Tag Archives: little people

Every Six Months…

We made it to Delaware… with minimal traffic- which always makes me happy! Being in the company of doctors who are so confident and can answer questions that I forgot I had, or that I never even thought of always calms my mind.

When we got into the room with Dr. Bober, we sat down and Addie started playing. We talked a lot about where she was developmentally, her walking, her sleep- the usual. We then talked about her ears- which are at the top of my worry list. With her tubes coming out and her infection, we came to the conclusion that she will, most likely, end of with another set. Also, interestingly enough, we discussed the idea that her adenoids could also come out. Our ENT, locally in Rhode Island, spoke about a 50% chance that if we remove the adenoids with another set of tubes that a recurrence of tubes would be unnecessary. Dr. Bober assured me that this number is not reflective of children with achondroplasia.

A new lesson in life.

So… we will check her ears in a few weeks, see if there is fluid in there, and then take it from there. Should fluid still be in there, we will check for swollen adenoids. Fluid, tubes. Fluid and swollen adenoids, tubes and adenoids. Plan of action- simple! Of course there are a million steps in between, but to have a start and an end point makes the middle ground a bit easier to navigate.

So we are moving out of the worry of hydrocephalus, as her soft spot is closed and she has no signs, as well as the concern for central apnea (which seemed to disappear after 6 months) and kyphosis because Miss A is up and walking… and her x-rays looked amazing! Hearing that her spine looks great is nothing short of wonderful news!

And what are we looking at now? The bowing in her legs, which is something Dr. Mackenzie really keeps an eye on. Obstructive apnea and being aware of the signs, such as snoring and bad sleep patterns. And we also have to be more conscious of ear infections, especially because Addie’s tubes fell out already… but we already talked about that! :)

Some interesting facts for expecting mamas:
We have a 2-3% chance of having another child with achondroplasia.
A Level 2 ultrasound after 30 weeks will give us answers if there are size concerns.
We could still have a child with dwarfism without knowing (just like with Addie!).
Bonus?
We aren’t concerned. Knowing what we know now, we are thrilled to be welcoming another baby into our family!

… and then Dr. Mackenzie. After we ended up doing acrobatic acts on the floor:

#aisforadelaide #babyyoga

#aisforadelaide #yoga #downwardfacingdog

Colleen and Mac came in to examine my sweet yoga girl. After a few looks at her, we took to the halls of DuPont for some walking action. Make that running! Knowing that she’s been falling sideways a lot, I was worried about her legs and knees… but thankfully her legs are just the way they are (for now). We are having x-rays done to make sure her legs are going in the right direction and, as usual, monitor if she has any pain or increased falling.  Addie does have the typical hyper-extension in her knees, but she also has hyper-mobility that causes her knees to arc sideways, which could be adding to her falls (but not bad per se).

As expected, we will be going back in 6 months (really 7) for her next set of appointments and are excited for what lies ahead. The best part of going to DuPont are the answers, the new knowledge and knowing that the next time we see these specialists we will have a whole new world opened to us. Given that we see the doctors every 6 months we are never given too much information that we worry for months to come, but we always leave with things to think about.

… we hope we can work with our insurance going forward and are looking to generate more information about United’s vendetta against major medical providers and bringing them back to Nemours! (Hello high hopes!)

Until then, We hope you had a wonderful Sibling Day… Addie loved giving her soon-to-be baby sibling a kiss while we were on a beautiful family walk:

#aisforadelaide #siblingday2014

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Filed under Achondroplasia

Marvelous Monday

What a wonderful weekend- jammed packed with all I am thankful for and all things dwarfism! I have mentioned LPA about a million times, and all the support they offer to the LP community, but there is so much more than that.

There are lifelong memories made by friends who see each other a few times a year. Parents who lament all the silly things that we get that no one else truly does. Not life-altering stuff, but finding shoes that fit, are cool and also comfy. Why moving a faucet can make life easier for your child. How to hem jeans. It’s the same old parenting things we all think about, but rarely do we encounter so many seemingly minuscule things over and over and over.

The best part? When Addie gets into a large group of kids, there are no worries because this community is watching over her- everyone.

This mama may be suffering from serious pregnancy hormones, but when Jackie and Avery (two fabulous young ladies) took Addie’s hands and walked her to their dance circle complete with other girls, and encouraged her to dance, laughed with her and never let her out of their sight, I walked away, took my seat, gripped a cup of ice water and swallowed my tears. My face was hot. My body felt cold.

#aisforadelaide #firstdance #lparegional #2014

My daughter already has an amazing life.

I watched what her Spring and Fall would bring each year, as our District regionals pass by. I saw middle school dances and girlie laughter about things that us parents would just never understand. As I sipped my water, surrounded by women I’ve grown to love in our brief, but powerful 21 months as LPA members, we laughed at my verge of crying.

#aisforadelaide #ladiesnight #LPAspringregional2014

I have an amazing life.

These moments are not forever. We have our struggles. We have some of the happiest moments of our lives without the LPA, or anything related to dwarfism. Being little, or big, or average does not define us. Having such fabulous friends, regardless of distance, giving my child the opportunity to live her life and being guided by those around me. That defines me. There is nothing like knowing that your life changes shape when you let go of the reigns and just live.

With $100 in our pocket and a cooler full of fruit, bread, peanut butter and tuna, we went to Cape Cod. It was our first regional with our LPA district. We got to ask questions. We got to answer a few. I shared a conversation with men and women. Some were my height, some were not. But the conversations were the same. Our kids were being crazy, they all needed to sleep, we all enjoyed the sunset at the banquet, our clothes seemed to be getting tighter as the New England winter ceases to end. I joked with my ladies about this and that. We all ragged on each other, shared hugs, high-fived the  kids.

Being members of the LPA has allowed us to NOT define our family by dwarfism, but to learn in a safe, well educated environment for ourselves, our daughter (and future baby!) and those who will learn from us. To balance our lives between doctors and normalcy, because at the end of each day, I am doing the same as any parent… reading 102 books before bed, watching my child guzzle more water than they consumed the entire day and praying they don’t spring a leak in the night, kissing her cheeks and watching the monitor (sure, I’m also listening for snores and leg movements, but that’s neither here nor there). Addie? She’s just like your child. And me? I’m just like you. Tired, stressed and loving every minute of this crazy, fast-paced thing they call Parenting.

#aisforadelaide #swimming #capecop #seacresthotel #lpaspringregional2014

And my random  of the week? If you missed it before, don’t forget to check out this awesome video below <3 <3 <3 (Yes… I’m a bit excited to share after holding it in for 13 weeks!!!!!)

Happy Monday, Reader!!!

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Filed under Marvelous Monday

The Truth, Not an Exaggeration

I have written about Kate before HERE, but it’s Kate’s time to shine. Below is her Guest Blogging spot! Happy to have you, Kate.

