Tag Archives: little person

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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Some Call it Luck *Trigger*

While at the LPA National Conference in DC, I attended a few workshops, one of which landed on the controversial topic of limb lengthening (ELL). While my post is NOT intended to be medical advice, it is intended to help spark a discussion. As a parent, I do not think ELL is right for our family. Let me repeat- OUR family, as in Dave, Chelley and Addie. Also not right for our family: living in a swamp, being fans of wrestling, tattoos before the age of 18, or book burning.

I can remember my youth… those days I spent counting calories and wondering if the package said “0″, what was in the food I was eating? I decided that I would punish myself no matter what. I think of ELL like liposuction for an average height woman with a beautifully imperfect-perfect body. The first time I came home and told my mom I wanted lipo, she laughed. I threw up lunch the next day. and many days after. I wrapped myself in bandages to try and trap the fat, took diet pill after caffeine pill downed with coffee and energy drinks. I battled disordered eating, diet pills, and the cover of every magazine on the book shelves. Who am I to judge someone who has the courage to go out there and have multiple procedures to change the way they look with reason? Do I disregard concerns that will someday surely haunt Addie? If I ignore her pleas, will that lead her to the sane extremes I went to as a youth?

There are so many things that run through a mother’s head the moment she hears, “it’s a girl.” Pink and bows and sugar and spice… and S#IT! All those moments of insecurity come running back. While laid back on a table with someone rubbing jelly all over your belly you remember all the talk, laughter, pointing and moments that brought you the most insecure moments of your life. Being a girl isn’t easy. In this light, I choose to celebrate more than Addie’s difference, because difference is just a state of relevance in the moment you stand in. Her brilliance, laughter, charm and style:  I WILL. As for dwarfism? I will celebrate her physical appearance. I don’t choose to, it’s something innate. The way her curls frame her face, and her smile infects my depressed heart to light. The way her tiny hand makes its way into mine before we wake in the morning. The way her legs curve and dictate her authoritative walk. The protruding tummy she so proudly pats when she is hungry for “yumm”.

I will celebrate her for all that she is. Her fingers wrapped in my hair, those elbow dimples, and the curve in her back- all making her uniquely beautiful. They make her Adelaide.

But this is about the National Conference… so let me start with my insecurity. A woman. There was a woman who walked around with an iPad or Tablet device trying to show pictures of her son. She was even at the workshop that sparked the initial writing of this post. While the workshop wasn’t about ELL, there was a strong overtone at the end, and this woman would not let go. I was uncomfortable when I saw her in the room, and my discomfort was never eased.

I appreciate ALL opinions, but ask me once, ask me twice, ask me three times… you’re out. I felt like I was under attack, even though the woman wasn’t following me, per se.

So… what did the interlude of this workshop teach me? Before I tell you, I want you to know that the panel of this workshop was made up of doctors and their assistants. There was a lifetime of experience before me and I wrote as fast as I could.

With limb lengthening, which I will continue to refer to as ‘ELL’, doctors usually want to begin the process at age 4 or 5. The major issue with this is that age 11 is around the age when you can truly engage a child in a conversation that holds weight and consequence comprehension. One panel member feels that beginning the process at its crucial time (ages 4/5) is malpractice because the child cannot truly assert his or her feelings. I have to agree.

My issue with beginning anything… EVER… is that a child who is bound to ELL has dedicated their mobility to that as well. Swimming, running, swinging, playing with friends in the cul de sac, or late night bonfires on the beach are hard to accomplish if possible at all. Being a kid should not be defined by staying in place or physical therapies… and putting yourself through that for adding inches to your arms and legs (just arms and legs.. feet and hands stay small) doesn’t seem quite as happy as a childhood full of experience!

