Tag Archives: dwarfism

May 20, 2013 · 6:49 am

Marvelous Monday!

So, Monday… you’re back. Thankfully, my Friday this past week was pretty awesome as I spent it with my bestie and her baby girl, and NOT getting rear ended on 95 (BONUS!). I hope everyone had a beautiful weekend, car accident free, as well!

This week I am thankful for finishing. I guess this really means I’m thankful for trying, but really… getting to the end was triumphant! Last week, I ran a 5k the day after we were in an accident. It was a bad choice. I cried. My ankle hurt and I had a headache that didn’t go away until Wednesday of this week. But I did it. It was a terrible time (nettime of 34:12) on a course I’d trained for weeks… my hopes of a sub-28 minute 5k were dashed with one “just for a second” glance away from the road.

But, I finished. And I am thankful for that. I am thankful I have “it” in me to keep going.

Cox5k

As someone recently pointed out to me after commenting on Addie being small, well she doesn’t look that different. Maybe they made a mistake. I’m not quite sure who they are, but the blood work from Johns Hopkins was conclusive- Addie has Achondroplasia. This week, my dwarfism fact is that Addie isn’t that different! It seems like I preach weekly about my baby girl being able to do anything she wants and that she is just like everyone else… and finally someone agrees- no matter how inappropriate they make their agreement sound. There are people with forms of dwarfism that just make them short, yet proportionate. Others, like Achondroplasia are disproportionate with short limbs and a larger head, others have short torsos and average limbs, some are still being discovered!

When Addie is next to her peers, sitting on the floor, they are almost the same height. Addie’s torso is [almost] average to her age- she wears a 6 month top. However, when she stands next to most kids in the 11-14 month rage, she is a few inches shorter. There are other differences people have noticed- and seem totally unabashed about telling me about: her neck is short, she has lots of rolls in her skin, her sunglasses don’t stay on (the bridge of her nose is flat), she’s still crawling like that (yep!), she looks like Buddha, her head is huge (so is your mouth!)… it goes on, but please know, these are just features of the type of dwarfism that Addie has.

Truthfully, she might never grow out of some of these things, and others she may. The best part of the whole parenting game? Growing and learning [with your child] everyday! Most things people say, they mean with the same innocuous connotation as “the sky is blue”, so I try to just laugh it off. Most of the time, it’s not worth explaining more to people who misspeak. Addie is beautiful, smart, funny hysterical, loving and, like her mama, flirtatious. Sure, some things are different about her… then again, some things are different about all of us. Thank you to the people who look past everything else, into those blue eyes and see what we, as her parents see: Adelaide.

AddiePlaying

And my random of the week… sometimes you just have to let go! A friend of mine came up from DC- which she does so rarely- and I was all too excited to meet her out for lunch. Dave, thankfully, was able to come, too. We never get out and I was super happy he came!

We were seated outside at Harbourside Lobstermania, and enjoyed the afternoon on the water. The service was great, the weather was perfect and the food was pretty reasonable- although I totally should have gotten some seafood and not the South Western Salad (it was good… but I totally drooled over Dave’s fish & chips!). We didn’t sit and talk about the piled up paper in envelopes (they go by the name Billzzzz), or the unrelenting issues in Rhode Island… we talked about Dave’s upcoming business trip to Taiwan (WHAT?!?!), the LPA conference in DC where we will go out to eat at a college friend’s new place (Beuchert’s Saloon), and love, babies, vacations.

For one afternoon… we just let it all go. And man, did we need to!

Sure, Dave came home and worked all night in the basement to make up for the fact that we went out, but he was happy to. He was happy to treat his ladies to a nice afternoon and to hang out and enjoy a beer. Thank you to Alex for her awesome photo skills:

HarboursideLob

Happy Monday to you, Reader!!!

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May 15, 2013 · 6:50 am

Boston, this one’s for you

It’s been a month. A month since the terror ripped The City to the North apart. A month since murders, manhunts, city-wide panic, families locked in their homes, children kept from school, businesses closed and roads unused to free-up police. It’s been a month. And we remain Boston Strong.

Boston StrongCollage

With the Bruins making a comeback that will go down in history- I can’t help but think what I will remember more than explosions, the cover of Sports Illustrated, a play-off game that brought a city back from such sadness… I will remember John and Juli.

Below are their accounts directly after the race… I know there are still so many feelings running through the athletes- as with all of the Boston 2013 runners. Rather than let Boston be remembered as That Day, I want to preserve and celebrate it as the day history was made! Thank you to John and Juli for returning to Boston and finishing the race, and the beautiful medal-ing Owen did for his dad- It’s a moment that watching in the VIDEO brings tears to my eyes every time (how blessed we are with technology that we can all share it).

 

Boston Marathon
by Juli Windsor

Overwhelmed with sadness and heartbroken for those who lost loved ones today. I was only half a mile from the finish line, looking at a 4:30:00 finishing time, when I was stopped and told the race was canceled. There was confusion among the crowds and disbelief after hearing bombs had gone off at the finishing line. My heart dropped, knowing Blake, my mom, and mother-in-law were all at the finish line. Phone lines were down, so my attempt to call from a stranger’s phone was all in vain. All I could do was pray. I thought one of the most exciting days of my life was about to turn into one of the worst.