004

I am an educator.  I am the middle child.  I am a Scorpio.  The three qualities presented help to explain my thought process in conversations, like the one seen here.  As an English Instructor in higher education, I know my students will appreciate informed opinions that offer opposing viewpoints.  Growing up with an older sister and younger brother, I noticed I had a bit of a rebellious streak – I was nothing like the other two.  And Scorpios by nature are said to be very intuitive, mysterious, and quite often these individuals possess a passionate, “dog-on-a-bone” like mentality.  Kind of like the Tom Petty song, “I Won’t Back Down.”  This gives reason as to why I chose not to give up, sugar coat, or ignore my opinions on the subject of “dwarfism” and how it’s viewed, as well as poorly discussed in the media.  There is definitely a missing element in the discussion pertaining to “tolerance” and “acceptance.”  And I hope this piece offers a unique perspective on how the conversation can be addressed.

 

“The Truth, Not an Exaggeration”

Our culture has difficulty defining what is “normal” because it does not exist; rather, normalcy is defined by what the Status Quo deems either comfortable or familiar.  Our ability to recognize, accept, and tolerate will help create an understanding of who we are as individuals.

I am writing to start a new conversation because there is something missing in the current dialogue regarding acceptance and tolerance.  It is easy to recognize how we live in an imperfect world, but it is truly impossible to understand why we don’t value imperfection.  Human discourse naturally wants to avoid conflict as well as dismiss conversation that makes audiences feel vulnerable.  I think that’s foolish.  Great conversation has the power to inform, to interpret, and to advocate even if it makes us feel the slightest bit uncomfortable.  I would like to take this opportunity to inform my audience, as well as advocate for individuals with dwarfism.

New York State is one of several states to declare October as National Dwarfism Awareness Month, and we have New York Assemblywoman Nancy Calhoun to thank.  Yet, the entire country should be involved in this conversation.  However, topics concerning dwarfism make some audiences feel quite uncomfortable.

Rosie O’Donnell openly admitted on her show in February 2012 that she has “a mild fear or anxiety around little people.”  Ms. O’Donnell shared her feelings with a fellow comedian—Chelsea Handler.  O’Donnell went on to say in an attempt to further justify her level of “anxiety”:  “What the problem is for me is that I can’t put the two things together.  This is an adult person, but it’s a little person.”  Audiences were not sympathetic toward O’Donnell’s phobia.  Both O’Donnell’s diction and comedic ability to manipulate satire distracted her audience from what was said.  Ms. O’Donnell is not alone when admitting she fears “little people.”

I live in fear knowing how dangerous words can skew perception.  It doesn’t matter what is said, but who, exactly, is saying it.  I was extremely uncomfortable when I heard a celebrity, someone like Rosie O’Donnell who has the potential to wield a lot of power, employ language in a discussion that grossly illustrated both human cruelty and pure stupidity.

I have the most common type of Skeletal Dysplasia:  Achondroplasia.  The word “dysplasia” literally means ‘abnormal growth.’  Skeletal Dysplasia is a medical term that characterizes certain types of dwarfism—primarily ones that are affected by abnormal skeletal growth as a result of various genetic mutations.  To add greater social and cultural context to the conversation, the phrase “Little Person” might strike a familiar chord.  Yet, I strongly dislike the label.

My job description expects me to teach the power of rhetoric, the danger fallacies hold, as well as the importance of connotation.  The word “little” carries negative weight.  It is not a desirable adjective used to describe either physical stature or mental ability.  The word has the potential to emasculate when it is used to describe the average adult male.  The word can imply what is considered weak, miniature, cute, or child-like.  Fisher-Price makes ‘Little People’—the popular toys children play with.  I personally do not like inheriting a label that references such unattractive qualities.  The label makes me feel like I have to fight in order to avoid feeling less than.  I don’t want to wear such heavy armor every day.  There are times when I feel embarrassed.  I feel embarrassed for who I am.  And, of course, the embarrassment ultimately stems from feeling like an outcast.  O’Donnell claims “part of her problem”—she simply “can’t put the two things together”; that is, a phrase (e.g. ‘Little Person’) that labels an adult, but also draws reference to a small child.  This explains why society has a tendency to point, stare, and snicker.  Yes, I am short statured.  No, I am not a Little Person.  Being called “little” makes me feel excluded.

Both acceptance and tolerance were absent from the conversation that originally aired on The Rosie Show.  Ms. O’Donnell’s “mild fear” is commonly shared.  I’ve met several adults who have expressed the same level of “anxiety.”  Part of their unease is created by a label.  And it’s the label that makes me feel like an outcast.  I support George Orwell’s thesis:  “The slovenliness of our language makes it easier for us to have foolish thoughts.”

Both the art of persuasion and the pure manipulation of language clearly define rhetoric.  Of course, celebrities can manipulate just as must power as an informative news program.  Unfortunately, 20/20’s play on words carried a connotation that mocked more than it informed.  “Extreme Parenting:  Meet the ‘Real Life Seven Dwarfs’” was a title used to illustrate a segment that originally aired in May 2012.  Barbara Walters introduced 20/20’s audience to the “Johnston family.”

The title alone was rude.  I don’t understand—parents who choose to raise 5 children are considered “extreme”?  However, like me, each member of the Johnston family has the most common type of Skeletal Dysplasia:  Achondroplasia.  That information is neither recognized nor understood by the general public.  I am aware of that.  However, I would hope the general public would first recognize and then understand there is nothing “extreme” regarding a family of short stature.

It is “extraordinary”—not extreme—that both Mr. and Mrs. Johnston are raising a beautiful family.  Simply, the show bothered me.  Its presentation was appalling.  I did not appreciate how the Johnston’s “extreme” parenting was compared to a family raising their children in a nudist colony.  The purpose of the hour long news program was designed to inform audiences on types of “extreme” parenting.  The news likes to sensationalize—but come on.  Apples and Oranges.

I am a minority.  Quite frankly, I am what I call a “rare minority.”  I choose the word “rare” to define population.  There are roughly 30,000 individuals with dwarfism living in the United States.  Generally, it is rare to meet, or get to know, or see in a community a person of short stature—let alone live next door to a family of seven.  My rare minority status is something I consider extraordinary.

Bottom line: 20/20 made more of a spectacle than its weak attempt to illustrate a positive message.  Perhaps, that was the point.  If so, that’s sad.  I want to hold the media’s selected diction responsible.  The media’s ethos, either joining the conversation or teaching a lesson in dwarfism, needs to change.  Both the exaggerated puns and hyperboles are harmful and insulting.  For example, if TLC knocked on my door and offered to produce a reality show with me as the “star,” I would say absolutely.  Heck, television pays top dollar.  The Emcee in Fosse’s Cabaret was right:  “Money Makes the World Go Round.”  No doubt, my school loan would be paid off in no time.  There is one condition; however, the executive producers cannot call the hypothetical show The Little Professor.

Society has used a label to identify only my appearance, not who I am.  And as a result, I find I have an additional responsibility to command full integrity.  My opportunity to command integrity, acceptance, and tolerance presents itself in a single month.  Just one month with only a handful of states paying attention.  Ironically, that seems ridiculous.  It seems “ridiculous” because why should a month either determine or “regulate” my integrity?  Morgan Freeman, perhaps, would agree.  Freeman expressed his own opinions regarding Black History Month—it’s “ridiculous.”