There are a lot of risks with ELL, too. Things like trapping nerves, paralysis, narcotic addiction, seizures, risk of becoming a quadriplegic… People have died. Yes, died. There is always the possibility of psychological impact, where I hope that the screening before the procedure even begins would alleviate that risk… but changing your whole body, causing deep scars that will be your cross to bear forever, while changing your identity from a Little Person to not-quite-average is certainly an exercise in mental strength. But there are many successes, too! In fact I feel blessed to know a family who has been so open with their experience and has given me a lot of education to other reasons (beyond physical) to participate in ELL. In fact, the young woman who has so generously shared her journey amazes me, for I would not have the strength to do all she has done to achieve such success (inches). The many procedures and “down time” terrify me, however, with surgeries, waiting, therapy and then doing it all again. With this, the feet cannot be changed- so I am concerned with how different one would look with long legs and the feet of a child. After years on the legs, the arms are lengthened, which offers the least amount of complications and pain with most potential for functional benefit. Again, the hands cannot be changed. If you’re small with small hands and feet, how does one feel being less than average height, but taller than an LP with LP hands and feet? I feel torn as to how I would feel, myself, but confident that we are all put on this Earth for a reason and that reason is to be unique. I am heavily tattooed and hope that if Addie wants to make body modifications, she choose ink over years of pain and physical impairment… but at 16 months, Lord knows what she’ll throw at me at 16 years! I know I am equipping myself with the thoughts and knowledge now to answer her questions, and am trying to learn everything before the day she comes to be so that I am not judgmental of her inquiry.

Then… there’s the philosophical discussion. Should ELL even be offered. If so, when? And why? In America, only about 2-3% of LP participate in ELL, while in Italy and Spain, more than half the dwarf-population undergo the long procedure. There are many theories, but one remains poignant…
La bella figura. Beautiful figure. It’s a folk philosophy, a way of life, being beautiful. This idea extends to the thought that what you’re like on the outside reflects your soul. Could this la bella figura be controlling the subliminal belief that a person has a twisted soul because of being a dwarf? Would straightening and lengthening the body make one more aesthetically pleasing and thus have a more beautiful soul?

To answer all the questions we have as individuals and as a society, we need science. Research. A series of longitudinal studies showing us all of these things and more, but there are none. Perhaps the range is just too great, the “condition” too rare, the science too expensive or the genetic difference too irrelevant to society. Whatever the cause, the effect is less information concerning ELL- facts, science. Not theories or My Side and Their Side. Real science by an unbiased group or objective party. That is just not there, and because of that, this piece is written solely on what I heard at the workshop and my own personal feelings as the mother to a 16 month old child with achondroplasia dwarfism.

Lastly, we were left this this thought: Are LP in this country lucky that that we think we should be changing the environment not changing the people?
I don’t think it is luck, I think it is evolution. We are a young country made up of a melting pot of people. While we are not the best, greatest, most monetarily responsible country- we have some attributes that make us the fun-loving, adorable, not so bad to deal with kid sister of the UN. We accept many people. Sure we have a ways to go, but for the most part- watching people go under the knife for looks (plastic surgery), weight loss (lipo/gastric bypass), or limb lengthening is something that strikes us as odd- regardless of the outcome. It’s something many of us joke about… sure we want to look more defined, thinner and taller, but we love ourselves too. Somewhere deep inside… and usually others love us, as well. Accepting our family members, be they big, small, fat, thin, Republican, Democrat or fence sitters Independents makes us human. American human. It’s not luck, it’s love.

Be what it may to you, we are lucky to have such diversity in our community- that’s for sure. I open this up for FRIENDLY debate and discussion, and ask that the comments remain impersonal and general. This is NOT a place of judgement- NO ONE is wrong in their personal thoughts about limb lengthening. If you want more information, please search for it… there are a lot of happy and healthy people out there (and limb lengthening as a whole is used for a number of differences, not related to dwarfism, with great success). If undergoing ELL is something you are interested in for yourself or someone you care about- please seek treatment from a KNOWN facility.

Thank you for reading.

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Filed under Achondroplasia, Community, Educate/Adovocate/Make Change, Parenting/Family/Lifestyle

So you think you can hurt me?

So You think you can hurt me? You email me links to awful t-shirts. They say things like I <3 Midget Porn. Pet Midgets are Awesome, depicting an LP on a leash. The evolution cycle, with the last man as an LP.

