Tag Archives: LP

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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Adelaide has achondroplasia

Adelaide was born after a lengthy labor on April 17, 2012. She was perfect. Beaming up through eyes that spoke of wonder. We swaddled her and held on for hours. It felt like we could not sleep. She was too much to let go of- her small body (18″) was a ball of cuddles that we’d waited almost 39 weeks to hold.

As the weeks passed, I noticed she didn’t look like the other babies in my new moms group. She was… rounder. She was happy, and a great sleeper, but she wasn’t the same as the other babies and I couldn’t put my finger on it. Each morning as I dressed her, I saw that her clothes fit oddly, and her head struggled to fit in her onesies.

Her head is big, I remember saying to her pediatrician’s nurse as she took measurements at her two month appointment. Addie was 9 weeks… and the ball had suddenly been put in motion.

When the doctor came into the room to examine Addie, she took two looks at the measurements and whipped out her own tape measure. She looked Addie over, asked me some questions, and cooed at her tiny patient.

What was happening? I wasn’t sure. But my stomach was in my throat,

You’re right, she confirmed about Addie’s head. It was bigger, but she was also measuring a bit small. To be safe, the pediatrician ordered an ultrasound of her head and x-rays of Addie’s long bones (arms and legs) to make sure everything was working as they should be, to be performed the following Monday, but we didn’t make it that far. A few hot days later with a lethargic infant and incessant fever, Addie was admitted to our local children’s hospital. An emergency CT of her head was performed to make sure there was no abnormal fluid in her head- this called for multiple spinal taps to be attempted unsuccessfully (and without anesthesia of any kind) to check for meningitis. Due to her high level of dehydration, the tests were lacking enough fluid, and we were left to give her broad spectrum antibiotics.

Panicked, I called my mom (250 miles away) who hopped in her car and started the drive up.

Because the tests were already on the table, while admitted, Addie got her x-rays and ultrasound done. After hearing that her head and brain were fine and there were no signs of hydrocephalus, we were wheeled back to her room to wait. I tried to sleep, to read, to do something, but I was stuck in a whirlwind of what-ifs.

I’d read it all… so when a woman came in who introduced herself as a geneticist, I knew we were looking at something serious. I listened to her introduce herself and say that she just wanted to stop by and check in on us. She was asked to look at Addie’s x-rays… I stopped listening, but then  she stood up, shook our hands and left.

Photo: Dimery Photography

Photo: Dimery Photography

I tried to nurse Addie, who was still having trouble eating, so I resorted to the pump. As I stood at the hospital room sink, burning my hands in the water, I looked up in the mirror to see the geneticist walk back in. I stayed there, forgoing the pain of the water for a minute. The look on her face was a nervous smile, not that of a confident woman. I sat down. I was prepared… but numb. The woman in front of me talked about the x-rays, the best doctors in Rhode Island, thorough examination…

Adelaide has Achondroplasia.

My husband asked what that was, but before he could finish his questions, I blankly said dwarfism.

I cried. A lot. I didn’t know enough about what was happening. Was this why she was sick? Would she be ok?

As it turned out, her dehydration was unrelated. She wasn’t great at latching, the summer was hot, and she had spiked a fever. That was why she was sick. Dwarfism was not an issue here.

In fact, here we are 2 years later, and dwarfism isn’t an issue anywhere. Some things are different- that’s for sure. Addie is a pro at staying still for x-rays, falling asleep with things attached to her head and body (sleep study), she can travel hundreds of miles by car without much issue to get to and from her geneticist in Delaware, and she’s encouraged to climb objects to get what she needs (where as other kids are told not to!).

When I think back to those days in the hospital, the fear and the unknowns, they scare me- how could I know so little about my own child? But they also serve as a reminder that what is different is not bad- difference is something to be celebrated and advocated. Our lives are different from most, of course… but it’s an amazing life. And that’s what means the most.

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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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It’s About Passion

As many know, our family has a yearly membership to the LPA (wouldn’t a lifetime membership be awesome?!). Because of this all-encompassing community of people with all types of dwarfism, I’ve come to meet and know more people and more diagnoses than I would have imagined existed… but it’s the people we meet that leave the most lasting impression.

Like many parents, I have dreams for my sweet Addie, and because of my own dance past, one of those fantasies is for her to be a dancer, too! If you follow me on Instagram (HERE), you have seen all of her pictures, like this gorgeous shot, captured by my friend Sarah over at Sweet Lil’ You.