Freeman’s conversation was part of an interview that originally aired on CBS 60 Minutes.  The late Mike Wallace asked Morgan Freeman:  “Black History Month, you find it…” and before Wallace could finish his sentence Freeman quickly stated: “Ridiculous.” Freeman went on to further question, “you’re going to regulate my history to a month?”  Freeman made a valid point.  Freeman continued with his response and said, “I don’t want a Black History Month.  Black History is American History.”  And at that precise moment Wallace chimed in and asked, “How are we going to get rid of racism?”

“Stop talking about it,” Freeman expressed with great enthusiasm.  He finished the conversation by telling Wallace, “I am going to stop calling you a white man and I am going to ask you to stop calling me a black man.”

In other words, I am asking the media to stop pointing out the obvious—my short stature does not define who I am.  The understanding of humanity in that interview was brilliant.

I don’t want to sound like I am solely attacking the media; rather, the short statured actors who give in to the slap-stick comedy routines and dwarf tossing games are equally at fault.  It is their behavior that characterizes the pathetic and grotesque perception.

Society claims one must be tall in order to be a leader. Can a politician be a leader? Yes.  President Roosevelt proved to his country, even when the media did not want to disclose the very fact, he could lead a nation from a wheelchair.  However, State Representative Ritch Workman, Republican for Florida House, District-52 lead discussion in the fall of 2011 that made an attempt to repeal House Bill 4063—also known as the Florida state ban on ‘dwarf tossing.’

Workman was quoted in an article published via Sun Sentienal.com having stated, “They need to know that I’m not doing it for wit and humor,” he said, “that I’m doing it sincerely to give people a little piece of their liberty and freedom.”

Dwarf-Tossing is a crime against humanity.  It’s purely offensive.  It’s harassment. It’s a form of bullying.  This drunken, stupid sport has nothing to do with “liberty and freedom.”  What I don’t understand—the short statured individuals who want to participate in the said “sport.” I don’t understand how an individual in their right mind would find this spectacle either “okay” or “fun.”  Those who want to participate make situations extremely vulnerable for other individuals like Martin Henderson—a man Peter Dinklage referenced in his acceptance speech at the 69th Annual Golden Globe ceremonies.

While enjoying a pint and smoking a cigarette outside an English pub, Henderson (a dwarf) was approached by a stranger who physically lifted him roughly three feet above the ground, and then proceeded to throw him.  The stranger threw Henderson as though he were an inanimate object.  After the incident, Henderson was left partially paralyzed.

I can’t imagine our country or a lawmaker allowing a ban to be lifted that would further perpetuate cruelty. The very thought makes me feel enraged.  What happened to Martin Henderson also happened to me.  Luckily, however, after the incident that took place at a bar near my university, I wasn’t left partially paralyzed. I was left only mortified.  Embarrassed.  Utterly humiliated.  I, too, was a victim of physical assault.

Brent Staples, in his widely anthologized essay “Black Men and Public Space,” superbly writes:  “Over the years, I have learned to smother the rage I felt at so often being taken for a criminal.”  Staples wrote this essay in 1986 for an issue of Ms. magazine.  The essay also comments on societal fears and misperceptions about race; in that, it has been uncomfortable to discuss.  Staples writes, “I grew accustomed to but never comfortable with people crossing to the other side of the street rather than pass me.”

I, too, “have learned to smother the rage.”  It frustrates me that I have “inherited” the stereotype of a clown, doll, and court jester.  Of course, the stereotype is created by the actor of short stature, and it is then further perpetuated by the media.  20/20 and other talk shows and reality television programs should learn to look beyond the label.

There lies a better story in the truth than the exaggeration.  And here’s the truth:  The knowledge I share, as opposed to my obvious physical composition, greatly impacts my (college) students in the classroom.  And I think that is worthy of a “real” news story.

The knowledge I share stems from my formal education experience.  My intellect, intuition, and sincerity are qualities that clearly define who I am.  If it sounds romantic, it’s meant to.  The Romantic writers, like Charlotte Turner Smith and William Blake, valued the Imagination.  The Imagination—the human mind—has the ability to control Reason.  Every masterpiece is flawed.  And in a Romantic world, humanity accepts imperfection because it recognizes we live in an imperfect world.  Dwarfism is considered a disability.  A disability is looked at within our social and cultural context as a flaw—an undesirable or unattractive trait.  Further, our society will often feel very “uncomfortable” when presented with anything that is considered either “undesirable” or “unattractive.”  Perhaps, the absence of Reason is America’s disability.

I mentioned there is something missing in the dialogue concerning both acceptance and tolerance.  The inclusion of imperfection represents what’s missing.  It’s clear; we need to be considerate in order to be tolerant, let alone accepting.  Society will never be tolerant as we wish to see it because we might never find value in acceptance.  It’s not tangible enough.  We live in a world based on materialistic motifs.  We live in a world centered on privilege and class.  We live in a world where the widening gap between the “Haves” and “Have Nots” remains ever so wide.  Again, that’s sad.  We should be more considerate of imperfection, and we should place higher value on intelligence as opposed to aesthetic quality.  After all, imperfection is Normal because it is real.  John Keats wrote, “’Beauty is truth, truth beauty,’—that is all ye know on earth, and all ye need to know.”

And a fortune cookie revealed its wisdom to me the other day at lunch: “You are the center of every group’s attention.”  I believe that to be true.  I am the center of every group’s attention not for my beauty, however.  I was once told beauty must have symmetry. My disproportionate and disfigured skeletal frame does not have symmetry.  Yet, my striking physical stature commands a strong presence that values Imagination, as well as a society where tolerance should be recognized and where acceptance should be appreciated.

 

Katherine P. Clark

Rochester, NY

References

“Extreme Parenting.”  ABC 20/20.  Host Barbara Walters.  ABC, WHAM, Rochester, 4 May 2012.  Television.

Freeman, Morgan.  Interview by Mike Wallace.  CBS 60 Minutes.  CBS. WROC, Rochester, 14 Jun. 2006. Television.

Handler, Chelsea.  Interview by Rosie O’Donnell.  The Rosie Show.  OWN.  HARPO, Chicago, 15 Feb. 2012.  Television.

Sanders, Katie.  “Florida Lawmaker’s ‘Zeal to Repeal’ Easier Said Than Done.”  Sun-Sentinel.com. Sun Sentinel, 22 Oct. 2011. Web.  3 Jan. 2012.

Staples, Brent.  “Black Men and Public Space.”  The Seagull Reader:  Essays.  2nd ed.  Ed. Joseph Kelly.  New York:  W.W. Norton, 2007. Print.

 

The above piece was written, referenced and edited by Katherine Clark.

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Filed under Community, Educate/Adovocate/Make Change, In Other's Words

LTYM

So… as I’m sure many gathered, I was not chosen to be a presenter at Providence’s inaugural Listen to Your Mother show. Instead, I am still choosing to participate. I will be going to support some of my favorite friends and bloggers as they share their stories and undoubtedly make me laugh, cry and reflect on life as a woman, a mom and a wife. HERE is the announcement post!

Because I wasn’t selected to read, I will share my piece here with you now. It may seem familiar, as it is a brief edited and slightly different version of my first post.

I’m not sure where to begin. I could go back to camping.  That amazing 2-days my husband, Dave, and I spent in Maine, creating our beautiful daughter.  It wasn’t really romantic, but it got our minds off of the previous 6-week troublesome time, which began with an early pregnancy miscarriage- often referred to as a chemical pregnancy.  In the weeks following, when the cramping eased, and the doctor reminded me that we could try again right away, we knew we needed a weekend away.  With our handsome puppy at doggie daycare, we took off to Wells, Maine.

