Tag Archives: short stature

Marvelous Monday

So much to say about what’s been going on, but I keep reflecting on our wonderful experience in California.

If you followed my social media pages, you may have noticed #lpaSD2014 making it’s way around with pictures, quotes, and events… all leading to the LPA National Conference in San Diego. It was amazing.

It is also something that we could not have participated in without the help and support of our parents and my aunt and uncle. Both my parents and Dave’s helped us get there (via flyer miles, rewards, food, and accommodations). I am also extremely grateful for my dearest, who works his tail off at work and then each weekend doing repairs to save up for the cost of eating away from home (yes, a BLT in San Diego is $10!). But it is more than the money. It’s the understanding. My mother-in-law was initially going to come with us (she will be attending workshops with us in Boston in 2017!), but decided that it was just too much for her… however, she still supported us going, which means the world to our family. San Diego is an awesome vacation spot, but the conference, the LPA organization and the knowledge and friendships we gain each year are invaluable to us.

#Aisforadelaide #lpaSD2014 #family #friends #dwarfism

Addie was blessed this year with a gift from a family who lost their child to a rare(r) form of dwarfism with a Lifetime Membership to Little People of America, and we could not be more thankful. Knowing  that Addie will always have access to the best advocacy, community and medical advice, even after Dave and I are not here to guide her, eases my heart. There are so many lesser known facets to the LPA organization that I hope she explores- including scholarships and a deep-rooted community- that having this membership offers her access to all this and so much more- forever! #aisforadelaide #lpaSD2014 #LPANationalConference #SanDiego

With that, the opportunity to go to as many regional (local) and national events as we can gives us all opportunity to learn, play, educate and be educated. Last year, I was a part of a panel that focused on social media and how we present ourselves as a community, and this year I spoke about why I keep pushing (advocating) for more education and awareness. Dave got to learn about different home adaptations and how he can make our house more comfortable for Addie without making it difficult for us. Even the grandparents got to go to some workshops and learn a bit more about what it’s like to grow up as someone with dwarfism, the things they can help Addie with, and just take part in the community.

#aisforadelaide #lpaSD2014 #expo #travel #sandiego

All-in-all… this was an amazing experience. Made that much better by our trip a few hours north to see my Aunt Donna and Uncle Ted. While I am forever grateful to the LPA and being able to experience national events, being able to see my Uncle Ted meant more to me than I can express. My Mom did not find her brother until she was in her 20′s. Adopted at birth, she was able to reconnect years later with a lot of research… and I am so glad she did. My Uncle is amazing- traveling to see us a lot in my youth- and coming to stay with us for much longer than he anticipated, when my Dad passed. We often joke in my family that I was a wild child, but that didn’t really happen until my Dad died. My Uncle saw firsthand how out of control I became and how quickly I down-spiraled. But still, he stayed. Day after day he supported my Mom and did everything he could to help with the daily running of the house, and the big things that my Dad had been too sick to do in his last months of life. Going out to see him, hug him, talk to him and see the spark in his eye was more than I could ask for.

#aisforadelaide #lpasd2014 #family #vacation #travel

He’s sick. I hate that. I hate seeing a man who has rocked the world, serving our country, playing a major role in aerospace development, advancing the programs that offer guide and service dogs to those who need, and most of all being an amazing family man- he’s diminishing in body… but never spirit. I was afraid he would be fragile and was instead surprised to see him, stout as ever, never batting an eye when he needed oxygen or apologizing for needing a break. Quite simply, as Ted has always been, he just is. Maybe that’s where I get my no apologies life-view from… I am who I am, be damned if it upsets you or makes you uncomfortable. And my Aunt Donna, his rock, she’s kind of amazing, too. Her love, support and drive are inspiring. A teacher for years, she set Addie up with all the fun stuff while accepting oxygen deliveries, getting towels for Addie and I to swim, her beaming smile never fading.

#aisforadelaide #family #LPAsd2014 #sandiego #losangeles #travel

There are some days that are really hard. For everyone. I have a family who has taught me, and continues to do so, that there are way more rainbows than rain if we look for them. I am thankful that we got to Cali this summer… for the sun, sand, friendships, education, family.

Have you done a big summer vacation this year? What was your favorite part?

Happy Marvelous Monday, Reader! I hope you have a beautiful week!

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Marvelous Monday

And so… we are back. Many times I spent my Marvelous Mondays writing about what I am thankful for as friends or my surroundings, but today, I want to be thankful for opportunity. We don’t go on date nights, or celebrate with fancy dinners or outings, most of the time the idea of vacation seems intimidating and daunting for the sheer cost factor, but we are never short on opportunity.