Thankfully, my family had crossed from the other side of the street from where the second bomb went off after I told them earlier that morning that I run on the right side of the road. Had I not said that, they would have been in front of one of the explosions. My initial goal was 4:15:00… had I not had trouble with the hills, I could have also been affected. My mom incurred some minor injuries and bruising from being pushed down in the crowds, but is otherwise fine. Overall, we’re just thankful.

When all this happened, I ran back to John Young who I knew was less than a mile behind me. John Young, I really am so thankful you were there and it provided so much comfort to be with someone I knew. We may not have crossed the finish line, but we achieved something today.

Pray for the families who lost loved ones and those who were injured. I’m so proud of Natalie Stavas for stepping in at the scene and providing CPR literally right after running a marathon. You never stop amazing me.

Blake, I don’t think I could have handled anything happening to you today. It’s difficult to even imagine. All I can do is sing praise for God’s protection.

By John Young

The Boston Marathon was the most surreal race of my life. THOUSANDS cheering me for MILES AND MILES. My goal was not a medal or even to finish. My goal was to have people realize that you can do ANYTHING you want no matter what body you have. I feel both Juli and I succeeded in doing that 100 times over. By the way, she is FAST and passed me with about 2 miles to go, leaving 100 minutes AFTER I did. But to run for almost 6 hours and listen to people cheer me on, is an experience I will never forget. Don’t feel sorry I did not finish, be HAPPY I started. Running (maybe walking a bit) up “Heartbreak Hill” I heard a young boy say, “Dad look at the little man running”, to which the father calmly stated, “He’s going to be one of the first dwarfs to run the Boston Marathon”. That’s all I needed to hear. Please don’t forget to pray for the families of the dead and injured.

 

Photos from Charlie Abrahams, Boston Globe, and other sources

Photos from Charlie Abrahams, Boston Globe, and other sources

Reliving these moments with John and Juli brings me, as a parent of a child with dwarfism, more confidence that she can do anything she wants and that we can share my love of sports together! We’re celebrating with you, John, Juli and Boston!

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May 13, 2013 · 7:00 am

Marvelous Monday

Hello Reader! I hope you had a wonderful weekend- and a Happy Mother’s Day to all you moms out there!!!

Normally, I focus on being thankful, talking about something that has to do with dwarfism and something random. This week I want to just share what I am thankful for and explain a bit more.

I am thankful for life.

There are a lot of things that bring me to this, most of all, just being a mom. I never thought I would be graced with a child. I lived a teenage existence that left me wanting little from life, except to end. I was sad, lonely and mean. Mean to myself, mean to people around me. I was scared,  which made me more mean. It was hard- almost as hard to live as to admit. But then, it all began to change until, finally, Dave found me. Fast-forward a few years and I am slowly making bonds with my in-laws and procuring friendships from all walks of life. And best of all, I am Mom to one beautiful, talented, brilliant, HAPPY little girl! She doesn’t just light up our lives, she brings a smile to everyone she sees.

So the look on her face that I saw Friday afternoon was not one I will soon forget.

We were headed to the Omni Hotel in Providence to pick up my race packet for the Cox 5k on Saturday. This was going to be my PR 5k. My first race since August 2011, when I was just pregnant with Addie (following a heart breaking miscarriage). This race was going to define me. My mother-in-law had been spending almost every evening with Addie to allow me to train the course- mapping out the hills with my legs, retraining my muscles to take long strides, lead with my toes, control my breathing and water intake. I was ready. I was under 11-minute miles and was sure I could pull 10 minute miles on race day.

CRASH

It all came to a screeching halt about 250 yards from exit 18 on I-95 North. As traffic gently slowed, I applied pressure to my brakes. When he hit, I had no idea it was coming. I jammed my foot into the brake to avoid being tossed further forward in our lane. I straightened myself from the hunched position as quickly as I could, hearing Addie’s shrill scream from the back. I searched all the mirrors in my car. I leapt from my vehicle, screaming at the young man who hit me to, “Call 9-1-1. There’s a baby in my car!” Not just any baby. My baby. My whole world was strapped into her car seat with the most wild-eyed look I’d ever seen come across her face. The multiple attempts at a lumbar puncture when she was an infant- doctors jabbing her time and time again in her spine- could not rival the fear in her eyes. I grabbed my cell phone from the diaper bag in the backseat and dialed emergency. I cried into the phone, pleading for them to hurry. All I could think was Addie’s spine. It wracked my brain. I was seeing white. It was hot, traffic was flying by. No one stopped- in fact, people honked for us to move. “THERE’S A BABY IN THE CAR!” I screamed as they whizzed by. I felt the driver who was planted in the hatch of my SUV back-off. “STOP!” I boomed at him as I quickly went about snapping pictures of our vehicles. He slammed on his brakes before his car broke free from mine. He was scared and apologizing. “I just looked down for a minute…,” he stammered, phone in hand. The damn thing looked like it was attached to his palm. He was scared. He saw Addie in the backseat. Every apology that came through my window from his lips scraped at my soul. I called Dave, “We were hit. An accident. I’m getting her to Hasbro.” “I’m on my way.” We hung up- the hot air of the day buzzed around me.