These images are saved directly from cafepress.com

These images are saved directly from cafepress.com

Guess what? I wasn’t hurt.

I was shocked by the ignorance. I wish I thought You sent me this to alert me and not to hurt me… but soon after You sent the email, You deactivated the account You sent the email from and Facebook tells me they cannot give me any further information. I wish they would so I could thank You.

Thank you, You, for being so cruel that You showed me how funny these t-shirt and onesie designs were to You. Because of You, their evolution is on their way to extinction (see what I did there?). Sure, hatred similar to this will always be around- and I will, again, rely on people with your high level of compassion ignorance to share them with me. To try and hurt me and to illustrate that You do not think my daughter is human. I will wait for You to email me again and show me where my efforts are most needed. And I will, in turn, respond to the uneducated, the haters and the people who are simply mean.

I posted a link on A is For Adelaide’s Facebook page with the link that was sent to me, and one on my personal page. Within minutes there were comments, shares and the community that welcomed us, answered all of our questions and has been a rock amidst the waves of uncertainty since Addie’s diagnosis, were quick to action. Information regarding Cafepress.com, the company allowing the production of these shirts, was up on all of our POLP (parents of little people) and dwarfism awareness sites. Petitions. Letters. Emails. Phone calls. I’m sure some people were upset, but for the most part all inquiries into the 50+ pages of “midget…” attire were a calm request: please, take it down.

We don’t want our children to see this. Our spouses, cousins, friends, extended family. We don’t want to have to explain to our babies, looking into their eyes, shining with all the hope for the future, and innocence a child possesses and explain: people with dwarfism are not always seen as equals. It’s not just because you’re different, it is how you’re different. It is the visibility, rarity and vulnerability of your difference that some will not see you as human, but an object.

I know we can’t save the world, but companies like Cafepress, eBay, Zazzle, even Etsy are selling items that are degrading and humiliating- they all have rules about what can and cannot be posted. There are rules as to what is more than just unsavory and borders on cruel, hate and prejudice… yet designs that portray little people as objects, pets, or promote tossing or leashing and slavery (owning a human as a pet) is not considered as such? Cafepress has 54 pages of “midget” gear. While I respect car racing and do not want to upset the community, I went through all of the pages and the items referring to cars were enough to take up just three. That being said, things on Etsy are just strange. Pictures of LP as entertainers- sure, a collectors item, but then one of just a man with a cigar. THIS is something to sell? I will start selling pictures of my friends smoking cigarettes. Are they not intriguing enough?

Perhaps this is a challenge. Maybe You are out there reading this and looking for worse things that will break my heart. Whatever the outcome, I will continue to advocate, educate and bring awareness to dwarfism and the inhumane treatment of other humans that still goes on in the world United States today.

So far, one image has been removed from cafepress. One product gone. We are making changes. The community and beyond. Friends, family, people who are directly related to dwarfism and others who just saw these images and were appalled. We are making the world a better place for our babies. Come back tomorrow and read about another amazing change that a family in Pennsylvania made just this year! And, until then, join us with THIS petition. Share and educate. I will, as I’ve said in the past, remain true to my goal to be proactive and educate.

Thank you for your kindness.

Below is what I sent to cafepress:

I know you have been bombarded this past day with emails and calls regarding midget attire.

This happened because someone emailed a link to me with one of your tshirts. I have a daughter with dwarfism and I am a blogger. I posted the link sent to me on my Facebook page. Previous actions to incite change have made me a target. Months ago I made a video and wrote an email to a pickle company asking them to change the name of their product from midget to something (anything) else. The story was picked up by the news. People were supportive and thankful. Other people were mean, hurtful, threatening. Someone sent me a letter in the mail, and the hundreds of thankful emails were met with almost as many hatred. People saying some of the ugliest and most verbally aggressive things I’ve ever heard in my life (and I’m a Philly girl!).