Much thanks to our parents, who help us do the big things in life. We’d love to cruise the Bahamas, take a trip to Disney, see the Eiffel Tower… but more than that, we want to learn and support this amazing community around us- the reason I even began this blog… we want to be active members of the LPA as fully as we can be!

Last week, we took full advantage of our membership and joined hundreds of others in San Diego.

#aisforadelaide #marvelousmonday #lpaSD2014

I spent hours in workshops, gatherings, meetings and group events… to learn, to think, to take notes, to listen, to share, to dream, to wonder, to play! Addie participated in her first fashion show! I met SO many wonderful people I’d only ever spoken to online. Dave got to SIT DOWN! I spoke… in front of way more of a crowd than I was expecting, and though it was not recorded (to my knowledge), I will share the piece with you soon. We made friends family.

So, what is there to not be thankful for in life? I’m not thankful that Addie will have to undergo another MRI for more imaging. I’m not thankful that we still don’t know why she’s blacking out. I’m not thankful that there are so many questions and so few answers… in general. But who is counting? What this means is that there is more to see, more to know and more to learn. Advocating for our community, for our family and for Addie herself is never done. So let’s start this week in thanks… and get ready to work hard once again!

Happy Marvelous Monday, Reader!

love,

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…and this is why. *trigger*

I have readers I’ve come to think of as family. Men and women who reach out for all sort of reasons. Some have concerns, others a missed diagnosis, some have lost a child or fear they will. And some are seeking forgiveness.

I will tell you, before you read on: this will make you uncomfortable. You might  feel anger. You may want to write and say horrible things. You  may feel sorrow, or pain, or maybe you even relate to the situation. Whatever you feel, please remember I am not just writing here- I am also moderating. While I allow attacks against myself, I will not allow them against other people who write or are featured here, nor against my child. What is ahead is hard to read. It is hard to comprehend as a parent. But I’ve never been where this woman has. Adelaide’s diagnosis came weeks after her birth. Weeks after I knew her sweet face, smelled her breath, nursed her and rocked her to sleep for endless hours.

For all of the moments I publish about general life, family, the going-ons of the Martinka family… that is to show you that even though we have a slew of appointments, tests and therapies- they do not rule our lives… I will also never stop educating and pushing to further public awareness of dwarfism. There are fatal forms, there are complications, but there are also beautiful days, moments that make me so full of happiness I feel I may explode, and most of all, times that are simply humbling to a parent.

Please remember that all decisions we make are done with the most care for our children, and made with all of the information we have at the time. I do not judge a parent for doing their best for their child. I only pass judgment on myself, and hope that my readers will as well. Understanding the plight of a parent in distress is something that we can only speculate reaction to. This is raw emotion.

This reader reached out to me from Greece. At 25 weeks, at the advisement of her doctor, OBGYN and multiple pediatricians, she terminated her pregnancy due to an in utero diagnosis of achondroplasia. She asked me to share this letter (sic) for other parents who may think this is their only option.*

 A month ago I terminated my pregnancy because my baby was diagnosed with achondroplasia. And now, I regret it every second of my miserable day. The reason I write this letter  is to inform women who have all these questions like I had and no time to decide what is the right thing to do. In my case, everything happened so quickly. I don’t really know what happens in your country. Where I am, every doctor and medical expert keep telling me that termination was the right thing to do.
What if it is not? And I think, as a mother that it was not! So keep in mind some things and then decide. You are pregnant to a baby who will be a smart, intelligent human being. Yes it will be small and perhaps will have some health problems that you will have to handle but who can guarantee that this won’t happen to your other absolutely normal babies? You are the mother! You will have the strength and the ability to keep this baby healthy and happy and if you still can’t decide just think of me. I am a miserable person who dies every day. I hate myself just because I was badly informed and weak to decide what I thought it would be the hard road! Believe me… this is the hard road… the road I chose. Just remember that every baby has the right to live. I should have known better…

While this mother is still very hard on herself and feels she should be punished, I left her with this thought, and I leave it with you too, Reader:

#aisforadelaide #educate #advocate #quotes #inspire #nojudgements


* This letter is not written by the blog owner and does not reflect nor represent the thoughts of Chelley Martinka.