Car Accident

It only takes a second to kill someone.

We pulled off to the side. He came to my passenger window again- he was sorry, so sorry. The only thing I could do was ask if he had his insurance information with him. He ran back to his car and handed it to me through the window. I wrote everything down on the paper I keep in my glove compartment. I spoke no other words except, “She has a spinal issue. Pray.” I didn’t mean it as a threat. I meant it as a request. Please pray this does not bring upset to her body- but I’d said it through swallowed tears and clenched teeth. “Is this all your info?” I asked as I handed it back. “Yes.”

My father-in-law showed up. Dave was en route from Weymouth, running out of his office with a “my wife’s been in an accident,” and nothing more. Behind us on the highway I could see where the trooper was that was supposed to be here. I could see the rescue that was meant for Addie. There was another accident. It was hot. Addie was bright red from the heat and scared. Trying to see what was happening, every car that went by causing her eyes to flash open wide. A fire engine pulled over to wait with us. Multiple cars drove by. People on cell phones- talking, texting.

It only takes a second to kill someone.

“I only looked down for a second. Just to see…,” he said again and again. Then his mother showed up yelling in Spanish. I watched his head bow down as she pointed at the crushed pile of green and yelled. He was sorry, and I was sorry I was not able to offer him forgiveness. But, it only takes a second to kill someone. When you look down at your phone at that text message that couldn’t wait, you could change someone’s life forever. You could kill someone’s mother, child, father, brother, son, cousin, aunt, uncle, niece, nephew, friend. You could kill a teacher, doctor, student, the woman that makes your coffee everyday, your local bartender, a man you’d never met and never would. Because, it only takes a second to kill someone.

My head was pounding, I tried to get Addie to drink some water. Where were the cops? Where was the rescue? Finally. We spoke to the officer separately. I filled out my witness statement. “I can’t offer you an escort because we only have 3 cars out today. I’m sorry,” said the trooper. “Thank you for coming. Stay safe- I’ll take her myself.” I looked up at him. “Thank you- you both take care,” he replied. I was in my car and pulling out onto the jammed highway before I could say goodbye to my father-in-law. I drove the speed limit, which only made my head hurt more. My teeth clenching in their respective roots- each one pressing into my jaw so hard I was beginning to feel dizzy.

Instead of picking up my race packet and heading to Pinkberry for some treats, I was bringing my baby to Hasbro Children’s Hospital. “Don’t fall asleep, Addie!” I yelled into the backseat.

We pulled in to the valet parking area in front of the ER where Dave was waiting. “DO NOT take her out of the car seat!” I barked. Be gentle. Bring her in slowly. I was breaking on the inside. She passed the initial exam and we were told it was OK to remove her from the seat. Vitals, normal. Initial physical exam, normal.

Then we were in a room. We waited. The happiest baby passed her neuro exam and flirted with every doctor that walked by (of course). She was checked again. Calls were placed to Dr. Bober, her geneticist. Again, she was checked. She crawled and stood. She was happy… as usual.

AtHasbro

She was alive.

She continues to be monitored at night and we watch for signs of pain. For signs that compression is becoming an issue.

But what about the race? Dave drove us to the hotel after Addie was discharged to get my packet. I limped into the Health Expo with my hospital bracelet on, wondering if I was even capable of running the next day. Weeks of training- feeling like a million bucks, complete with healthy knees and a strong stride had all come to a halt as I felt each muscle twinge from my knee to my ankle like knives stabbing at the limb. My right leg felt useless.

“Do you know your number,” a woman asked from behind the 6 foot table. “203,” I responded. “Michelle Martin… Mar… Martinnnn…” “Martinka. Yes.” I grabbed my pins and moved to the left where I was given a shirt and my bag. I wanted to check it all out. Was there a onesie for Addie or an armband for my phone (which I need!)? I have no idea. I limped back to the waiting car full of my family.

Packet Pickup

I pinned my bib to my shirt Friday night, pumped full of Tylenol and water. “I don’t know if I can do this,” I said, looking at Dave. “Then don’t,” he replied. He was right. Everything hurt. My head was blurring my vision and my legs weren’t working- he had to get my contact case from the bathroom for me. I was broken.

But so are thousands of leukemia patients everyday. The people I signed up to help. The people I raised money for. Those people hurt everyday. I run for Team in Training and I would not let them down.

I woke up Saturday morning and took 3 Tylenol. I laced my shoes up and put on my shirt. I was running to honor Belle Bradley. I was running to remember my Dad and my cousin. I was going to finish.

I didn’t fail, but I didn’t succeed. Unless you’re a runner, you won’t get it. Running it wasn’t enough. My teammates were SO supportive and all the love at the mile 2 water stop urged me to keep going, but there were lots of tears as I pushed myself up the hill. People die from this, I repeated to myself. Dad help me, I begged. Everything hurt, and it was only a 5k.

