Tag Archives: short stature

Survival of the Fittest

#aisforadelaide Survival of the Fittest #dwarfism #achondroplasia

Photo by Lisa Gendron, Agroterra Photography

There are some things that just boil the blood. For the most part, while I don’t agree with “teaching thick skin” to my kids, I do force myself to toughen up. But… there’s always a but.

If anyone who reads this blog thinks that Survival of the Fittest is something that doesn’t apply to my child, that her medical treatment isn’t something that should be covered, I have a few concerns about your fitness level. I question your ability to survive. I wonder, if the application of survival of the fittest should apply, why are you not dead?

From behind the “safety” of your IP address (guess what, that’s NOT hiding your identity), you’ve sent emails about how my insurance should continue to fight me because if my child was not different (I will never repeat your words), she wouldn’t be a financial burden to the insurance system. How I put her through life. A barrage of your friends agree with you- that’s why you feel you can write to me in such a manner. So I ask you a few questions.

How many people from behind their LCD screens, reading these very words just took a medication? Something as innocent as Tylenol or ED meds (which can be a sign of needing to see a cardiologist). Maybe something serious like blood thinners or insulin? Have you needed a blood transfusion? Ever had pneumonia? Have you broken a bone? Did you know you could die from an infection if a broken bone is left untreated? Now, how many of you also have children that are not fit enough to survive?

Survival of the fittest is not about surviving because you’re the fittest, it’s surviving all of the things that come your way. They are what make you “fit”. Fit to survive.

The 7,000+ members of the LPA who strive for awareness. Those people who have gone through and the parents who continue to push through surgeries, while groups band together for support and love- an outpouring of strangers who become family. I don’t think my daughter is amazing because she has a form of dwarfism. I think she is amazing because she’s taught me more about humility and humanity. And humanity is kindness. And those who are kind, survive.

Kindness is to love, but not blindly. To lead, but know how to follow. To not fear the unknown, but those who do not seek to know. The strong, but not the tyrannical.

Survival of the fittest… those who surround themselves with who and what they need. Who will support them and who they support in return (support does not mean agree with). Who adapt society to them, adapt themselves when they can’t, and create change to improve the world. Yes. The world. Those who survive, are the kind.

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Filed under Achondroplasia, Community, Educate/Adovocate/Make Change

Listen to Your Mother… that’s me!

I am still full of awe and honor to have been a part of the 2014 Providence Cast of Listen to Your Mother….

Listen to Your Mother Providence Cast 2014 #aisforadelaide

(My intro written by the talented Carla Molina at All of Me Now):
Chelley Martinka is a Philly native with a little thing for Game of Thrones. A closet drummer, she’s a mom to one awesome kid living with dwarfism and is expecting her second daughter this fall. Chelley is up next with “Do It Ugly.”

Do it Ugly

Everyday, when I look at my planner, I see this quote, Dream so big you’ll look like an idiot if God doesn’t step in!

It’s a reminder to do it ugly. To get in in past my ankles, waist deep. To get dirty, cut- go full throttle.

Growing up, I was loud. I would sneak out. I smoked cigarettes and overly enjoyed cheap beer. I played a lot of sports and I was rough when I did it. I got injured. I suffered from depression. I liked a good party. I liked to study so much I graduated college with a 3.5 in 3 years with almost no friends. I got tattooed. And then got some more. I got dermal anchors before they were a trend. I dated. I over committed to people that needed “saving” and after they were saved, I moved on. I broke hearts. I uprooted myself a lot, took on a lot of jobs, was reckless with my emotions and other people’s hearts.

Doing it ugly was more about how low I could go. How many problems I could fix of someone else’s while ignoring my own needs- uselessly helping others chase their desires. I knew I’d never stick around long enough to see the ending. Like the friend who needed money for car payments… a loan I would never see the repayment of- I worked weeks of overtime. I’m not quite sure why, except it seemed like the right thing to do. I was a wild one with a sucker-streak- looking to take care of all the people surrounding me, and sleeping as little as possible while doing so.