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

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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Filled with Thanks

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Leave a Trail of Genius

I don’t think she even needs an introduction…
I am humbled to present Katherine Clark’s newest piece, or as I am blessed to say: My friend, Kate, wrote this. I read it days ago, and my mind is still blown. I wish I could write a commentary on this piece, but I fear the length would nearly double her own! Sadly, our family left before seeing the speakers at the LPA Conference in DC, but the message is shared so eloquently below…

If you do nothing else in life:
notepad

 

“Leave a Trail of Genius”

I would like to begin this conversation by sharing a mother’s written account on the birth of her daughter.  The mother’s daughter was born with Achondroplasia and her narrative genuinely expresses feelings of anguish, uncertainty, and hope.  She presented her “story” in front of a group of physicians at Akron Children’s Hospital back in the early 1990’s.  The mother’s intention was designed to engage inquiry, as well as enlighten physicians on the subject of skeletal dysplasia and its medical needs.  The mother stated:

It has been almost ten years since our second daughter was born.  I still remember great joy in that delivery room, but it has been a very long road since that morning.  Within an hour after her birth, our pediatrician came to my room, while my husband was happily calling all the relatives.  In the most matter of fact way, he asked me if anyone had told me about the baby? He proceeded to tell me, without my husband present, that something was wrong with her … she was what they called an F.L.K. … a funny looking kid.  He said he suspected that she had some sort of genetic problem and that they were getting ready to send her over to Children’s Hospital for skeletal X-rays.  I was literally numb.  When my husband came back into the room I was in hysterical tears and he had no idea what I was talking about.  Of course the doctor was gone.

If sharing these emotions with you makes you a little uncomfortable, they were meant to.  Not only did that pediatrician lack compassion and consideration of my lack of medical knowledge, but his greatest fault was that even six months later he had not offered any help to us as parents. Yet we indeed had a child with certain physical handicaps requiring medical attention…all I knew was a fourteen letter word that meant my little girl would only grow four feet tall.  That same pediatrician had mused that I really was not so very tall myself and that we should just ‘take her home and love her’ (qtd. in Adelson 126).

Audiences can further read about MY mother’s presentation in Betty M. Adelson’s detailed and informative book, The Lives of Dwarfs.  Yes, I said “my” mother.  Shockingly what I find “uncomfortable” 32 years later, the exchange between physicians and parents with children of varying skeletal and hormonal dysplasias (still) reveals a lack of empathy, similar to what my own mother experienced.  I’m left scratching my head as to why little has changed, but I greatly appreciated two important Keynote speakers at the LPA National Conference in Washington, DC:  Andrew Solomon and Rick Guidotti.

                I know several people who like to record their thoughts in either a daily journal or diary.  I’m not one of those people; however, I do have a unique way that I go about documenting life’s important words, phrases, and memories.  I carry with me a small steno pad; it’s usually in my purse.  And when I hear either a word or profound statement spoken by a stranger, friend, or colleague – I write it down.  Of course, I include both appropriate date and “oracle.”  I was disappointed to find I did not have my beloved steno pad in the contents of my purse, while away last week at the National Conference.  It bothered me.  Its absence broke the continuity of my learning ritual.  Determined to find a replacement, I noticed a small notepad strategically placed near the phone in my hotel room.  And at the top of the notepad read the phrase:  “Leave a trail of genius.”  Both the educator and lifelong learner in me knew I could not attend either any given workshop or keynote address without this substitute notepad.  Thus I carried it with me all week. 

I would like to share what I recorded on this notepad; I now recognize why 32 years later the conversation has varied little between physicians and parents.  Further, from my own understanding, both Andrew Solomon and Rick Guidotti addressed why there is an “absence of reason,” and I wrote about this “absence” in my last piece:  “The Truth, Not an Exaggeration.”  I believe the “absence of Reason” characterizes “America’s disability,” as well as lack of “consideration” toward our social, cultural, and physical differences.  Simply, we fear what is considered different, unfamiliar, and certainly, we tend to fear what makes us feel uncomfortable.   

 

Andrew Solomon, author of Far From the Tree and The Noonday Demon:  An Atlas of Depression, delivered a superb Keynote Address at the National Convention banquet.  He said to the audience, “I would like to share the ‘dark first,’ and then the ‘light side’” seen within the dwarf community.  I admired both his honest approach and poignant sophistication to telling a side of the story most people don’t recognize in my “rare” minority group.  The writer and lecturer on psychology and activist in the LGBT community did not sugarcoat.  Instead, he touched base on a conversation that is very real and even more so quietly discussed in LPA.  The conversation highlighted key points pertaining to mental health.  And Solomon further mentioned in his speech “medicine shortchanges identity.”  I couldn’t help but wonder if that attributes to the mental anguish and physical struggles I have seen so many dwarfs and their average height parents combat, especially when an insular physician tells a mother her daughter is an “F.L.K.”