LLScox5k

I was angry all my training had been stripped from me for a godforsaken text message.
I should have been thankful for my life- I smiled at the thought- but reeled inside.

I jogged a bit (I had the most amazing coach by my side)… but I walked a lot and limped a bit, too. My 30 minutes slipped away. They became something closer to 35. The soreness throughout my body raked up my spine, splitting my body down the the right ankle bone. I was doing this to save lives, but I didn’t feel much like I was living well on my own. My race I’d worked so hard for was taken away… it only takes a second to kill someone.

I grabbed ice from the med trailer at the race, shared a banana with Addie and was driven home by Dave. I showered and packed myself into the car and headed to the ER (the only place that will take “3rd party insurance”). X-rays showed no break, but the doctor gave me a referral to an orthopedist and an air cast and advised me to stay off it. I guess he’s never been a stay-at-home mom. I plan on seeing a chiropractor to try and alleviate the headache that’s going on day three.

I spent Saturday night getting my tattoo for Addie (a blog in itself), my first in 5 years, and eating dinner in Newport with my loves. Mother’s Day was beautiful and I got to spend it with two very important women: my mother-in-law and sister-in-law.

mothers day pictures

I am thankful for life.

This was supposed to be a race-recap. A thrilling ride for you to take with me about making it back from a near-bedrest pregnancy to a PR. But in place of an age-group first, I’ve amassed a collection of hospital bracelets.

IMAG3150

There’s no making this OK. Instead, it’s a PSA: Put down your phone. Save a life.

As we pulled into the driveway from Hasbro, I had to snap this photo. She was finally sleeping. Safe. Home.

Homefromthehospital

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May 6, 2013 · 8:07 am

Listen to Me: Marvelous Monday

I’ve grown up, bought a house, married, gotten a puppy, had a baby, cooked a few thousand meals, given up part of my identity to be known as Mom or, more accurately, Addie’s Mom, I decided to stay home (at least for now), and I have a handful of friends I could not get through life without… then I met my fellow Rhody Bloggers and that changed. I met people that I didn’t want to live without. Women with stories that made me cry til I was dry, laugh til I was crying, buy products I never knew existed and teach me how to be a better Mom, wife, friend and human. This week, and every week going forth, I will be thankful that I was able to be a part of Listen to Your Mother. I didn’t make the show (you can read about that HERE), but I got to see it, live the moments each woman bravely shared- whether it’s a life lesson about grocery shopping with kids, how we struggle to overcome our insecurities, having emotions we wish we could control, about our mothers shaping us just by believing in what we could do- I lived it. I sat between two new friends of mine, as we each shed tears, shared laughs and then drinks after the show- it was an experience I will treasure always. Thank you to Carla and Laura for producing the best first LTYM: Providence!

Me, cast member Jackie Hennessy of Venting Sessions, Carina and Tera of Girl Gone Healthy

Me, cast member Jackie Hennessy of Venting Sessions, Carina and Tera of Girl Gone Healthy

We are doing very important work with our pens... like math.

We are doing very important work with our pens… like math.

New friends and snuggle buddies <3

New friends and snuggle buddies <3

 

My random of the week is… GET IT DONE NO MATTER WHERE YOU ARE! If you’re not following me anywhere but here, maybe you haven’t been as inundated as you should be with my Girl Gone Healthy posts. Well, that sucks for you! Tera is an inspiration as a woman, wife and mother- not to mention a warrior. This lady gets it done, no matter what. I’ll keep it brief, but the next time you say you can’t get your workout in because you have to get the food shopping done, you darn well better park FAR away from the front door. This is Tera this weekend, in heels, walking the 4 flights of stairs (she did it 3 times) to get a little workout in. And stairs? They’re no joke.

In heels, 4 flights, 3 times. Get it done.

In heels, 4 flights, 3 times. Get it done.

Lastly… dwarfism! Lots of people have pointed out Addie’s belly, so much so, that I began to get concerned. As I have done many times before, I turned to my POLP (parents of little people) friends and asked: is that normal? I kind of loathe the word, but truthfully… we all have our own normals in life. But I digress… here is some information about why there is a belly on the little beauty (besides the fact that she eats very healthfully… and completely). Children with achondroplasia often have lordosis, or sway back. This makes the belly look like it’s sticking out more. A smaller chest also gives the appearance of a large tummy. Other factors: smaller space leaves the belly the place where many achondroplastic children show weight and it’s super common that after eating the belly is visibly more full!

As I wiped my forehead of worry-lines, I looked over at my sweet girl. That belly so many like to point out: it’s beautiful. It’s ticklish, it holds many kisses, it flattens out against my body as we snuggle in the morning, it rounds to my hand when I carry her facing out, and fits right underneath my chest when I carry her to me. I love that belly.