It was a beautiful weekend.  And we made Addie.

A few weeks after we got back, I got a faint line and after watching the timer flash for 3 minutes “PREGNANT” popped up on the digital screen.  Excited, but scared to repeat the past, I tried to hide my findings from my husband; but, a few hours after he went to work, I texted a picture of the test to him.

***

Hearing her heartbeat was the most beautiful music ever created.  Rapid and deep, hearing her life beginning in me was one of the best days of my life, and over the following months, I took the tests, ate well, gaining only 26 pounds, and was then blessed with a beautiful, but long, delivery at 38 weeks, 5 days.

A clear-lunged Adelaide Eileen came into the world April 17, 2012 at 10:32am at 7 pounds, 7 ounces and 18 inches long.

18 inches is in the 5th percentile for height in a newborn.

At Addie’s one month check up, her head was in the 75th percentile, weight 10-25th percentile and height still in the 5th.

At two months, her head was in the 90th percentile, weight 25th percentile, and her height had dropped below 5th.

I cried.

We left the doctors’ office with an appointment for a fontanelle ultrasound to check for Hydrocephalus and another for x-rays of her long bones.  At 5’7 and my husband standing 5’9, I was unsure how we had such a short baby, but her head was our main concern.  Along with the appointment at the radiologist’s office, Addie left the office with thighs sore with vaccine shots.  Later that night, June 19, 2012,  a fever of 101.5 struck, and was just the beginning.

***

At 7pm, June 21st, we arrived at Hasbro Children’s Hospital in Providence, RI. Addie presented with a mild-grade fever, lethargy and a lack of appetite. She endured hours of IVs, needle pricks, blood draws, a CT scan and four, yes four, unsuccessful attempts at a lumbar puncture.  Without the spinal cord fluid needed to run a meningitis test, Addie was started on broad spectrum antibiotics for the night.

A tentatively negative read was done of her CT, for everything, including Hydrocephalus- a concern due to the rapid growth of her head. Although this brought relief, there was another test we knew needed to be done for her general heath (an x-ray of her long bones), and there was the issue of what was making her ill at the present moment.

***

A call from our pediatrician to the attending physician in the hospital prompted the bones of her body to be x-rayed, specifically the long bones in her arms (upper) and legs (thigh), pelvis, spine and skull, which took all of 10 minutes and we were wheeled back to our room.

A geneticist came to do some measurements. I felt hot and sick. There were tears forming, but, as a mother, I had known Addie was too short for her age. We discussed nothing specific, only mentioning that there could be a genetic anomaly, and that’s why she was called in to look at the x-rays. As the doctor left the room to read the x-rays herself, I held my knees to my chest and practiced breathing.

When she returned, I was cleaning out my breast pump pieces in scalding water. She pulled a chair up to talk. I stayed at the sink, burning my hands in the water. When she didn’t continue her diatribe, I knew the x-rays had shown something. I finished washing the bottles and made small talk. If I never heard what she had to say then she had never said anything. Right?

“After reviewing the x-rays with the best radiologist in Rhode Island, we have both confirmed the diagnosis of Achondroplasia,” Doctor.
“What’s that mean?” Dave.
“Dwarfism,” I said. Blankly staring at something that wasn’t there.

Nurses were sent in to do a blood draw on my 9 ½ week old baby. It took 7 attempts and two days to complete. The conclusive results came back in a few weeks…

The most common skeletal dysplasia is achondroplasia, a short-limb dysplasia that occurs in about 1 of every 15,000 to 40,000 babies born of all races and ethnicities. It can be caused by a spontaneous mutation in a gene called FGFR3, or a child can inherit a change in this gene from a parent who also has achondroplasia. The average adult height for someone with achondroplasia is a little over 4 feet.

The information runs far and is quite plentiful.  In the United States, approximately 10,000 individuals are estimated to have achondroplasia. It affects about 1 in every 40,000 children. However, this number varies, depending on the source. Eighty percent of all little people have achondroplasia. Approximately 150,000 persons have achondroplasia worldwide. The worldwide population of little people is approximately 190,000.

People don’t know what to say- I’ve already encountered that. But if I may be so bold as to make a suggestion, if you don’t know what to say, say nothing.

I can’t say that I’m not scared, or angry, or confused, or hurt. I can say I’m so happy, blessed and in love. Little people live normal life expectancies and can do anything they want.  It’s not a disease. She does not need to be cured.

She cannot ever do gymnastics.  If I said this didn’t hurt me, I would be a liar.  I was a gymnast, and some of my fondest memories are swinging my long and lean body around the bars, sleep over camp and long drives to state meets. She cannot participate in other little girls’ gymnastics parties. But, she can swim- and I look forward to every mommy & me swim lessons like it’s Christmas day!

And here I am. I’m angry.  I’m really angry. I’m so ashamed of myself for, potentially, making life harder for her.  I am, in my mind, at fault. I want to help her be the strong girl I know she is, but how can I do that when I’m falling apart on the inside? I’m angry this will impact her. I’m angry other children won’t get it. I’m angry that people in her family, at least not everyone, will understand and respect and be “ok” with her stature. I’m angry people may point, laugh, call her names, misunderstand her, and hurt her. I’m angry, damn it. I really am.  Perhaps some of my fears are masked by this anger, which I’ve always been so quick to feel, but for now I’ll call it a pure emotion and hope it unfolds well.

As I watched her sleep in her hospital bed, I saw she’s the most beautiful girl I’ve ever seen. She has my little nose and crooked pinkies, and Dave’s ears and lips.  She is an angel. She’s a perfect combination of the man I will love forever and myself. Maybe she’s not your ideal baby- but she’s certainly my ideal: happy, healthy, with dimples, bright blue eyes, 10 fingers and toes, sweet baby coos, and a sigh that ends with her collapsing on my chest.

In truth, as I wrote this, she was getting better from whatever brought us to Hasbro in the first place; No fever, less lethargic and eating much better. But she was still there. I battled with her being sick and getting a lifelong diagnosis that I’m not sure the right way to process.  I reveled in the good news of no hydrocephalus and the shock of knowing my daughter will be physically different from other children.

I am scared of my reaction to other parents, when they tell me of milestones their children are crossing, as Addie’s motor skills will be slightly delayed. I am wondering what life will bring to her and how I can make sure she has the best one possible- as any parent does for their child.

Over the past few months I have tried to take all the information thrown our way in stride, and remember that some questions will remain unanswered until she reaches a certain age and the universe reveals its mysterious ways.  I’ve contemplated if I had known she would be a little person before she was born, would I feel differently… no.  I wish I had had the time before she was born to process, as it is hard to shed tears when I’m looking at her beautiful face; but I will let my emotions take their course, rely on the love Dave and I share and the information at hand to be the best parents we can be.

And so, I conclude.

‘A’ is for Adelaide and Achondroplasia.