#aisforadelaide Dance Class

Or this new favorite… I like to call it: Sassy Sashay

#aisforadelaide sassy Sashay

We have enjoyed dance so much, that when a friend in our LPA district (New England District 1), Alex, won a scholarship for her dance, I leapt up from my chair and cheered at my computer screen! Her mom tells a beautiful story about Alex and her journey of dance below… check it out!

Alexandra has been dancing since she was 3 1/2. She has a love and passion for dance, and even though she is small she has excelled at it. She was invited to the competitive team when she was only 7 years old! She has now been dancing for 8 years, and has been competing for 4 years.

She recently attended a weekend dance convention in NYC. During the weekend there were multiple classes taught by professional choreographers, with almost 1000 girls from all over the country, trying to win a scholarship. Alex was chosen as a Stand Out Performer by professional choreographer, Al Blackstone, to receive a scholarship during his musical theater class. She was the only LP at this event and half the size of the girls in her group, yet she succeeded in making a lasting impression.

She received a $250.00 scholarship towards a week-long summer intensive program from July 22-27 in Long Beach, CA. They recently built a new facility there where 5 summer workshops will be held, in one location, giving the dancers an opportunity to learn even more. The normal cost of the program is $600.00 plus the cost to fly to California, hotel, car rental and food, it is all adding up at an astronomical rate.

I created the GoFundMe as a way to collect donation to give Alex this once in a life time opportunity.

#aisforadelaide #dance #passion

Amazing! A scholarship to a dance workshop!!!! Yes, please! Check out Alex’s GoFundMe page HERE, and share it often! Let’s send her to Cali to chase her passion with pointed toes and poised hands!

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Marvelous Monday

And, we’re back! I hope all enjoyed the superb owl… I was cheering for the Eagles (ha… birds… get it? No? Ok… I’m done being punny). So, after a beautiful week last week and a ridiculously warm weekend, I’m preparing for Punxsutawney Phil’s prediction of 6 more weeks of winter and we are having the oil tank topped off today. Hooray?

This week I am thankful for the blessing of staying home and blogging- for the ability to work at getting my writing career off the ground and spending so much time watching Addie grow. I love that she is so independent, but I also love that I’ve fostered that. I’m there to see it. Most of all,  I love that my readers see that, too.

A few emails come in each month from new parents, or parents-t0-be, of children with dwarfism. Some have a million questions, some have fears, many just want to say thanks. For that I say, THANK YOU!

I love that so many read this blog- for information, for silly stories, recipes, giveaways (like THIS one or THIS one), for charts, to educate… just because you stumbled in here… I love each one of my readers. Truly. But more than anything, I love that so many know that I am here for them. So many moms, dads, grandparents, teens, family members, and friends have clicked the contact form and emailed me. Whether it is just a simple hello, or if you have  laundry list of what-if’s and how-will-I-knows. I am here. I always will be.

From the moment I sat on the hospital bed, watching the littlest wonder finally resting, hooked into a handful of IVs and monitors and heard achondroplasia, I knew we had one of the most beautiful, albeit different, journeys ahead of us as parents. If you need to reach out, do. I have the opportunity to help you, and am so thankful that I do.

*  *  *

And… some info for parents looking for help: The Shriners! This is not just for dwarfism needs, but I just learned about the Shriners and how they help families who may need medical assistance, specialists and equipment! Yes, equipment.

We have recently run into a few issues with climbing, safety and the like with Addie and spoke to our Early Intervention PT about this… but because our health insurance can be a bit finicky about crucial things like sleep studies, we both knew they would not be forth coming with things like chairs, or other home care items. With this in mind, we were directed to our local Shriners Charity Trust and have an application in! We are very excited to have some assistance with keeping our crawling, climbing, jumping, hanging lady safe- without the muscle tone, coupled with her determination, I fear (more) head falls in the future!

For more information, contact your Early Intervention office or local Shriners (Google search!) for more information and an application to apply. Specialists are also in their realm of assistance- some of the best in the country! I hope this helps families looking for another option to care for their child- let me know if you need help finding out more!

