Tag Archives: Marvelous Monday

Marvelous Monday

And just like that: Monday!

We had a whirlwind week (ummm… it seems like this is a real pattern here), and now that we’re finally home, in our little abode, it is all hitting me. My phone is buzzing and vibrating with photo tags, well wishes, comments, and a list- a list of gifts, cards, beautiful  messages lining cards all meant for Addie. In just 2 years my sweet angel has so many who love her, who celebrate her. For all the people who could be there and all those who wanted to be, I am thankful. How can one little girl have  such love surrounding her? As I type away, I am watching her sleep, and even with her eyes closed and her chest rising and falling, with her gentle snore… there is still the hint of her smile. Her happiness and her personality are always shining through- and this is why people are there. She’s a magnet to love. Our love. Your love. Thank you for celebrating our (almost) two year old with us!

#aisforadelaide #happybirthday #AddieisTwo

*  *  *

I forgot to update everyone on Addie’s growth (which we truly only chart from her specialists) in the last post about Delaware, so I wanted to share her stats here:
23 Months:
24.25 pounds
29 inches long
20.3 inch head circumference

As I plotted her newest numbers with the doctors on the most important CHART according to her doctors (weight for height), we came up with Addie being at -1 SD for her head, which really put to rest the concern for hydrocephalus because her head is slowing on its growth  pattern. For height, she’s at +1 SD, so she’s right above the mean, and for weight she’s right in the middle. When you see the numbers on a growth chart, her own growth chart, it’s pretty cool! Dwarfism is an umbrella diagnosis with many forms defining it, and I feel very fortunate to have so much research about Addie’s form to help guide us through her possible medical needs.

*  *  *

Lastly, some random to start your week off… Heather, a fellow blogger and advocate, contacted me regarding a cause close to her heart. As I read her story and web page, I felt the need to share the information with you. As a child, I remember my school spending a lot of money to renovate during Spring Break one year. When we came back, there was some discussion about asbestos and that’s what they were doing… as a kid, I had no idea what that meant, but loved that our tiny school had gone through a face lift. Reading Heather’s story brings me such peace- knowing that I was not exposed to something so terrible as so many are. Please read and share her story…

At age 36, I was diagnosed with mesothelioma just 3 ½ months after my first and only child, Lily, was born. I was given just 15 months to live unless I underwent a drastic surgery to remove my left lung. Miraculously, I beat the odds and I’m still here eight years later.

Asbestos is not banned in the US, yet it’s the only known cause of mesothelioma. I was exposed to asbestos through my fathers work jacket when I was just a little girl; my diagnosis came about 30 years later. Once diagnosed, most patients die within 2 years. I am one of few survivors who openly share their story and work to spread awareness regarding the dangers of asbestos.

In honor of Asbestos Awareness Week (April 1-7), I created a webpage dedicated to raising awareness. Although this week has passed, I would love to help educate and protect your readers from this preventable disease!

Here’s the link to my awareness page: mesothelioma.com/heather/awareness

#themoreyouknow

Have a beautiful week, Reader!

11 Comments

Filed under Marvelous Monday

Marvelous Monday

I seriously cannot believe it’s Monday. I feel like we didn’t get a weekend- it was so jam-packed! …and while I am certainly stressed out and frazzled from the festivities, it’s the best feeling in the world.

I usually have a format… thankful dwarfism random that I follow, but this week, I have two thankful-s and no random. I know. I live on the wild side- even breaking my own rules!

SO this week, I am thankful for all the medical wonders we have at hand. While it is not my story, I will say that my newest nephew, Beckett James, has arrived. As I would expect any child of my bestie would be, he has a bit of a flare for the dramatic and didn’t make his entry into this world easy. But he is here. My beautiful (by everything but blood) sister is not only doing well, but looking like a super model, and they are heading home today. I spent much of my weekend running between birthday celebrations and the hospital, and I feel so tired but so energized at the same time. That feeling of holding new life. The one-on-one time of a new baby, in the quiet of the night (sure, I stayed a bit beyond visiting hours), talking to my friend. About our parents, about the future, about our families, and plans and and and. It was like a sleep over, with cooing and sweet baby breath. I took photos as my nephew took his first bath, and we laughed at re-learning to change a diaper (we both have girls for our first babes). This experience made me wish I lived closer to my big sister in Florida, wishing I could have been by her side, and also brought about such a deep love for this woman who mustered all of her love and strength to bring sweet Beckett into the world. I’m so excited for the next chapter!

And what else could I be thankful  for this week, if not the amazing women who rallied behind me almost 2 years ago through Rhode Island New Moms Connection? These women have given me so much love and support, and having them surround us to celebrate Addie’s second birthday (a little early) meant so much to us. We played, ate delicious pizza and mini cupcakes, and then played a bit more… and I watched as each child made connections to the others- all of whom they have known for their entire lives. Many of the kids ran up to other parents, giving hugs and kisses, because we all know each other. We all have a bond with each other- those first few weeks of motherhood that we spent together sitting on a floor with our new babies, trying to make sense of what we were doing right, and what we needed to change. Having those same women beside me… that’s what keeps me going. But there’s more. There are the moms I know from other personal experiences… like a friendship kindled over a wedding gown, flourishing through a love of hockey and sharing a first pregnancy! And friends from our cherished LPA community who made the hike to play, and pick up good conversation like we’d just spoken last week. A comfort and bond brought to us by a shared difference, making us  common- but a friendship we grow together watching our kids enjoy Life.