I want to say that my writing is too specific, but I think it has to do with my presentation skills (or lack there of), as well as the fact that the women I know who were selected are A.MAZ.ING. Not just you’re such a good writer, I could never write like that. More like I should never write again because I am a disgrace! I say this in jest. So many of us are not only wonderful writers (and readers), but we are fantastic daughters, mothers, wives, parents, siblings and aunts. We are free spirits, organized and brilliant with all we do (and sometimes, not- but don’t tell).

I will tell my story for a long time… forever, in fact. I will share about my fears and insecurities, because it’s OK to feel that way and I hope all parents know that when they receive any unexpected diagnosis.

I hope to see all the seats filled at the show this year. Buy your tickets HERE and come sit by me… I’ll have tissues with me. And in case you’re wondering… I’ll be back to read another piece next year! I think I can… I think I can… I can!

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Brass Tacks

When you boil it down, there is a ton of information about parenting; breast feeding, diapering, scheduling, milestones, sleep patterns, bathing tips, birthday party ideas… these things rule the Mommy World on the internet.  But where is the information for a child who is not average? You know… the child who is above average, but below in height? Where is the information for children with dwarfism? And if you can’t find anything more than general information about dwarfism, let’s make the search easier, and pin point what we’re looking for: achondroplasia.

There are a ton of “facts”, and “the genetic workings” are explained in detail, but the deeper details, multitude of growth and development charts, information on specific spinal development, and what toys, carriers and car seats work best. Where is that information?

Well, it’s not there.

It’s not in Parenting, Parents, American Baby, Family Circle, Disney Family, OR at your geneticist’s office.  It’s not that I’m angry, I’m just confused and deterred. Who do you ask if the doctors don’t know?

I love nice people as much as the next gal, but when I want answers, I want answers. I  don’t necessarily care if a doctor is nice when there is no information in hand. It’s not a hard concept- I want to know all there is to know about everything there is to know ,so that Dave and I can raise Addie in the best way possible for her and her needs, while not forgetting our own. We are good parents doing a lot of research, spending time and energy on excavating information that a working doctor does not have time to seek. Except, the one doctor I hoped would know enough to answer questions I had without reading an article she presented to me weeks ago.

I am wholly aware that I need to be Addie’s best advocate, but is there anyone out there who will help me?

The most helpful information I got from the geneticist: Addie’s measurements. For which I provided the growth charts to be plotted upon.
…And provided the accurate reading of said charts- as the assistant, a pediatric specialist, seemed unable to read the caption under the chart stating which lines were for Achondroplastics and which were for AH children.

And so, I guess I’m really just relieved that I did a ton of research so that I could tell the doctor what she was missing, and so I knew what questions I need to delve into further with the right people. But, who are the right people?

I’m hoping to find some answers in Delaware… insurance pending. Insurance; I believe that would be a whole other blog!

On a happy note: HAPPY THREE MONTHS TO THIS BEAUTIFUL BABY GIRL!!


Thank you, one million times over, to the wonderful parents I’ve connected with who have given me more than advice- they have shared all of their medical knowledge with me- making disappointment easier to handle.  When I can’t find the exact answer I need, I know I can gain  a wealth of medical information from moms and dads who have walked the line before me.  Thank you. Thank you so much for sharing with me and helping me navigate my way as a new mom!

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Painful

A lesbian and an alcoholic walk onto a stage set…

Sounds like the start to a terrible, demeaning joke.
It is. But no one was joking about homosexuality, or being a drunk.

I hate to focus on the negative, as that is precisely what I’m trying  to overcome, but when I see this kind of train wreck, it’s hard to look away. It’s even harder to explain. There are “educated” people out there who believe themselves so righteous that they can mock another human’s right to live a normal (see: average) existence, job skills, sexuality, abilities and height based on their [alleged] phobia?

Build a bridge, ladies… then jump off. Please. For the sake of man kind, both tall and small.
Aren’t there enough self-fulfilling prophesies out there? Are there not enough people on talk shows that already hate themselves- so much so that they target others?

I find the best comedians, the ones with real talent, are the ones that can bring you to tears not making fun of a specific group of people. Rosie, you’re gay. Yay! for you. Chelsea, you’re a drunk. Yay! for you. Let me offer you both  a medal of honor. Both women have their differences out in the public eye because they chose to share. Addie and thousands of other little people never have the option to hide their difference if they want to. Walking into a room and choosing who to let in on an intimate detail of their life is not something they will decide upon, yet people choose to  mock.

Dwarfism awareness is being adopted by states, albeit rather slowly, and yet there are still such nasty people. It’s wrong to mock the gay community- I agree, wholeheartedly. And alcoholics should be nurtured to gain control of their disease, although if self-loathing jokes are what helps for now, good luck. No one can make an addict go to rehab. Does the community consisting of little people, their parents, friends, relatives and peers not deserve the same respect? Live and let live.

Let me tell you a secret, ladies. Addie, and all the other little people you so fear, can in fact get jobs; the first female president with dwarfism was just born, you see on April 17, 2012.

And thus, I have seen this video.  I actually viewed it for the first time the day Addie was diagnosed, sitting in my chair-converted-bed at Hasboro, holding my sick little girl and wondering what this unrelated, lifelong diagnosis had in store for her. Being a new parent is challenging. Having a sick baby is hard. Being in the hospital with a sick child is painful. Having your whole world (ultimately, your child’s world) change in a day, while in the hospital with a sick child is mind boggling.

Perhaps spreading this video is promoting its evil, but my true intentions are to show people who have similar feelings how ridiculous they sound coming out of the  mouth of others. There is a slew of videos lashing out at Oprah’s network for airing this, as well as to Rosie and Chelsea Handler- please search them, and heed their words: this video is ignorant, does not and will not ever describe little people and will not be tolerated anymore.

Concluding my rage and sadness, I watch Addie’s breath come in and out and her back rises and falls. Her chest puffing out into mine as she sleeps on me. She’s not your average  baby-she’s so much more, and I am blessed to have her. I breathe in as I gently kiss the top of her head, smelling her freshly washed hair, smile and breathe out.

Being surrounded by so many good people and a new community of friends- I feel sorry for people like Rosie and Chelsea. Not for being gay. Not for being drunk. Stupid. I’m so sorry they’re stupid.

And, for some inspiration, strength and a good education, check out this amazing 10-year old, Alex!

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I Knew Before You Told Me

From the moment she was born, I knew she was different. Adelaide Eileen was born at only 18 inches, with my button nose and crooked pinkies. What she was born without was what caught my eye.

27 years ago I came flying into this world with a shock of dark hair, flailing all 21 inches of my body in a fury weighing just shy of 5 1/2 pounds.  During the 3 hours I pushed with Addie, I remember seeing her dark hair, feeling her head and then seeing her little body.  She looked just like me, but, to be honest, squat. I held my little ball of baby, loving all over her and sharing with no one.

I wanted to ask the doctors a million questions- I was shocked the next day when her pediatrician measured her at 18 inches.
I knew before I asked.  I knew she was my genetic miracle. Our little package of jumbled up genes that was perfectly delivered to us.

A daughter holds her mother’s hand for a while and her heart forever.