Belly I Love

**AND WE HAD A FIRST THIS WEEK… JUST WANTED TO SHARE: Addie climbed up a step!!!!

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April 29, 2013 · 6:59 am

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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April 27, 2013 · 7:16 am

A letter from Mom

Dearest Girl,

I have been scrolling through your pictures almost every night. There are thousands. Literally. When you were born, learning to nurse, taking your first bottle, your first bite of food (avocado!) and almost every food thereafter, your smiles, first shoes (knitted owl slippers), snuggles with Daddy, tummy time…

I love looking at them all.

I took one just yesterday and could not believe it was you.

Your smile is beautiful (and the two upper teeth just popped through that morning)- you’re not showing the discomfort from teething or the shots you had just last afternoon. You’re just perfect. In your Gap cropped jean jacket (thank you Aunt Val and Uncle Greg) and jean skirt and mix tape onesie (thanks Auntie Becky), sporting your Old Navy loafers… You’re my big girl. I don’t like to think about it, but you’re more like a toddler everyday.

GrownUpAddie

You point at what you want, you maneuver yourself all over the house, you find things to help you sit up and pull yourself to standing, you sleep in your own bed, brush your hair and teeth (!) and, best of all, you give me hugs and pat my back whenever I pick you up. Somehow you’re a black hole, always saying “mmmuuuuummmm” (yum) to tell me you’re hungry, and thankfully- avocado can always ease your hunger (mama’s girl, for sure!).

You are becoming a beautiful young lady. Thank you for being you, sweet girl.

Love,
Your Proud Momma

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April 22, 2013 · 7:14 am

Marvelous Monday

Hello Reader! I missed you last Monday- BUT the site made a seamless transition to its new host and here I am!

As many read yesterday HERE, I lost my father 15 years ago. This week, what I am thankful for is my niece Hadley. She is in my life because we were meant to have a special bond- a connection only an aunt can have with a child- to keep each other smiling when we forget how. I took Hadley aside as her party was winding down and we had a little talk. She smiled at me, and drooled a bit- to most it would seem that she didn’t understand me- but her smile came just as my eyes began to tear up and she let me hug her to me. It was a brief moment, but I am so glad that we had it. I love this beautiful girl!

Hadley's Party

My random of the week is date nights! I agree everyone needs some time without their children, but I don’t know that I’m ready for it. We went out to The Grand Tasting for Eat Drink RI festival with tickets that we won.

EATDRINKRI

It. Was. Amazing! Not just because we felt like we were just dating again (getting a little day-drunk will do that to you!), but because we hadn’t been out in so long and it wasn’t forced. I felt comfortable, albeit nervous, about leaving Addie, but I knew that she was old enough to communicate her wants and needs well enough to my mother-in-law and that she would have fun. Lots of my friends need to go out, but that need is not something I feel yet. Maybe it’s because I don’t let myself- it’s not like we have excess cash to go to dinner or the movies, but truly, I think it’s because Dave and I don’t get much family time and that’s the time we want to spend together. We dated and got married and had 3 “single” years together- in our first year as parents we wanted to be parents as much as we could! They’re only in babyhood once- we will be married forever <3 Thank you to Jen at Keekoin for the opportunity to have a beautiful afternoon together and my in-laws for taking such great care of Miss Adelaide!

Addie at InLaws

Lastly, my information about dwarfism is an update on Miss Addie AND a little bit about why we travel. We went to Delaware last week and had a great check-up (and first visit) with Dr. MacKenzie. Addie didn’t get the full skeletal work-up (thanks insurance company), but she did have two spinal views and an x-ray of her lower limbs (read: legs) and all of her “pictures” looked great!

As I’ve mentioned before, having the proper care for children with skeletal dysplasia is very important. While many children are perfectly healthy, monitoring their bone growth, as well as their overall health and development are very important factors to having a healthy adult life. Just like an average height child with a difference, parents want to bring their children to the person who knows best about their child’s condition- whether it is thyroid or behavioral, a hearing loss or vision problem, tippy-toe walking, etc. Addie goes to the closest doctors who specialize in, not just “has patients” with, skeletal dysplasia. Thankfully, the closest doctors are also on the medical advisory board for the LPA- which makes me feel all the better about her going to them. Dr. Bober (who was away on personal leave this visit) is her geneticist, and Dr. MacKenzie is her orthopedic specialist. When we saw him, Addie was in great spirits and loved playing on the table (i.e. eating paper).

Exam

We travel 350 miles (each way) to Wilmington, Delaware to A.I. DuPont Hospital, where we see these two specialist who work as a team, every six months. It’s amazing to see Addie’s progress and the amount of work that goes into proper care- all the questions, the physical exams that are done so gently- using minimal invasive tests like blood work- in favor of research and a thorough physical exam, the listening and true concern for each question we have, and making sure that we are comfortable with the care plan given- all make Dave and I so happy we are able to make the drive. We are lucky that my parents live about 80 miles north of the hospital so we stay with them on our visits, but there is a Ronald McDonald House there, too, and I know so many families who just love how welcome they are there. The hospital is pretty great, too, because right outside they have a beautiful playground with lots of places to sit and enjoy the weather! Addie LOVED playing after her appointment and got to go on a swing for the first time! …Of course for our picnic, we went to the local Saladworks (YUM!) and got our favorites to enjoy :) I wish Rhode Island would open a location!