 

I believe the crux of Solomon’s speech revolved around the notion, as he brilliantly stated:  “Our differences unite us.”  He offered to his audience the following idea: “We need to diversify the human experience.”  Solomon explained the concept behind what he calls an individual’s “horizontal identity,” as well as “vertical identity.”  The “vertical identity” is connected to the literal family tree.  Hence, the proverbial phrase – the fruit doesn’t fall far from the tree.  And 80 percent of individuals with Achondroplasia are born to families of average height.  Individuals like myself, according to Solomon, have both “horizontal” and “vertical identities.”  My “vertical identity” is linked to my family; I am my mother’s daughter.  Our bond is in our genes.  Yet, interestingly Solomon’s thesis successfully conveys the idea that my own “horizontal” identity is linked to other short statured individuals.  We, too; that is, my short statured peers have a strong bond that “unites us.”   I can see that.  I agree.  But I will be honest – It has been difficult at times to comfortably acknowledge my “horizontal identity.” 

 

Some nights I lay awake in bed.  I worry about my health.  I worry about my severe lumbar spinal stenosis.  I worry about losing my independence.  I worry about being alone.  My “vertical identity” – my family – is physically strong, athletic, and healthy.  I worry about Medicare.  Yes, it’s difficult to comfortably acknowledge my striking physical difference, and my difference requires medical attention.  I am wide awake at night… feeling bitter.  Andrew Solomon referenced Betty M. Adelson in his Keynote Address, and he quoted Adelson having stated: “The only permissible prejudice in PC America is against dwarfs.”  She’s right.  It’s hard not to feel bitter.  But I also feel fortunate; I am loved.            

 

The difficulty and bitterness, I think, reveals itself in language, as well as the rhetoric used to describe social, cultural, and physical differences.  This brings me to a candid conversation Chelley and I discussed one evening at the Conference.  And at one point in our conversation, Chelley mentioned, “I don’t like how the word ‘condition’ is associated with my daughter.”  I said to my friend, “I’m not a mother.  I’m not a wife.  But if I were a betting woman, parents have learned, rather they were told probably by physicians, that their son or daughter has a ‘condition.’”  And I shared my “mother’s story” with Chelley.  And I said to her, “My job is similar to a physician’s.  Physicians are like teachers; they are educators.  My students like Shakespeare because I like Shakespeare.  I have passion.  I am excited about literature.  That emotion is conveyed in my classroom and my students learn how to like Shakespeare from the information I present and more importantly in the way I present it.  I don’t treat Shakespeare like a ‘condition.’  Shakespeare is neither a disorder nor a summer school punishment.  Shakespeare is incredible.” 

 

Andrew Solomon, in his Keynote address, shared a telling revelation from a physician who is also the chair of Columbia University’s Department of Obstetrics and Gynecology:  Mary D’Alton.  Dr. D’Alton is also quoted in Solomon’s Far From the Tree having stated:  “’You say that the baby has a hole in his heart,’ she said, ‘and they say, ‘But you can fix that, right?’ But when I tell someone that they will be having a dwarf, they often seem disgusted by the idea’” (qtd. in Solomon 116).  Here is “the dark” Solomon was referring to in his address.  And the darkness is real.  32 years ago my mother was in “hysterical tears” when she found out her daughter was a dwarf.  Dr. D’Alton’s account suggests the “darkness” is not the fault of the physician; rather, society’s inability to Reason is to blame.  Yes, I have a condition.  Yes, my genetic condition has resulted in my skeletal dysplasia.  Furthermore, my condition needs medical attention from experienced and sincere physicians.  But society fails to recognize, as Solomon beautifully identifies, “our differences unite us.”  If society could see this union, then my condition would neither be viewed as something “dark” nor “seem disgusted.”  Yes, it can be hard to deal with at times both mentally and physically as a parent to a child with dwarfism or for a short statured individual like myself.  It is very difficult.  I will admit there are times when I find myself in “hysterical tears.”  My sorrows are real when society excludes my worth, intelligence, credibility, and integrity as an educator, woman, and person.  But I am happy to recognize my vulnerability is my greatest strength.