I was so tired, but I couldn’t stop staring. She was the most beautiful human I’d ever seen.
Watching her grow, or not, led me to think something was up- but you only think to ask the doctors a question if you think there is something wrong. In my heart of hearts I knew there was nothing wrong, just different about my little Addie. Then I read all about it. Her head was big. I was so scared. Could she have hydrocephalus? I researched all I could. I took Addie to her 2 month appointment and mentioned it to the nurse doing her measurements. She inferred that it was something she was going to mention anyway, due to her head circumference growing, and my heart sank.  I wanted to hear “don’t worry about it.” But, as you know from my first post, we ended up leaving that appointment with a script for a ultrasound of her head and x-rays of her long bones.

I took her home, undressed her and examined every inch. I saw her inner thighs and how small her hands were. The non-existent bridge of her nose. The way her legs bowed out. I saw her face, with those shining, deep violet eyes staring up at me. And she’s perfect.

After her diagnosis, Dave and I told a few people. Looking for initial reactions- a way to gauge our responses to people and learn what kind of reactions we would be fielding. And, as if getting unexpected news wasn’t confusing enough, the other shoe dropped.
People said they were sorry. Dave and I found ourselves trying to stop people from saying the wrong thing. Did we tell the wrong close friends? Was it something we said?

Nothing is wrong with her. Why are you sorry? We’re not.
It’s not unfortunate. We’re beyond fortunate to have  be chosen by this baby girl.

I knew she was the most beautiful girl from the moment she was born. She is loved to the core- and being so small, that’s a lot of love per inch!

I knew before they told me. I knew she was going to be the best thing to ever happen to me. I knew it. And I love every little bit.

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Corporate America. There’s Hope.

I was disappointed.  Using a baby carrier was amazing to me. I was a baby wearing mama. Holding my little girl to me while I did everything from the dishes to walking the puppy, felt so pure and natural to me. I love the Bjorn which has more support, but the organic look and feel of the K’Tan was just what I wanted, and I was lucky enough to have a friend who purchased it for me!  I used it once, but Addie was so scrunched in it, I decided to wait to use it for a few weeks; then we learned she was an achon baby, and my little miracle could not use a carrier.

Scrunched Addie (see above)

No carrier.

I walked into the small local shop where I got the K’Tan. I explained that for medical reasons Addie would not be able to use it, and that it was clean, had all the pieces, it was in the box and had the instructions and warranty card.  The woman behind the desk glanced at me, her eyes darted to Addie, then to a piece of paper, where she was writing a note. “Your name and number. “ *** “I’ll ask the owner and call you later, but I already know the answer is ‘no’. We don’t take anything back that’s been out of the box.”  I was confused, as the carrier is clean, and there is one in the store, on display- out of the box, that they will sell. I assured the woman that I just wanted store credit, but she seemed to be distracted, so I wheeled the stroller in a k-turn motion and walked out.

I left the shop feeling dejected.  I would have loved to shop in this store again- support a local business. I was sure that the owner would call, or understand, but a message, “Hi Chelley, this is Xxxxx from Xxx XxXx, I spoke with the owner and we can’t take it back. Sorry. Bye.” Short, not sweet and not helpful. Instead of helping a local mom at an already difficult time, the almighty dollar takes the cake.  Instead of spending a few hundred there over the next few years, they made $74 on one sale. One time and one time only.  What a disappointment.  I would wanted a call from the owner (this truly is a small business)- to perhaps speak with her.  In a small state, like Rhode Island, all the business you can get includes everyone, right?

Please know that I am married to a small business owner. The business is my husband’s passion: music. Often times he has had to turn people away from full-fledged returns in favor of store credit, but he always takes the time to discuss issues with his customers- and speaks to them personally. To be told, “no”, was a lot to take, especially because the woman I had spoken to was so sharp with me and didn’t seem to hear what I was saying. I love the carrier, but medically I can’t use it. Isn’t the human condition a benefit here? The rules can be changed. Exceptions can be made. But, you have to listen.

And not I have to make the request that  no one give Addie gifts from small shops… clearly they cannot bend to be helpful to a new mom who is in apparent distress. As people serving people, looking up to see your customers, instead of down at your phone/keyboard/notepad, would go a long way. Sometimes you just want to know you were heard before a decision is passed down.

At the end of this debacle, I posted the carrier on line for a fraction of the price… and my big sister saved the day. A new mommy herself, she posted on Facebook and asked around, finding a buyer!

Sadly, however, this was just one of the few items that I was told “no” to on behalf of Addie.

Which brings me to Babies R’ Us in Warwick, RI.  I originally loved the idea of registering at only small shops, but knew we would need far reaching locations due to my family being all over the east coast (and some on the west, too!)- so BRU it was! I’ve been so happy with their assistance in returns and exchanges since the baby showers, and for this alone I was so grateful.

The Baby Einstein Bouncer was awesome! I remember seeing it and wanting it immediately; colors, lights, music and a ton of tactile activities. I was sure Addie would love it as much as I would.  Alas, this was not to be so.  Not a big deal to return, right? Wrong!!!

The box that the bouncer came in was cumbersome, so we took the inside boxes out of it and tossed the main packaging into recycling months ago; a small blessing that we never put it together. Driving to the store with Dave, he was convinced they would not take it back, while I was plotting my steps from pleading with the manager to writing corporate. We loaded our returns into a cart, including the pieces of the bouncer.

As we stood in line, I was already frustrated. Why do I have to explain things, why can’t “due to a medical condition” just be enough? I walked up to the counter with my cart full of stuff and explained, “I’d like to return some toys. I’m sorry I don’t have the main box for the bouncer, but it’s never been put together.” Michaela smiled at me and asked if we had been registered there. I felt the need to continue, “I really love the bouncer, but for medical reasons Addie can’t use it.” She glanced up from typing in my information and warmly smiled again. “No problem”, she said. While making small talk and commenting on how adorable Addie is and how she hopes she is OK, the sales associate scanned my registry info, found the bouncer, scanned the rest of my stuff, swiped a merchandise return card, handed it and the receipt to me and wished me a nice day.

I walked over to Dave, who was feeding Addie her favorite [and only food], Mommy Milk, and wanted to cry. I was so pent up, convinced that the world was against me. That, already, there were issues that would hinder Addie, but Babies R’ Us proved me wrong. A corporation caring about its customers, though I’m sure not always the case, has brought some light to the sadness I feel having to return toys that are not good for our beautiful little girl.

We got this beautiful elephant, a mirror, finger puppets, 2 books and an impression kit for Addie’s hands and feet with the credit. I think these will be great to help Addie’s development for touch and vision. I’m so excited to play with her new toys and help her develop at her own pace in a fun way!

Knowing that I shouldn’t give up on the world lending a hand is a good feeling- especially because this is just the beginning of a long road.

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Community

I belong to a New Mom’s Group with RI New Moms. All of our babies are in the 0-3 month range. All of our babies are learning to coo, watching their fists and balling them up into their mouths, tracking things with their eyes and growing up faster than we’d like. All of our babies are the same, yet different, and I’m so glad Addie’s different was so lovingly embraced.

I tried to tell everyone in the group about her hospital stay and how we learned of her diagnosis in an unorthodox way.  I wanted to make eye contact, but I couldn’t stop looking at her. I was preparing for people’s faces to drop, to see wide eyes, hear a gasp that inadvertently made its way past someone’s lips. But that never came. Smiles, head nods, and looks of compassion not pity, were all around me. Addie would be loved by these women, just as she was loved by myself.