Playground at DuPontEating together

This was Addie’s first visit to MacKenzie, and he saw that her kyphosis is still there, but he is hopeful that it will straighten itself out as she learns to walk and hold her spine straight, and her legs look great, too! I have been SO worried about her ankles, as they seem to bend out- I’ve never seen another baby with ankles like Addie’s- but he told me that that was normal. I have learned to laugh when I hear that word, but in this case it made me smile. Now I know that it’s normal for my achon baby to have ankles like this- sometimes it’s strange to be normal :)

Thanks for catching up with me! I hope you have a beautiful week ahead and a Marvelous Monday, today!

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April 17, 2013 · 12:17 pm

A year…

Last year I was sure I’d lost all control of my bladder. This year, my tear ducts sprung a leak. Where is my baby? But really… on April 15, 2012, I could have sworn I was peeing my pants. Happily, that wasn’t the case… Addie was just trying to make her way out, and I was relaxed and ready. I’d done everything the classes told me to in preparation, and I was ready for: yoga, birthing, breastfeeding, care of a newborn, care of a new baby, preparing your home, first time pregnancy group- the list goes on. I was truly equipped for this thing they call parenting.

And yet, no one prepares you for how hard birthdays will be.

Yesterday was the last morning I woke up with Addie under a year old.

Berry-covered baby!

Berry-covered baby!

I woke up to this girl on the pillow with me... and I cried.

I woke up to this girl on the pillow with me… and I cried.

She had gotten up early and Dave took her downstairs for her fruit and milk breakfast, and then brought her back to bed with me. She crawled from the middle of the bed onto my pillow and fell back asleep. It was a perfect morning- as most are- with my sweet girl.

We spent the day with a friend, went for a walk in the woods, and another with Dave when he got home from work.

The day before one!

The day before one!

And as she was going down for the night, I had a sinking feeling in my stomach. When I wake up tomorrow, she’ll be a year.

Newborn

Dimery Photopgraphy

 

So, here we are.

Cake smash

Dimery Photography

When I began to think about this post, I had a list of a million things I missed… but in the wake of Boston, there is just too much to look forward to  in life. While so many things will change, so many will remain the same. Instead of a list of all the things I miss, I paired it down to these: As a newborn, Addie would make a noise that sounded like inga, when she was hungry. Like clockwork, she would say, “inga”, and I knew that she was ready to nurse. As she got older, she stopped saying inga and began to sign for milk- which she knew was on the way because she put herself on a schedule. At 12 months, she says mummm, which oddly means yum. I know one day, this too will fade, but I love having a new sound to look forward to. I miss the 3am feedings, but she hasn’t woken for a nighttime feeding since she was 3months, so I guess I need to get over that. Lastly, I miss sleeping with her every night. We co-slept for 8 months and 30 days. I have a letter half written to her about that… it broke my heart when she laid down and went right to sleep in her crib. Every night since January 16th, she’s been in her own bed. She self-soothes when she wakes by “reading” or turning music on. She’s growing into her own person, and even at a year, sometimes she doesn’t need me. The good part is: she still needs me a lot more than she doesn’t.

Last year, the day of the Boston Marathon, I was sure Addie was coming- she was going to be my marathon baby. My water had broken the night before, and it had been a long labor thus far. But she stayed in. I tried so hard to relax and breathe- I went over 30 hours without medication or any interference before agreeing to an epidural to sleep early Tuesday morning. When I woke up a few hours later, I felt my contractions and was told it was OK to push. Three hours later, she was in my arms. The 38 weeks I’d waited were for this perfect being I was holding to my chest.

Now I’m watching her sleep, and I want a way to put her back in. I want to know that she will always be OK- that I can protect her from the unknown. I’m unsure of the world I brought this child into. I was going to bring her to the marathon yesterday, but after an insurance SNAFU, didn’t have the money to spend. Does God work in mysterious ways?

Yes.

In this year Addie has shown me what unconditional love is, and why my own mother never gave up on me. She has shown me patience, generosity, what being proactive really means. She’s shown me how to throw caution to the wind and blog to the world about my experiences. She’s been my anchor, when I was supposed to be hers. She is the reason I know how to laugh at myself. She has shown me it’s OK to smile while you take it all in stride, and that sometimes the news you expect isn’t the news you will receive. She has shown me that dwarfism will not define her, or us. She is the reason Dave and I were brought together.

From the hospital
Addie at Hosbro

To best friends

Hadley and Addie train

We have created a new extended family that would not have been possible without Addie’s inner beauty, sparkling personality and her being exactly who she is. We are blessed, we are lucky, we are thankful.

Suddenly, in the last few weeks, her waves have gone from backwards to front. She sings hi at passerby. She wants to get down from your arms to hold your fingers and walk. She takes the brush to fix her hair. My baby girl is growing out of her babyhood, and I could not be more proud to be her Mom (and Dave to be her Dad).