But then it happened. I was approached by a lion tamer with the patience of a kindergarten teacher and heart of a saint. Some have come to call him Dave. So here I was married. A wife. Together we ripped apart the money pit and created a home. We both worked long ours and enjoyed uneventful hikes with our dog and nights by the firepit with friends.

Gone was the Chelley of the past, replaced with this woman who quit smoking, ran half marathons, was letting someone else take care of her once in a while, learned to enjoy wine over whiskey and, for whom staying up late lost its once alluring appeal. Who the hell was I, now?

Not looking for redefinition, she came- The reason I had to get all riled up again. My reason for getting my hands dirty- I was ready for parenting. Here I was, rolling up my sleeves and spending late hours burning the midnight oil- literally- we have oil heat. But I was more than prepared, I’d been practicing to parent this special lady since my days as a rebellious teen.

I knew everything I did from the moment I heard her cry would be things she would be proud of. My perseverance would be her life lesson. I would work hard, and when she was diagnosed with a high-functioning disability, I knew I would dig harder than I’d ever imagined. With letters, videos and a blog, I would educate about our life as a family. I’d take attacks and hard words and fight to change the stigma. I’d create a team consisting of specialists in Massachusetts, Delaware and Rhode Island. I don’t know the answer to that, would be an answer I’d never settle with.

I would allow no one thing would define my sweet girl, a lesson I’d learned from my own mother. Dwarfism, gender, religion or a favorite band would simply be aspects.

I would raise her to be generous, dignified and tough. A woman who could do whatever she pleased, in jeans or a skirt, at a bar watching the game or in the courtroom arguing her case. With my biggest dream being a world that truly sees no difference between my Adelaide and any other human. Recognizing her disability as something about her, not something that defines her.

I spent two days bringing her into the world… and I will give my life to give her dreams so big that she never knows what the ground looks like with her eyes closed.

And while most of my days are beautiful- I work hard to make sure they are. Everything in life that feels like it’s too much is all the more reason to get in there. To do it ugly. Everyday isn’t a fight, but when it is, I make sure it’s worth it, to go hard.

This life is my one shot to make it what I want and give that power to my future warrior woman- and no one will lessen my gusto or dampen my dreams- not even God, herself.

Listen to the cast:

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Filed under Educate/Adovocate/Make Change

Marvelous Monday

“How many times has this happened?” She asked me to repeat the number.

“Six. But only 4 times this year.” It was May. I knew our batting average was not good on this one.

“I’m going to refer you to a neurologist just to get her take. Other than that, she’s perfect- don’t you worry.

Marvelous Monday Decompression Surgery #aisforadelaide

I’d heard that before. When Addie was a newborn, I was told not to worry. A lot of kids have big heads, but they just wanted to be sure. I’d pushed to know more and at 9 1/2 weeks she was diagnosed with achondroplasia. And here we were. I’d pushed it. I’d asked if these blackouts were normal. She’d hit her head. No breathing, loss of color, completely limp, eyes rolling. 10 seconds with a lifeless body that would spring back the with force of the Devil inside, screaming. Followed by a headache, but other than that, back to herself. Six. Times.

“So she hits her head, cries, then stops and passes out? Sounds like she’s holding her breath.”

“No,” I responded. “She hits her head and nothing. I pick her up, trying to stop her fall from the beginning and nothing. She is lifeless. Then she comes to. She doesn’t cry first. She’s not holding her breath.”

“I see.” I see, too. Her hands furiously typing into the tiny laptops that the hospital just implemented in their paperless plan. She’s slamming at the keys, catching each word.

“Does she  ever get headaches?”

“Yes, but they’re weather related, my husband and I get them too. She has them a few times a month.”

“So you all get headaches at the same time?”

I paused. I felt hot and upset. “No, we don’t.” I’m wracking my brain. Dave and I get them on the same mornings, but not always Addie. Some days she just rolls around holding her head, and some nights she’s done this. “But it’s not all the time,” I’m sputtering. I want to take it back. How did I miss this?