Communities seems to be fleeting in some cases. Friends we make at one intersection of life sometimes fail to crossover as we grow, change and, ultimately become who we never thought we would be: our parents (HA!). But, I need people. I need a community of men, women and children who can tell me I’m doing the right thing for Addie.  You can never know exactly what your child is going through in life; kids get meaner by the year, after all. However, I will never be able to tell my sweet baby girl that I know how she feels because I’ve been there, too. I can taste the bitterness in my mouth, feeling like the angst-y adolescent I was over a decade ago. I want to tell those kids off and push them to the ground. I want to lose control. I want to make people who have yet to exist, hurt for reasons yet to manifest.

And so, I wait.

I watch her little chest rise and fall. I tear up every time she smiles in her sleep. I have done this since she was born. I’m boarder-line stalking my child.  I cannot help it.

I mentioned to Dave, multiple times, about how I am so shocked that she is here. One minute she was in me and I felt her move, and with each new happening (a flutter, a kick, hiccups), I felt like now this is real, but now she is here. She is lying next to me in her pink bassinet and she is real. She is real and really amazing. And she is mine. She is ours.

I suppose never having carried a life, Dave can’t totally understand my feelings, but he loves his “little bit” and I love my “bugga-boo”. We, collectively, have about 300 songs for her, stemming from the multitude of names she has, ranging from Addie-Boombaladdie to Battle-aide (when she’s battling sleep) and so many more.

When it all gets too much, and I need someone, I reach for my cell phone and email someone. Some I’ve just met in one of the many communities I’m coming to form as the cohesive guild I need for me, while some I’ve known for years and have stood the test of time.

The outreach has been unexpected. People who know people. Friends who have friends. Getting an email from someone who knows someone, or is someone who is a little person- reaching out to me, making themselves available and knowing that I just don’t know what to expect. I want to do what is best for Addie- always. I want her to have the experience she deserves in life and every opportunity afforded to her peers- whether they are large or small, short or tall. Just perusing Facebook pages and other blogs, I see happy families, college-bound students, sporting events, vacations, boyfriends, girlfriends, and happy hours.

And I am at ease.

There is a community who will help us raise Addie- it takes a village, after all. She will be loved by many, and feared by some.

But aren’t we all?

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‘A’ is for Adelaide and Achondroplasia

I’m not sure where to begin. I could go back to camping.  That amazing 2-days my husband, Dave and I spent in Maine, creating our beautiful daughter.  It wasn’t really romantic, but it got our minds off of the previous 6-week troublesome time, which began with an early pregnancy miscarriage- often referred to as a chemical pregnancy.  In the weeks following, when the cramping eased, and the doctor reminded me that we could try again right away, we knew we needed a weekend away.  With our handsome puppy at doggie daycare, we took off to Wells, Maine.

It was a beautiful weekend.  And we made Addie.

A few weeks after we got back, I got a faint line and after watching the timer flash for 3 minutes “PREGNANT” popped up on the digital screen.  Excited, but scared to repeat the past, I tried to hide my findings from my husband; but, a few hours after he went to work, I texted a picture of the test to him.

***

Hearing her heartbeat was the most beautiful music ever created.  Rapid and deep, hearing her life beginning in me was one of the best days of my life, and over the following months, I took the tests, ate well, gaining only 26 pounds, and was then blessed with a beautiful, but long, delivery at 38 weeks, 5 days.

A clear-lunged Adelaide Eileen came into the world April 17, 2012 at 10:32am at 7 pounds, 7 ounces and 18 inches long.

18 inches is in the 5th percentile for height in a newborn.

At Addie’s one month check up, her head was in the 75th percentile, weight 10-25th percentile and height still in the 5th.

At two months, her head was in the 90th percentile, weight 25th percentile, and her height had dropped below 5th.

I cried.

We left the doctors’ office with an appointment for a fontanelle ultrasound to check for Hydrocephalus and another for x-rays of her long bones.  At 5’7 and my husband standing 5’9, I was unsure how we had such a short baby, but her head was our main concern.  Along with the appointment at the radiologist’s office, Addie left the office with thighs sore with vaccine shots.  Later that night, June 19, 2012,  a fever of 101.5 struck, and was just the beginning.

***

At 7pm, June 21st, we arrived at Hasbro Children’s Hospital in Providence, RI. Addie presented with a mild-grade fever, lethargy and a lack of appetite. She endured hours of IVs, needle pricks, blood draws, a CT scan and four, yes four, unsuccessful attempts at a lumbar puncture.  Without the spinal cord fluid needed to run a meningitis test, Addie was started on broad spectrum antibiotics for the night.

A tentatively negative read was done of her CT, for everything, including Hydrocephalus- a concern due to the rapid growth of her head. Although this brought relief, there was another test we knew needed to be done for her general heath (an x-ray of her long bones), and there was the issue of what was making her ill at the present moment.

***

A call from our pediatrician to the attending physician in the hospital prompted the bones of her body to be x-rayed, specifically the long bones in her arms (upper) and legs (thigh), pelvis, spine and skull, which took all of 10 minutes and we were wheeled back to our room.

A geneticist came to do some measurements. I felt hot and sick. There were tears forming, but, as a mother, I had known Addie was too short for her age. We discussed nothing specific, only mentioning that there could be a genetic anomaly, and that’s why she was called in to look at the x-rays. As the doctor left the room to read the x-rays herself, I held my knees to my chest and practiced breathing.

When she returned, I was cleaning out my breast pump pieces in scalding water. She pulled a chair up to talk. I stayed at the sink, burning my hands in the water. When she didn’t continue her diatribe, I knew the x-rays had shown something. I finished washing the bottles and made small talk. If I never heard what she had to say then she had never said anything. Right?

“After reviewing the x-rays with the best radiologist in Rhode Island, we have both confirmed the diagnosis of Achondroplasia,” Doctor.
“What’s that mean?” Dave.
“Dwarfism,” I said. Blankly staring at something that wasn’t there.

Achondroplasia 

There’s been a lot of discussion over the years about the proper way to refer to someone with dwarfism. Many people who have the condition prefer the term “little person” or “person of short stature.” For some, “dwarf” is acceptable. For most, “midget” definitely is not.
But here’s an idea everyone can agree on: Why not simply call a person with dwarfism by his or her name?
Being of short stature is only one of the characteristics that make a little person who he or she is. If you’re the parent or loved one of a little person, you know this to be true.
But here are some facts that other people may not realize about dwarfism and those who have it.

Dwarfism:

  • is characterized by short stature. Technically, that means an adult height of 4 feet 10 inches or under, according to the advocacy group Little People of America (LPA).
  • can be caused by any one of more than 300 conditions, most of which are genetic. The most common type, accounting for 70% of all cases of short stature, is called achondroplasia.
  • can and most often does occur in families where both parents are of average height. In fact, 4 out of 5 of children with achondroplasia are born to average-size parents.

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 one of these conditions live long, fulfilling lives.
  • a reason to assume someone is incapable. Little people go to school, go to work, marry, and raise children, just like their average-size peers.

What Causes Short Stature?