While we cannot protect her from everything, I know that we will always do our best to keep her safe, and she will always, always be surrounded by love.

Happy first birthday, sweet girl. I love you to the moon and back.

Addie and mommy

Dimery Photography

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April 8, 2013 · 7:49 pm

Marvelous Monday

Sorry for the late Marvelous Monday post! It was quite the weekend here… thus I will be brief!

This week I am thankful to be a part of such an amazing group of women. I am a Rhody Blogger, and there is a smaller group I support called the Rhody Bloggers for Good- they are amazing women. Truly inspiring. This weekend they hosted (with La-Z-Boy Warwick) a sit-a-thon for Belle Bradley, who is battling cancer and her mom, Melissa- who is battling not just Belle’s illness, but the medical bills associated with the disease. I was blessed to be a part of the festivities, donating things to the yard sale and sitting for a few hours tweeting, instagram-ing and Facebook-ing the event. Together, $10,000 were raised to help the Bradley family!

From Rhody Bloggers

From Rhody Bloggers

My dwarfism fact of the week brings up our week ahead! Many children with dwarfism see genetic and orthopedic specialists, among many other types- there are very few to actually specialize in skeletal dysplasia, however. In Addie’s case, we drive over 300 miles each way to see Dr. Bober and Dr. MacKenzie for genetics and orthopedics, respectively. It’s a lot of driving, and we do it twice a year- but at least it’s not a flight away- and we are so thankful that Addie has the best care possible from two of the most amazing doctors. There are many children out there who have to travel much further than we do, or don’t have any access to a specialist at all. For all we have and all the properly trained doctors we have, we are so blessed! We are heading to Delaware this week, in fact!

Lastly, my random of the week: With my baby girl coming up on one year, it’s amazing to see her growing into her own person, but also taking on traits of both Dave and myself. Here she is doing her first instructional vlog on how to blog and her first typed piece below! It feels good to have such a talented baby!

  Bbn sc jdfbfghj0 05202 v0bvc dxd0 vc vc vc vcv cc kjm,

//’,./,.nv c  vb 0 n

Ng hbfnjhgvjhnh

Have a beautiful week!!!

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April 3, 2013 · 10:42 am

That Moment

It seems like Crazy Pickle Lady is just too enticing for people to leave alone. In light of that, this post will be both brief and thought provoking (I hope).

I recently (read: yesterday) got a lengthy email from a student (according to their email) telling me that I have no right to expect people to not laugh at or be nice to my daughter, I cannot protect the “real” world from my daughter (just wanted to write that because they inverted their meaning, and I had a good laugh) and that life is “short” and I should be doing something more important.

In this country we have many rights- one is to live freely. Because of this, I approach all people thinking the best about them. Whether you are the homeless person I gave a water bottle to, the woman with a killer bum at the gym or the man who signs my husband’s paycheck- I believe you are a good person until you prove me wrong. (BTW, Dave’s boss is an incredibly amazing man.) We come in all shapes and sizes, from all walks of life, going to all sorts of places. I do not expect the worst from people, as that is disappointing from the beginning. I believe in my fellow human, and I have the right to think that they will treat me with the same kindness and graciousness that I hope to show them. I’m not saying we don’t all have bad days, but if I approach all dogs without fear or judgement regardless of breed, shouldn’t I offer the same courtesy (and expect it) from my fellow human?

About life, I will say this. Life is not short. It is the longest thing you will ever do. From the moment you sprang forth from your mother, you were living and you will not stop until you die. Live each day doing what you feel passionate about- NOT what others feel passionate about. A true waste of time is not being true to yourself.

Lastly, I don’t feel the need to protect Addie from the world (or the world from her- although her cuteness is a lot to handle). But, as a parent, we do what we can to make the world a better place for our kids.

Below is our email exchange (name removed for privacy). I wanted to share so that you can understand what the above is in summation of- including my internal anger being attacked. I never once have shown any anger, as it was a fleeting moment of inner unease. I think we are all guilty of anger at some point- what makes us strong are the actions we take, not the ones that we do not allow to froth over.

Sent: Tuesday, April 2, 2013 12:19 PM
Subject: Seriously?
To Whom It May Concern,
I recently read about your crusade to have a company change the name of its product because you found it offensive. The word ‘midget’ did not refer to a human but rather a type of pickle. It seems to me that you were projecting that term onto your daughter–in that case, who is actually the offender? It scares me that this type of hyper-political correctness is threatening our First Amendment right to free speech. I have a few friends who have Dwarfism and they jointly agree that you are being ridiculous and frivolous in your attempt to raise awareness about the condition.
Let me tell you, the world will not shelter your daughter because she has dwarfism. People will stare and make comments. When I had to use a wheelchair for months due to a severe injury, I received weird looks all the time. The best I could do was to keep my head up and smile and start a conversation. Your daughter will be best served learning to be proud and secure in herself, making no apologies to anyone. That said, she does not have the right to expect the world to consider her needs and feelings.Just like you do not have the right NOT to be offended.
Raise awareness about Dwarfism by productively engaging the public in conversation  and not by some stupid helicopter-parent attempt to shield the real world from your daughter. Seriously, find something better to do.
I will be writing the company to voice my opinion on midget pickles.
P.S. Do you have a conniption every time you see crackers or beans?