 

Yes, it has been difficult at times to comfortably acknowledge my “horizontal identity.”  Yet age has helped.  A lot of things get better with age.  The stunning Marisa Berenson shared similar views in a documentary directed by Timothy Greenfield-Sanders.   About Face was a documentary that showcased photographer Timothy Greenfield-Sanders’s personal interviews with some of the most popular faces in the fashion and modeling industry.  On an intrinsic level, I connected with Berenson’s statement when she referred to the mind’s ability to change with age.  Berenson stated, “When you get older, you build something else in your core, which goes beyond the physical, because it has to.”  Berenson’s statement reveals to me the “light” Solomon discussed in his Keynote Address and the literal light photographer Rick Guidotti uses with his camera in order to showcase “Positive Exposure.”          

 

Positive Exposure is an amazing organization founded by Rick Guidotti that has set out to quite literally and figuratively “redefine beauty.”  LPA invited Guidotti to the National Conference, and it was there when I received the chance to meet him in person.  He didn’t shake my hand.  Instead, he got down on his knees and hugged me.  And what surprised me is not what he did as much as it was what he said: “My goodness you are absolutely beautiful – Gorgeous!”  All that he captures with his lens is beautiful.  It’s beautiful because it’s not humanity that he understands; rather, he can recognize its existence and irreplaceable worth.  Guidotti, I am sure, would agree with Solomon:  “Our differences unite us.”  He, too, delivered an engaging as well as illustrative presentation with a strong message:  “We need to put the humanity back in medicine.”  Yes, I agree.  I do not want physicians to tell me I am “disfigured.”  I do not want physicians to label me an “F.L.K.”   

In a conversation one-on-one with Guidotti, just a few short moments before he asked if I would be willing to “smile for the camera,” I said, “I can relate to Mary Shelley’s Creature in her masterpiece Frankenstein; or, The Modern Prometheus.”  Guidotti’s eyebrows furrowed for a quick second as to express intrigue.  And I continued, “The Creature wanted nothing more than to be accepted by his creator – Dr. Victor Frankenstein.  And it was most upsetting for the Creature to realize his 206 bones and Mind were neither appreciated nor acknowledged fairly by society.  Society saw the Creature as different.  And society will fear what it considers different.”  Guidotti’s eyebrows furrowed, again.  And then he posed the question: “Are you a writer?”  I just smiled and said, “Shelley wrote, ‘Beware; for I am fearless, and therefore powerful.”

 

References

About Face.”  HBO Documentaries.  HBO.  30 Jul.  2012.  Television.

Adelson, Betty M.  The Lives of Dwarfs.  New Brunswick:  Rutgers UP, 2005. Print.

Guidotti, Rick.  “Positive Exposure.”  LPA National Conference.  Washington Marriot Wardman Park, Washington, DC. 1 Jul. 2013.  Conference Presentation.

Solomon, Andrew.  Far From The Tree.  New York:  Scribner, 2012. Print.

—.  “Our Differences Unite Us.”  LPA National Conference.  Washington Marriot Wardman Park, Washington, DC.  3 Jul. 2013.  Keynote Address.

 

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

You Educated Yourself AND Won $25!

Thank you so much to Lynn- our winner- for educating herself and others about dwarfism! Lynn is mom to a LP, too!

This cute face wants to thank everyone who joined in the effort to educate people about dwarfism, and will continue to do so!

You Liked AisForAdelaide and Understanding Dwarfism, and that won you $25! (I’m sure you already knew this, as I emailed you, but I figured I would share it with the world!) I am quite excited for all the LIKEs we received, and I hope that everyone continues down this path of education! Becoming aware is the first step to understanding more about LP.

October is Dwarfism Awareness Month and I am hoping that Lynn, and you, my lovely readers keep spreading the knowledge!

A few things to remember:

* There are over 200 types of dwarfism. Achondroplasia (what Addie has) is the most common.
* Over 80% of people with dwarfism have average height (AH) parents and siblings.
* It is very rare to have any type of mental impairment with dwarfism- I made this bold because many people have come up to me and shared their apologies and compared her to being autistic. When I say many, I mean more than 10. While I do understand people are trying to learn, please know that dwarfism is not related to autism.
* Preferred terminology: “little person” “short stature” “dwarf” “having dwarfism”. The word “midget” is slang, antiquated and will not be tolerated by myself, my husband, my family or anyone we know.
* People with dwarfism are able to do the same things as average height people, perhaps with some adjustments- but just as capable.

Please know that we are not looking for a cure. There is nothing wrong with Addie, or any other child or adult with dwarfism. She is beautiful, happy and perfect. Simply, like other little people, she is just small. She may need surgery in the future, but many people get surgery. A lot of people ask me if there is a cure, there isn’t. How can you cure her from nothing?

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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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