A Guest blog in honor of Dwarfism Awareness Month Editor's note:
October is Dwarfism Awareness Month and while it's something rarely discussed, there remains a certain amount of social acceptance using words that are demeaning and little understanding about what dwarfism is and what it means for families facing the diagnosis. Brandi Chambless is one of those family members. This is her story. -AB
In honor of Dwarfism Awareness Month, I want to tell the story of how dwarfism happened to us. Happened. It wasn't something our family would have ever imagined. We didn't know it was possible. Our otherwise normally dysfunctional large Cajun family hadn't had much exposure to dwarfism and I will admit that it was nothing to hear the word "midget" at the workplace water cooler without a second thought.
How could we have known that the "M" word is the ugly first cousin to inappropriate words like racial slurs that have been cruelly and commonly aimed toward undeserving human beings? To be completely transparent, we really hadn't ever given it much consideration. Not much at all.
But on June 12 of 2012, that all changed when our family met Kelsey Quinn Hebert. As with the birth of any child, the expectation of meeting a new family member is great enough to gather large groups of friends and family who wait with anticipation near a glass window, keeping watch over an empty incubator, hoping for the first glance of someone who will now be a part of the family tapestry.
That was us, just minutes before we met her.
My sister Ava labored while we watched over her then two-year-old first-born princess and smooth criminal Annie, as we enjoyed one another's company. I wondered if my new niece or nephew would arrive in style just as Annie had, when my grinning brother-in-law, J.J. Hebert, announced that "We got Annie!" following my sister's C-Section.
So during one particular stormy June day, the mystery of the new baby's sex was solved when this time the package arrived as my ghostly-white brother-in-law entered the waiting room to introduce another girl! A little pink girl with a head full of dark hair and, of course, naked as a jaybird! Everyone in that waiting room, whether they were with us or not, became an Hebert for about 10 seconds. We were screaming, hugging, laughing, and crying. There's that normal dysfunction I mentioned earlier. I think someone was even eating a fried chicken leg from Popeye's. Spicy.
The more we admired our magnificent new hunk of love, who we instantly nicknamed "Stormie", my Mom began to notice something that I did too, but I've never admitted until right now. She had very short legs. It was a little odd, but I figured that two average height parents probably wouldn't make a very tall baby. We just kept the party going and waited to see Ava in recovery, especially me - since she is my kid sister by 12 years, though I feel more like her twin since she has become a grown up.
That is why when her pediatrician, Dr. Brian Bailey, came in to tell Ava something very important, I felt privileged to be the only one in the room with her as J.J. was seeing to the many details of having a wife who had just had a C-Section, a two year old who was badly in need of attention, cars, suitcases, pacifiers and diaper bag placements.
"We're noticing some signs of Dwarfism."
It didn't really quite register, but we smiled and thanked him. Little people. That was like those little people that I've seen on TV. But that couldn't be us, because we hadn't ever had anything like that in our otherwise perfectly normal dysfunctional family. We didn't know it at the time, but 80 percent of people with dwarfism are born to average height parents.
"We will run some tests and let you know what the results are."
Ava and I tried to process this information, just as J.J. reentered the hospital room. As she told him the news, I remembered her surprising him with a most thoughtful gift just an hour earlier. It was a framed photo of Kelsey's ultrasound and an 8-month pregnant Ava expressing the quiet sign, as if keeping a secret. The mat was pink. The sex of the baby had not been a mystery to Ava. Only she and her photographer had known all along that she was having a girl. As with every mother to be, Ava had undoubtedly pondered many things in her heart, though never a condition like the words Dr. Bailey had used:
A-CON-DRO-PLAY-SHA
I slipped away from the crowd to let the two young parents discuss things, though many visitors who hadn't heard the news of Kelsey's possible condition still wanted to catch a glimpse of this little black-haired wonder.
I wanted to run so far away, maybe somewhere back into my childhood where the bullies were or possibly to a water cooler at some corporation and tell them all about Kelsey and what an amazing gift she was, though I had only just met her! I thought about all the times maybe I might have been some kind of Shallow Hal by being guilty myself of not seeing people for who they are from the inside out. I wanted to tell everyone about the hardest tears my sister ever cried when Dr. Bailey called to confirm the test results. It was true. Ava's perfect newborn had a condition called Achondroplasia. Dwarfism.
There was some initial uncertainty and seeking of answers to questions like: Will she be able to have children? How will we be able to comfort her when she is ridiculed or will we at all? Why did this happen? At first, we didn't even think to ask questions about her education and other everyday challenges. But once it became clear that there would be some practical needs for specialized medical information and other types of support, we wondered, more importantly - Will she die?
Now that we have celebrated Kelsey's first birthday, I can see how Ava and J.J. are both gracious and resolute in letting the world know that she is like every other child, only shorter. They have found support in a group called Little Cajuns, the Little People of America affiliate headquartered in Louisiana.
Little Cajuns shares the common mission of LPA, empowering people with dwarfism to achieve their potential. The group advocates for communities in which people with dwarfism can pursue educational, employment, and social opportunities on an equal playing field. In addition, they assist members and their families with such issues as parenting and adoption and provide medical and other resources to those in need. With over 200-plus known forms of dwarfism, the needs are varied, but shared by an estimated 460 people in Louisiana and 650,000 worldwide.
Truthfully, the more I learn about little people the bigger I become. Trust me when I say that something in Kelsey brings out tenderness in all who encounter her. I didn't say pity.
She, no doubt, is one who possesses a beauty that you will likely not find in the stereotypical pageantry of any high school dance line or some Miss America preliminary. Nonetheless, her condition does not diminish what we have discovered in the smiling eyes of this master-designed person with dwarfism. She embodies a form of beauty that I can see with my eyes completely closed and my heart wide open. To know her is to love her.
Though Achondroplasia is a diagnosis we would have never expected, we are grateful for the miracle of Kelsey and that we are the ones who have been chosen to witness the unfolding eternal impact of such a woman to be. We are assured of the kind of hope and future for her that sometimes brings fresh tears as we await her first steps into her life's higher calling. She may be little forever, but with the support of friends, family, the Little Cajuns, and an all-knowing Creator, we are able to rise up in the midst of this storm, show ourselves strong, and courageously bear this condition with Kelsey.
Sweet Kelsey as happy as can be
To read Ava's account of Hebertable Condition, click here to read more.