Sent: Tuesday, April 02, 2013 8:17 PM
Subject: Re: Seriously?
Laura,
I’m sorry you feel as though this was a crusade and that I don’t respect your (or anyone elses) First Amendment right. I do, which is why I used my right to voice my opinion. I do not represent the dwarfism community- nor did I claim to- thus your friends’ opinions truly have no bearing on me. I have been in contact with many people who appreciate my action (singular- as I only made one video and that was it), and many who don’t. In life, we cannot please everyone. People will, of course hurt Addie’s feelings, as my own have been hurt for different reasons. I meet everyone with a smile and grace, and I will expect the same from Adelaide at all times. We all have the right to feel how we feel, so I’m not sure why you speak to the point that neither Addie nor I have the right to expect people to be considerate. I teach Addie that we all treat others with respect, goodwill and kindness- just as we want to be treated. Though not everyone will be so gracious, we should never expect the worst from our fellow human.
While I appreciate your email, it took a less effective turn at the end… midget is not an innocuous word that is its meaning. A cracker is a cracker and white beans and black beans are just that in their color. Those questions seem silly to me. I respect your reply, if you so desire to send one, but I ask you to refrain from anymore name calling towards me. I am not stupid, frivolous or ridiculous- we are just different and have different opinions.
Thank you for your time,
Chelley Martinka

Subject: Seriously?
Date: Tue, Apr 2, 2013 11:20 pm
Woah there, someone needs to step off the self-righteous soapbox. My point is, words are words. They don’t carry a connotation unless you apply a context. Pickles are not people and I don’t think the word ‘midget’ deserves to be scratched out of the English language simply because you project it on people. It’s an adjective that happened to describe small cucumbers. Time to grow up and realize you can’t child-proof the world for your kid. Like I stated earlier, you might want kindness, compassion, etc., but that does not mean you are guaranteed it. Voicing your opinion is one thing; expecting a company to yield to your demands because you feel offended by a name is quite another.
Oh, and ‘cracker’ can have a very pejorative meaning. So can ‘bean’ and by the way, it has nothing to do with white or black.  It depends on the context.
Just like you think my questions are silly, I think your crusade is ridiculous and frivolous. And stupid in the sense that you have achieved absolutely nothing except a campaign for hyper-political correctness.It’s a two- way street. Your tantrum has in no way improved the lives of people who have Dwarfism. Instead of treating people with Dwarfism as automatic victims, I suggest promoting the normal, healthy, successful people that they are. Heard of Peter Dinklage? A phenomenal actor who just so happens to have the same type of Dwarfism as your daughter. I don’t compare him to a pickle.
I don’t think you realize the hypocrisy of your statement that “we are different.” Indeed we are, and we obviously view pickles very differently. I just see pickles. You see an opportunity to project and express your overindulged rage. Let me enjoy my pickles with the original name printed on them. You don’t have to buy them or even walk past them in store. There, our differences have been resolved.
You might just want to think about growing a tougher skin because if the names on pickle jars are enough to set you off, you are not going to make it through the trials of puberty and adolescence when the time comes.
Life’s too short to focus things that will ultimately never matter. There is far greater suffering in the world that needs to be addressed.

Sent: Wednesday, April 03, 2013 7:11 AM
Subject: Re: Seriously?
I’m not sure why I’ve suddenly become self-righteous in your eyes, and I’m really not sure what article you read that painted my actions as expectant and demanding of change. I just asked, they called me to tell me it was a change in the works.
As we both recognize, will not agree on this subject and we are just repeating ourselves. I think the time has come for me to remove myself from this conversation.
Life is indeed not short, it is the longest thing you will ever do.
Chelley

Sent: Wednesday, April 03, 2013 10:21 AM
Subject: Re: Seriously?
If you cannot fathom how you are being self righteous, you are not very perceptive. I read that you almost broke every pickle jar in the aisle and flew into a rage about the word ‘midget.’
Life IS short for many people, especially children who suffer from terminal illness. You are an unbelievably pompous ass. Are you going to crusade now against Dunkin Donuts’ “munchkins” or protest Tolkien’s use of the word “hobbit?” The truth is, you’ve been dealt a card you’re not comfortable dealing with and the shame lies within you about your daughter. You’re the one who is small. Shame on you. I hope wisdom better serves you in the future, because you are clearly lacking any in the present.
Yes, I think it’s better you remove yourself from the conversation. You’re a new mom and still learning the curve, we can’t expect you to know much about anything.

Yikes! I hope everyone else is having a less confrontational Wednesday!

P.S. My brother passed away after less than 24 hours of life. It was, as I said, the longest thing he’d ever done.
Rest in peace, Jonathan. We got you as long as we were meant to and you lived life to your fullest. 4/8/90-4/9/90 <3

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