers have a naturally wide separation sending them in the opposite way of each other. Her fingers don't go straight and instead make this cute little starfish shape. This is called trident hands. Despite the shorter fingers, Mira has really good fine motor skills. She already loves playing with her sister's toys, coloring and of course, holding her very own mall smoothie.
Skeletal dysplasia is an umbrella term for a group of more than 200 genetic conditions that are characterized by differences in the size and shape of the limbs, trunk, and/or skull, all of which can impact stature.
Although individually rare, collectively there are a significant number of individuals with the various dysplasias. It is estimated that 14,000 to 27,000 babies in the United States are born each year with some form of skeletal dysplasia.
The Skeletal Dysplasia Program at Alfred I. duPont Hospital for Children in Wilmington, Delaware is one of the world’s foremost centers in the treatment of skeletal dysplasia, offering expert, state-of-the-art medical and surgical care for children with dwarfism. More than 250 children from around the world travel to duPont each year to receive treatment at the center where Dr. Bober, Dr. Mackenzie and their remarkable teams work. It’s the busiest pediatric practice in the country.
Today we did our routine 180 mile round trip to Wilmington, Delaware. We have made this trip roughly a dozen times over the last 2 years. This trip was scheduled, months ago as part of the bi-annual check in of all things Mira. Measurements are taken, x-rays updated, conversation, observation. It's usually a series of back to back to back appointments that feel somewhat like rushing between connecting flights. The destination: a good, uneventful report.
These appointments are as much for us, as they are for Mira. They are important. They are intense. They are reassuring. They are exhausting. At the end of the day, Mira is still just a 2-year-old, who would rather be doing just about anything other than sitting around a table listening to adults talk about her body parts, and discussing her progress or lack thereof.
I'd say all in all, we landed safely at our destination. We have a lot we need to work on, both with her and for her, but we have a truly incredible support system guiding us along the way.
Every Friday (ok, I missed yesterday) during Dwarfism Awareness Month, I would like highlight one of Mira’s buddies from all over the country and the world! These are the children of parents who have nothing and everything in common. Some of us have met, most have not. We are all spreading awareness this month (and throughout the year) and I am honored to introduce you!
Meet gorgeous Eden Olivia! She is 2 years old from Jacksonville, Florida. "Eden Olivia is a free spirited toddler. She enjoys climbing and leaping... and everything else forbidden. Masha & Bear, her iPad, and water table are among her favorite things. She would live outside with her Moana Doll if she could. Most of all... she loves her Mommy and Daddy, snuggles and bedtime stories. " You can learn more about Eden and follow her mom, Missy's incredible advocacy journey at @edenolivia.com.
Little People of America is a national nonprofit organization that provides support and information to people of short stature and their families. LPA has more than 6,000 members across the United States. LPA is comprised of 13 Districts and 70 Chapters. Districts are made of one to five states. Chapters are more locally based and are comprised of an area of the state or county. LPA offers information on employment, education, disability rights, medical issues, clothing, adaptive products and the many stages of parenting a short-statured child - from birth to adulthood.
Over the weekend, we attended our second LPA regional event in PA. We met some pretty incredible people, all with different stories, some even like ours. While Mira's social skills need some find tuning, and I'm pretty sure she ran over about 15 sets of toes with her walker, I know LPA will be an invaluable resource for her during her lifetime.
I also think it is very important for Ellie to be exposed to other children and adults with dwarfism. Last night, she ran around with a mix of kids and didn't think twice about anyones size. She now looks forward to the "Dwarfism Dance" every year..
Today was a hard day. We have them from time to time. I don't want to gloss them over, because it defeats the purpose of advocacy. We have hard days. Days where we spend hours on the phone. Days where my fingers are sore from the emails I have to write. Days where I don't understand the law, but I know it is there somewhere. I know it has to protect Mira. Today I am exhausted, but I am also thankful. Thankful for the conference call feature. Thankful for friends willing to help where they can. Thankful for the receptionist in Outpatient for telling me that Mira makes her Monday's brighter. Thankful that I get to hang out with this girl, with the wild hair and the smoothie covered face every single day.