*  *  *

And I know you’re looking for some random, so why not give you some? Take this as you will. For me I mean it for my Life, but some days I have to say this by the hour. Just this second, just this minute, just this hour, just this day, just this week, just this month, just this year. Just this life. Do with it what you will, but remember:

This is it #aisforadelaideblog

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Christmas List Ideas For the Littlest of LP

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Marvelous Monday, Indeed!

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I’m leaning towards…

In this 4th installment (of 10) regarding the LPA National Convention we attended this summer in DC, I am writing about 504′s (vs. IEP), and why I think it will be enough for us.

A 504 is part of the Vocational Rehabilitation Act of 1973, and prevents discrimination against individuals with disabilities from any institution that receives federal funding. In our case, this would be schools. Children considered for a 504 are often not eligible for many accommodations regarding emotional and cognitive considerations, but have a condition that may affect their ability to function in school- physically. This is in comparison with an IEP , which is an Individual Education Plan, and goes beyond what children need physically. Many times, these services include occupational therapy (OT) and speech, as well as reading, further assistance in learning techniques, etc. There is a lot of testing before this document is created, and it is legally binding. An IEP can follow you wherever you go, and act as the plan for your child’s needs.

For us, I think the 504 plan is enough. Addie’s cognitive skills are at or above her age range, and her ability to push through a crowd is uncanny (is she living through me and my punk rock years?). However, things that can be addressed in the 504 are much needed and will make Addie’s life easier and safer when she is enrolled in school. An IEP can also address these issues in the “Accommodations and Modifications” portion, and thus you don’t need a 504 with one. However, if there are no cognitive issues or further therapies needed in school, perhaps the way to go is to just research all adaptations needed and have them all in a 504 that you discuss with your chosen school well in advance of your child’s start… there are always things that need modification to their modifications!

For a 504, you will have to talk to your school the year before your child attends. Because there is no extra funding for 504 plans, you might have to be a bit of a squeaky wheel… a well-liked squeaky wheel, at that! Keeping that in mind, if you have any tools that would be helpful (hooks, stools, screws, plans, etc.) in aiding any modifications, they will most likely be much appreciated.

… I think my point may be understood. With an LD (learning disability), you are certainly eligible for an IEP, but with Addie’s current track, we are more worried about her physical limitations. For us these are inclusive of everyday things, but also, the things I hope I never have to know, like in a fire, are all doors able to open for her?

Considerations for your child should be made with them. Visiting the school with your child and a tape measure will better arm you, as a parent or caretaker, to know what is needed or lacking. The process can take a while, and to be inclusive, your child, yourself, teachers, other staff, the principal, counselors, therapists, service providers and (if available) the director of special education should all participate.

There is so much to think about, and it call all be overwhelming, so I will leave you with this…

Consider:

  • Walking, or riding in the car?
  • Procedure for riding the bus, not just to go to school but for field trips- is there a booster, car seat? Are there belts at all? An aide?
  •  Is the parking lot easy to cross? Are there blind spots?
  • Are all walkways paved?
  • Are doors accessible with handicapped buttons at a reachable level?- all doors need to open easily for your child, especially in an emergency.
  • Are there lower lockers or cubbies?
  • Is the playground safe? Are there people to monitor climbing and falls?
  •  Is there a stool or chair for your child’s feet so they aren’t hanging in the air? Being comfortable is important to learning, and the health of your child’s hips, back, knees, etc. Check out the Tripp Trapp Chair!
  • Are classroom materials within reach?
  • Is gym class safe and is your child being included?
  • Are all bathrooms accessible- doors, toilets, sinks, soap dispensers (NOT just hand sanitizer), paper towels, lights, mirrors, sinks, faucets?
  • Is the water fountain accessible?
  • Can your child reach the cafeteria line? Trays? Food bar? Utensils, napkins, condiments? Are they comfortable at their lunch table?
  • Safety drills… are they safe for your child?
  • Is there a school nurse there at all times? What times is s/he there?
  • Does your child need more time to get to and from class?
  • Can your child carry the required texts through the halls? Can there be a home set and school set of texts?
  • Lastly: Was your child involved in this planning?

There are so many things to think about, it is hard as an AH parent to think of all the things our child would need. And an LP parent may forget those schooling days and what was hardest for them. When choosing your plan, and executing its initiation, know that things will always need revision and compromises will need to be made. Sure, compromising safety isn’t in the equation, but perhaps donating some of your own items will help make your child’s learning experience all they deserve.