We talked for a while longer. We did a neuro workup… a few times. Then, “I’d like to order an MRI to check it all out if that’s OK with you, mom.”

I left with papers and numbers and numbness. From the first hours I spent reading about achondroplasia, I feared decompression surgery. The recovery, pain, spinal cord, scarring. Everything about decompression scared me.

The MRI was done, and that was that. I was sure she was fine. My achon baby who walked at 16 months, spoke in full sentences, showed no significant apnea after age 1… she didn’t have classic signs of compression in her spine. She was fine.

She was fine.

I got a call the very next day from a doctor. The neurologist didn’t like the MRI, the neurosurgeon didn’t like the MRI. The story, the images. They were not great news. “Give her office a call. They will get you an appointment soon.” The appointment they  gave me was nearly immediate.

We discussed surgery, but nothing was in stone. I wasn’t convinced. I wanted more opinions and I would get them in San Diego from our specialists- but after the images and story, the answer was still clear as mud. Sure she falls a lot- all kids do. The blackouts may not be from compression. Her images are not indicative of surgery. Our doctors could go 50/50 on the surgery. I felt lost, but with an order for more images. They would tell us something. They must.

So last Wednesday we headed to Boston. Hungry and hot, Addie was ready for whatever was in store so long as she got to eat at some point. By 3pm they finally took her back- she was so loopy from the meds that she could hardly whimper when I handed her to the anesthesiologist, but I was still torn apart. We met back up in recovery, where Addie was still asleep. There was a laundry list of medications, and my usual lion woke up rather calm (read: drugged) from the anesthesia with her usual intubation-throat, looking for snuggles. At last, we were in the car and headed home.

By midnight we were mostly asleep, but not ready for the next day.

We walked into the APC building at Rhode Island Hospital- full of angst and armed with her MRI from the day before. We talked again. I mentioned her falls seemed to be from slow feet. Her waking in the night. Her headaches that still happen, but not often. We talked about how she hangs her hands funny sometimes, but she seems strong. There haven’t been any blackouts since April- she hasn’t gone backwards since then. Then there was a neuro workup.

At first, I thought it was my mind playing tricks, but as the specialist hit her heel, I saw her foot jerk. The fluid motion I was looking for, the common reaction of a reflex was replaced with this ugly movement. Taking her foot in her hands, she pressed up, let go and checked with the hammer again. “Clonus.” I said. She looked at me with sad eyes, knowing eyes. She recognized defeat in my voice. I had nothing left to fight about. Clonus is a sign of neurological hindrance (a continuous rhythmic reflex tremor initiated by the spinal cord below an area of spinal cord injury, set in motion by reflex testing). Catching it and treating the compression would be key in keeping Addie healthy. She could eventually stop walking and suffer from severe spinal damage without it. Decompression was the way to go. I had my answer.

All I could think was fucking clonus.

The neurosurgeon came in. More people checked. Sure enough. What wasn’t there just a few weeks ago was emerging. You can’t make this stuff up. I was near speechless.

I’d wanted an answer. I said I did, at least. I wanted a yes or no, and I was looking for reasons. There it was. Coming in little jerky, hesitant motions. I signed the paperwork for her surgery (which is happening tomorrow) and we headed to the lab.

“Her veins roll away,” I said. “They look closer to the surface than they are. Seriously- they will try to escape. They’re hard to get on her.”

“We do this a lot,” she said back with a polite smile. No one likes to be told how to do their job, but to be fair, I warned her and I know my child.

They pulled the needle out 3 times, and moved it around in her small arm a dozen times. “I got it,” a phlebotomist beamed. The second one who’d tried. I was annoyed, I was crying. I’d told Addie that this day wouldn’t hurt. We were just going to talk to the doctor. But here she was screaming from her back, “No mama. I want uppahs. Please pick me uppahs. You said. You said. It hurts.” I tried to take it on, “I’m so sorry, bug. I’m so sorry I lied.”