People are still sending hateful things to me. A link to a shirt being one. I wish I would just shut my mouth, but I cannot. I cannot know that a company sells tshirts that promote laughter at the idea that tossing or owning another person, for any reason, is OK.

I just cannot.

I appreciate that you have removed one of the items. I appreciate freedom of speech. But this is not freedom, this is oppression. This is a hate crime slathered on t-shirts and onesies- clothing made for babies and toddlers.

Please, consider extending your removal to all clothing that pertains to hatred and prejudice. The word midget is referred to as the m-word, and just as the n-word is not spoken, written or mentioned via innuendo, I ask you to help end the casual use of this word for the promotion of love and a brighter future for all of our children and future world leaders.

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Marvelous Monday!!!

Could this weekend have been anymore perfect in ‘Lil Rhody? It was beautiful in the Ocean State- I hope it was where you are, too!

This week I am SO thankful for resilience. I have been blessed to have two of the most resilient people living under the same roof as me! Miss Adelaide had her one year check up Thursday afternoon, and with 3 shots and a finger prick (lead and iron), she was happy as a clam (are clams really that happy?). After coming home from the appointment, she took a brief nap, ate a hearty lunch and came to the Local Author Night at Barnes & Noble in Warwick!

With author Jackie Hennessey

With author Jackie Hennessey

Days later, we are still fever free and happy as ever… who could be sad with an awesome play set Grandpa put together??

LittleTikesPlayset

And then there is Dave. A little back story: Dave was NOT a morning person when we first started dating. He was often at his shop at 12:04pm everyday, which opened at 12:00pm. But, somehow about 6 months before we were married, Dave started to make me a hot breakfast every day before work. Sometimes this meant him getting up at 6:30am to cook… then we got a puppy and I started running at 5am- yet, Dave still got up and figured out the time to have coffee and breakfast ready for me. This isn’t about breakfast, in fact, there is a big change coming in our life that makes breakfast look a bit less important than my daily coffee requirement (not a baby), but his sacrifices have afforded us much in life- whether it’s a few hours of sleep, letting go of old dreams or selling his most prized instruments- I’m blessed to have such a man.

Mountain Man <3

Resilient and resourceful <3

When it comes to dwarfism I certainly explain what I can, but recently it’s come to light that people have a need to know what to call Addie. Here is my definitive answer: Addie. It’s not rocket science, it’s just her name. While I appreciate so many friends, acquaintances and strangers wanting to be “PC” (hey, I’m the CPL!), there is no need to describe her as a Little Person. She has a form of dwarfism, but she also has a beaming smile, a head full of strawberry blonde hair, a million teeth coming in all at once, the sweetest little voice, dance moves that would shame those on DWTS, and a love of hugs unseen before. While I will focus on dwarfism awareness, please know that there is not one person out there with dwarfism who should ever be defined by their genetic difference. Little People does not describe intelligence, emotion, desire or ability. LP can run triathlons, be doctors or school teachers. You see, Little People are just people. Until you describe me as your tattooed, new mom, ice hockey and football fan, half Catholic half Jewish, blue-eyed, 5’8, size 8 1/2 shoe wearing friend with brown hair who drives a Ford, you can just call Addie Addie.

Lastly… my random of the week: Mapmyrun app. While I usually use the MapMyRun website, I found that logging in the app and tracking my run (instead of remembering where I went and when I left and when I returned, etc.) as I was doing it gave me more accurate results, I was able to see a map of where I was, which prevented me from getting lost at Roger Williams Park, and it was EASY! It’s the overrun runner’s app! I still have my daily runs that I know in my sleep (and I time with my Garmin), but when I go off my beaten path, it’s nice to know that I can map it easily and not have to question where I am! :)

Have a beautiful week, Reader!

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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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Filed under Achondroplasia, Educate/Adovocate/Make Change

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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Filed under Achondroplasia, Community, Educate/Adovocate/Make Change, Parenting/Family/Lifestyle

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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Filed under Achondroplasia, Community, Educate/Adovocate/Make Change, Milestones, Parenting/Family/Lifestyle