With just a few years before Addie heads out the door and into the capable hands of our public school system, my mind is firing away at all the holes that will need filling upon (and before) her arrival. I am so thankful that I was able to attend the workshop that described all of the necessary items to me and taught me how to make her educational experience both comfortable for her, and retain my sanity (aka Addie’s safety).

Please- share your experiences!

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

Marvelous Monday!

There are lots of awesome things that happen on the weekends. I had forgotten this fact due to Dave’s ridiculous habit over the past 5 years of working 7 days a week (he’s amazing like that), but in the past few weeks we’ve had adventures, late mornings, and lots of time to watch Addie learn right before our eyes- an experience Dave has seldom experienced before. It’s been awesome… and this week, I am thankful that some things in life fall into place- most of the time- unexpectedly.

When B Sharp closed, I felt very sad. It was the end of an era, the end of all Dave had worked for during the past decade, and all I’d known him as… but there were other goals in his mind. To raise Addie with me, to stand by my side at weekend birthday parties, summer BBQs, fireside toasts and experience morning snuggles wrapped in the warmth of our sweet lady while the snow falls outside. Goals I didn’t know existed. When the end came, I was sure nothing good would follow, but more family time has emerged. The bills we were paying in larger amounts are still being paid, but more than that, time is being paid. Time for him, for her, for us.

I read that sometimes good things end so better things can begin. Yeah, I thought. That is so true.

*  *  *

This weekend, in fact, was so kick-butt, that my dwarfism and random are all mixed into one jumble… read on!

John Young came to stay with us this weekend. We’ve never met in person, but when I was well known as CPL, John called me and talked to me for about 45 minutes. He kept me level-headed and shared personal stories with me that meant a lot to my sanity and my advocacy goals. He helped shape the way I choose to present myself, and thus lead Addie. When he first asked me about places to stay in Providence, I said “here!” And so it was!

This weekend for the Rock n Roll Half Marathon, John stayed in our guest room (with Morgan, our cat). Not only is he an awesome runner and athlete (yeah, Iron Man Tri!!!!), but he is one of the nicest people I’ve ever met! Addie, even in her teething pain, become a fan of John’s!

John Young and Addie

On race morning, John was out of the house before Morgan could yowl at him to wake up. I was impressed. And groggy. When we finally got up at 7, I knew the race was already going. We ate, dressed and hopped into the cold morning air for our short drive to Providence. We found really close parking and a spot near the end of the race (right before the final climb).

Rock n Roll PVD 2013

I had wanted to see John cross the finish, but the crowd was thick and we didn’t want to startle Addie. It was a great spot… and we got to see John as he flew by us to his finish of 2:58 (under his 3:00 goal!)… and a good place for Addie to practice running- and falling.

Head Bump

The bump was all gone before she went to bed!

It’s not because of his stature that I am in awe… it’s because it was something he was told he could not do. Something that wasn’t “good for him”, and a physical barrier so few LP have broken down. Watching him race was a testament to perseverance… not size and defiance. John knew that for his health- to avoid surgery- he would have to make changes. His change included a healthy, active lifestyle. His strength is not one that can be rivaled by many.

So… where does this all bring me?

I’ve missed racing. Not only am I low on training and time, but I don’t have the money I used to have to sign up. In my distress, I have missed out on doing any half marathons this year, but I am pushing my envelope in hopes of keeping my running game through the winter and I am running the Turkey Trot and Downtown Jingle 5ks!

races

I have run a lot of races in the past few years. A. Lot.

running 4 running1

Running 2 running 3 If you have been friends with me in multiple social media outlets, I have asked for donations for Team in Training more than once. While I LOVE TnT and continue to support them (and hope to run Disney!!!!), for these races, I am setting a personal goal of $150 in donations to the LPA (Little People of America). This organization has brought me the tools I need to educate myself and those around me, and raise Addie with love and support- as well as the knowledge to treat her no different. We all need examples of strong leaders- strong female leaders to model to young woman. Strong males to exercise caution and teach respect. And strong persons in all disability groups. The LPA is so diverse and necessary for our community. I urge you to donate to this wonderful organization for the betterment of the LP community. I will be racing in green for my sweet Adelaide. HERE is the link… I will be sharing this often, I hope you can too!

I hope you have a beautiful week, 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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