  • More than 300 well-described conditions are known to cause short stature in a child. Most are caused by a spontaneous genetic change (mutation) in the egg or sperm cells prior to conception. Others are caused by genetic changes inherited from one or both parents.
  • Similarly, depending on the type of condition causing the short stature, it is possible for two average-size parents to have a child with short stature, and is also possible for parents who are little people to have an average-size child.
  • What prompts a gene to mutate is not yet clearly understood. The change is seemingly random and unpreventable, and can occur in any pregnancy. If parents have some form of dwarfism themselves, the odds are much greater that their children will also be little people. A genetic counselor can help determine the likelihood of passing on the condition in these cases.
  • Dwarfism has other causes, including metabolic or hormonal disorders in infancy or childhood. Chromosomal abnormalities, pituitary gland disorders (which influence growth and metabolism), absorptive problems (when the body can’t absorb nutrients adequately), and kidney disease can all lead to short stature if a child fails to grow at a normal rate.

By far, the most common skeletal dysplasia is achondroplasia, a short-limb dysplasia that occurs in about 1 of every 15,000 to 40,000 babies born of all races and ethnicities. It can be caused by a spontaneous mutation in a gene called FGFR3, or a child can inherit a change in this gene from a parent who also has achondroplasia.

People with achondroplasia have a relatively long trunk and shortened upper parts of their arms and legs. They may share other features as well, such as a larger head with a prominent forehead, a flattened bridge of the nose, shortened hands and fingers, and reduced muscle tone. The average adult height for someone with achondroplasia is a little over 4 feet.

Diagnosis

Some types of dwarfism can be identified through prenatal testing if a doctor suspects a particular condition and tests for it. But most cases are not identified until after the child is born. In those instances, the doctor makes a diagnosis based on the child’s appearance, failure to grow, and X-rays of the bones. Depending on the type of dwarfism the child has, diagnosis often can be made almost immediately after birth.
Once a diagnosis is made, there is no “treatment” for most of the conditions that lead to short stature. Hormonal or metabolic problems may be treated with hormone injections or special diets to spark a child’s growth, but skeletal dysplasias cannot be “cured.”
People with these types of dwarfism can, however, get medical care for some of the health complications associated with their short stature.
Some forms of dwarfism also involve issues in other body systems — such as vision or hearing — and require careful monitoring.

Possible Complications and Treatments

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.
Fortunately, many of these complications are treatable, so that people of short stature can lead healthy, active lives.
For example, a small percentage of 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 anatomy or, more likely, because of airway obstruction by the adenoids or the tonsils. Occasionally, a part of the brain or spinal cord is compressed. With close monitoring by doctors, however, these potentially serious problems can be detected early and surgically corrected.

As a child with dwarfism grows, other issues may also become apparent, including:

  • delayed development of some motor skills, such as sitting up and walking
  • a greater susceptibility to ear infections and hearing loss
  • breathing problems caused by small chests
  • weight problems
  • curvature of the spine (scoliosis, kyphosis, and/or lordosis)
  • bowed legs
  • trouble with joint flexibility and early arthritis
  • lower back pain or leg numbness
  • crowding of teeth in the jaw

Proper medical care can alleviate many of these problems. For example, surgery often can bring relief from the pain of joints that wear out under the stress of bearing weight differently with limited flexibility.
Surgery also can be used to improve some of the leg, hip, and spine problems people with short stature sometimes face.
Nonsurgical options may help, too — for instance, excessive weight can worsen many orthopedic problems, so a nutritionist might help develop a healthy plan for shedding extra pounds. And doctors or physical therapists can recommend ways to increase physical activity without putting extra stress on the bones and joints.

 

The information runs far and is quite plentiful.  In the United States, approximately 10,000 individuals are estimated to have achondroplasia. Achondroplasia affects about 1 in every 40,000 children. However, this number varies, depending on the source. Eighty percent of all little people have achondroplasia. Approximately 150,000 persons have achondroplasia worldwide. The worldwide population of little people is approximately 190,000.

And there, my dear readers, are the facts.

Please don’t say you’re sorry. Nothing to be sorry about. She is beautiful and we are blessed. She’s a bit small for her age. That’s all.  Mention of a TLC tv show hardly seems appropriate, after all, is social media the best judgment or indicator for life’s actuality? Asking if there is anything you can do doesn’t make much sense either, as she is a normal little girl in every way but height.

People don’t know what to say- I’ve already encountered that. But if I may be so bold as to make a suggestion, if you don’t know what to say, say nothing.

Adelaide Eileen. The prettiest girl in the whole wide world. <3

But with all this talk, I can’t say that I’m not scared, or angry, or confused, or hurt. I can say I’m so happy, blessed and in love. Little people live normal life expectancies and can do anything they want.  It’s not a disease. She does not need to be cured.

She cannot ever do gymnastics.  If I said this didn’t hurt me, I would be a liar.  I was a gymnast, and some of my fondest memories are swinging my long and lean body around the bars, sleep over camp and long drives to state meets. She cannot participate in other little girls’ gymnastics parties. But, she can swim- and I’m looking forward to mommy & me swim lessons like it’s Christmas day!

And here I am. I’m angry.  I’m really angry. I’m so ashamed of myself for, potentially, making life harder for her.  I am, in my mind, at fault. I want to help her be the strong girl I know she is, but how can I do that when I’m falling apart on the inside? I’m angry this will impact her. I’m angry other children won’t get it. I’m angry that people in her family, at least not everyone, will understand and respect and be “ok” with her stature. I’m angry people may point, laugh, call her names, misunderstand her, and hurt her. I’m angry, damn it. I really am.  Perhaps some of my fears are masked by this anger, which I’ve always been so quick to feel, but for now I’ll call it a pure emotion and hope it unfolds well.

As I watch her sleep in her hospital bed (crib), she looks like the most beautiful girl I’ve ever seen. She has my little nose and crooked pinkies, and Dave’s ears and lips.  She is an angel. She’s a perfect combination of the man I will love forever and myself. Maybe she’s not your ideal baby- but she’s certainly my ideal: happy, healthy, with dimples, bright blue eyes, 10 fingers and toes, sweet baby coos, and a sigh that ends with her collapsing on my chest.

In truth, as I write, she is getting better from whatever brought us here in the first place; No fever, less lethargic and eating much better. But she is still here. I am battling with her being sick and getting a lifelong diagnosis that I’m not sure the right way to process.  I am dealing with the good news of no hydrocephalus and the shock of knowing my daughter will be physically different from other children. I am scared of my reaction to other parents, when they tell me of milestones their children are crossing, as Addie’s motor skills may be slightly behind because she cannot learn to sit by propping. I am wondering what life will bring to her and how I can make sure she has the best one possible- as any parent does for their child.

Over the past few days I have tried to take all the information thrown our way in stride, and remember that some questions will remain unanswered until she reaches a certain age and the universe reveals its mysterious ways.  I’ve contemplated if I had known she would be a little person before she was born, would I feel differently… no.  I wish I had had the time before she was born to process, as it is hard to shed tears when I’m looking at her beautiful face; but I will let my emotions take their course, rely on the love Dave and I share and the information at hand to be the best parents we can be.

And so, I conclude.

‘A’ is for Adelaide and Achondroplasia.

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