“YOU LIED.” She screamed. It came in a spit. A slap in my face. She was covered in snot, and red-faced. The fear spilling from the corners of her eyes. I started to heave into her neck. She suddenly stopped crying and began to stroke my face. “Don’t be sad, mama. It’s ok. You ok, mama.” I stopped my tears. This was her moment. She began to whimper again into my chest. They taped the gauze on and she practically leapt into my arms.

We got home and she fell right to sleep. She napped. I made lunch and I started some laundry. I called Dave to tell him everything and I answered all of his questions. I joked on the phone with my mom about attempting to get a urine sample from a 2 year old. I sat down to work. And then it hit me. I started to panic. I lost my breath. The scar. It would be on her neck forever. I didn’t want her to have that scar.

It’s not the aesthetic I worry about. It’s her sweet neck. Where I nuzzle. Where I pull her hair up and the most graceful neck appears, balancing her head gently upon her shoulders. Long and lean. Untouched. Beautiful. There will be a scar in that place, to constantly remind me: I couldn’t fix this. I’m her mother, and I could do nothing but hand her over to a team of specialists.

As I came out of my panic, I decided I needed to put time aside. This week, as much as I want to write because I love to write, I will not. Of course I have work to do, but who I am means more. And who I am is a mother, a wife. I need to support my family this week and appreciate all of your love and concern as we regroup and work through this. As Addie goes through decompression surgery, we too must decompress.

Spinal Decompression HOlding Hands #aisforadelaide

I’ve spent weeks in denial- maybe months. I ignored a lot of things, never mentioning them except to friends because it was just Addie being Addie. Headaches I kept calling seasonal. Falling that looks like she was dizzy. Holding her hands in a funny way some times- almost floppy. Blacking out entirely when she hits the back of her head. Holding her neck. Screaming at night (which is pretty new). Gasping for air in the night, but not related to apnea (still sort of a mystery and hoping surgery helps). And now, clonus. I’ve denied it all too long, and I could not be more thankful to the multiple doctors who pried and asked more questions, forcing these things out of me. Showing me that decompression, though scary, is truly the direction we’ve been headed. Her strength, both physical and mental is sure to be tested, but our girl will be strong. My warrior.

Addie will be at Hasbro Children’s Hospital from Tuesday to possibly Friday (hoping for discharge before the weekend and maybe earlier), and I will be by her side the whole time. Her recovery means more to us than anything now, and while I can’t wait to be back (I love to write and share!), I have to take this time for family.

Have a beautiful week, reader. Talk soon,

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

Marvelous Monday

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

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

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

#Aisforadelaide #lpaSD2014 #family #friends #dwarfism

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

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

#aisforadelaide #lpaSD2014 #expo #travel #sandiego

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

#aisforadelaide #lpasd2014 #family #vacation #travel

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

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

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

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

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

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Filed under Community, Marvelous Monday, Travel

Marvelous Monday

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

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

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

#aisforadelaide #marvelousmonday #lpaSD2014

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

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

Happy Marvelous Monday, Reader!

love,

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Filed under Community, Marvelous Monday

…and this is why. *trigger*

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

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

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

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

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

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

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

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


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

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

Every Six Months…

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

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

A new lesson in life.

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

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

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

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

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

#aisforadelaide #babyyoga

#aisforadelaide #yoga #downwardfacingdog

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

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

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

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

#aisforadelaide #siblingday2014

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Filed under Achondroplasia

Filled with Thanks

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Leave a Trail of Genius

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

If you do nothing else in life:
notepad

 

“Leave a Trail of Genius”

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

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

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

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

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

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

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

 

References

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

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

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

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

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

 

5 Comments

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

You Educated Yourself AND Won $25!

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

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

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

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

A few things to remember:

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

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

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Filed under Achondroplasia, Educate/Adovocate/Make Change