Those absolutely delicious rolls on her arms and legs that Mira has had since birth aren't "fat rolls." Although she certainly hasn't lost all of her baby chub, the majority of what you see, isn't actual fat. Since her bones are the only part of her body that grow at a slower rate than the rest, this results in extra skin with nowhere to go. Mira actually has all of the skin, ligaments, and muscles necessary to be average height! Her extra skin will smooth out as she gets older, but for now we are enjoying loving on it every day and cleaning piles of sand out of her thighs after a long day at the beach.
October 25th is World Dwarfism Awareness Day. Tomorrow, people with dwarfism and organizations around the world that support little people and their families unite to promote awareness and show pride. We show support by wearing green, the official color that represents Dwarfism Awareness. Thank you for following along and helping to educate others about Achondroplasia and our fierce little lady. Special thank you to @littlest_warrior for the amazing shirt for our warrior girl!
Today is Dwarfism Awareness Day!
As I consider what to share this month, the realization is not lost on me that, in the not so distant future, this will no longer be our story but Mira’s to share (or not, if that's what she prefers). With that, I fully understand that how we walk this phase of our journey with her today is going to shape her future steps tomorrow. So, thank you for following along, sharing our story and opening your hearts to us.
After the horrific and tragic events that occurred in Pittsburgh today, I have decided to share some historical information.
The Ovitz family was a family of Romanian Jewish actors/traveling musicians who survived imprisonment at the Auschwitz concentration camp during World War II. Most of them were little people. They were the largest family of little people ever recorded and were the largest family (twelve family members from a 15-month-old baby to a 58-year-old woman) to enter Auschwitz.
When the Nazis came to power, the Ovitzs were doubly doomed: under the Aktion T-4 euthanasia program, the Germans set out to kill people who were physically or mentally disabled, whose lives were considered “unworthy of living”, “a burden on society”; and, as Jews, the Ovitzs were a prime target of the "Final Solution."
Once in the camp, the Ovitz family attracted the attention of the German camp doctor Josef Mengele (known as the Angel of Death), who collected "curiosities" for pseudoscientific experiments on heredity. Mengele particularly wanted to prove that Germans were genetically superior to the groups being killed at the concentration camps. His “proof” stemmed from collecting “evidence” that Jews, gypsies, and other ethnic groups possessed degenerative DNA and its subsequent physiological traits. He considered dwarfism one of these indicative traits.
The Ovitz family quickly became his pet project. He saved all of its members from the gas chambers. But only to force them to endure a series of horrific and humiliating experiments. They were eventually freed, and were the largest living family to survive the Holocaust, while most other little people were killed, along with many others with various disabilities.
The Ovitz family is an example of the atrocities little people have endured throughout history, and their story should be told and never forgotten.
One of my first fears upon receiving Mira's dwarfism diagnosis was for Ellie. What would it be like for her to have a sister with a disability? Would she be jealous of the attention she receives? Would she even understand what dwarfism is?
I could have never imagined what life would actually be like with these two. It is magical. Ellie embraces Mira's differences and is happy to talk to just about anyone about them. She is her biggest cheerleader and is unbelievably proud of all she has achieved.
Every single night, as we head upstairs to bed, Mira slowly makes her way up the stairs as Ellie waits patiently at the top, cheering her on. She will not move until Mira has climbed the very last step.
Ellie loves Mira in a way I wish everyone could/should. She never sees her as different, as disabled, as less than. She is Mira's biggest advocate, protector and best friend. Watching these girls fall madly in love has been one of the greatest joys of my life.
It's important to note that while we don't consider Mira's dwarfism a disability, she is fully covered under the ADA (American's with Disabilities Act). The ADA is a civil rights law that prohibits discrimination against individuals with disabilities in all areas of public life, including jobs, schools, transportation, and all public and private places that are open to the general public.
As Dwarfism Awareness Month nears its end, I wanted to use this post to thank you for following along. It is my hope that you have learned something about Mira and have a better understanding of Achondroplasia and the journey we have been on. You have shown our family endless love and support and we know that with this army of people cheering her on, this girl is going to move mountains.
Although October is almost over, we hope that our message continues to be heard. Like all parents, we want nothing more than for our daughter to feel included, accepted and treated as an equal. It really does take a village, thank you for being a part of ours.
Dear Mira Joy,
This past month was all for you. I hope you can look back on this and smile knowing that there are so many people out there rooting for you, loving you and being changed by you. That NICU doctor was right about you. You ARE a revolution. I know in my heart you will do incredible things, you already have. I love you to the moon and back. You are our very own super girl.
Love,
Mommy