#aisforadelaide #birthdayparty #hangingaround

Just hanging around (BY HERSELF!!!!!). She’s come a long way in 2 years!

I have been blessed by my experiences, no matter how frazzling they may be, because they have brought me right here. To you. What will happen this week that will test you, but also teach you, nourish you and grow you? I hope  you find those moments and smile.

*  *  *

And what’s new in the dwarfism community this week? The LPA National Conference registration opened on the first!!! I would love to know what families will be there this year! We are so excited to meet new people, explore California and learn as much as we can at the workshops! Stay tuned to the blog for my conference tips later this month!

Lots of love to you this beautiful Spring week!
xo,

10 Comments

Filed under Marvelous Monday

Marvelous Monday

Another week has passed and another is beginning. And I am thankful for that. Many of my friends have been going through first losses in life- mostly grandparents- and have emailed me asking for advice… how to move on, get over it, stop crying. I know they ask because I lost my brother, grandfather, 18 year old cousin, father, uncle and multiple friends before the age of 21… my grandmother passed away a few hours before I needed to be in work. I still went. I sold 2 gowns before my boss asked me what was up. When I told her, she began to tear up and told me to go home. Dave and I have a cruel joke: I met his family through weddings. He met mine through funerals. When it comes to funerals, I’m an old pro at 29… and as the years have passed, my coping skills have changed, though not the steps to heal.

What are my steps?

1. Let it happen.
The  tears, the anger, the hurt, the pain, the laughter that makes you guilty to have, the fear of all the memories you think are fading, the idea that you can’t remember  certain facial features or their voice. Just let it happen.

This Monday just being thankful is enough. Telling people to enjoy every moment of their lives is disingenuous. There are things that are not enjoyable- that is life. However, reminding ourselves after a long day, a particularly trying day, that we are still here, to heal the hurts we may have made and mend the fences that we can, is all we can do. It never gets easier when we lose the ones we love, but it grows different in us. The things we thought we forgot? They come back. After 15 years, I suddenly started to hear my Dad’s voice in my dreams again. It’s not as deep as I thought it was, but there it is- clear as a bell- lulling me back into a dream I might otherwise have  awoken from.

Here’s to another week. Live. Love. Laugh. And, damn it, cry if you need to!

*  *  *

This week, my brief, but important dwarfism fact is more of a life lesson to all. Be conscious of your words. When approaching a difference, so not assume that everyone who is different is suffering. Very few people I know choose to describe their everyday as suffering. I embrace the fact that dwarfism is considered a disability. I do not fear what is fact- I choose to learn how we can improve and change our society to better include everyone- regardless of differences. What I choose to change also includes perception. My daughter smiles… All. The. Time. Even when we were told her right ear was pretty infected on Saturday, she was all smiles. In general, she is a tough cookie, but like most kids she lives a happy life. It is… well, it’s normal. How so? She’s never known anything different- and that, by definition of the word and subjective experience. The welts that make other parents cringe, the therapies, the extra appointments- that’s life. That’s not suffering. Suffering should be held sacred for the hardest moments in life- those that truly make us question the world. Suffering is not being different.

Please, choose your words wisely.

*  *  *

And last but not least, my random for the week. Again, words. My friend, we will call him C, works a fairly stressful job. It’s all people-relations and working with clients. Pleasing those that have too much money to spend, or too little and spend too much- a fine line between fun and babysitting for adults. He’s also a homeowner, small business owner and landlord. In short, he’s no fool. At his place of business, however, he’s often disrespected- even by well meaning customers who feel like they’ve made some kind of quick friendship and thus make an innapropriate remark or joke.

On one such occasion this weekend someone told him he needed to grow a thicker skin. He’s a funny guy, blue eyes, Italian, well-educated, a little over 6 feet with a good sense of humor and healthy respect for himself and others… but to this comment he replied that his skin was thick enough, perhaps he simply deserved some respect. While you think your words are innocent and that you’re in the right, remember his thought.

Happy Monday, Reader! May your week be full of thanks, love and respect.

love,

10 Comments

Filed under Marvelous Monday

Marvelous Monday

What a wonderful weekend- jammed packed with all I am thankful for and all things dwarfism! I have mentioned LPA about a million times, and all the support they offer to the LP community, but there is so much more than that.

There are lifelong memories made by friends who see each other a few times a year. Parents who lament all the silly things that we get that no one else truly does. Not life-altering stuff, but finding shoes that fit, are cool and also comfy. Why moving a faucet can make life easier for your child. How to hem jeans. It’s the same old parenting things we all think about, but rarely do we encounter so many seemingly minuscule things over and over and over.

The best part? When Addie gets into a large group of kids, there are no worries because this community is watching over her- everyone.

This mama may be suffering from serious pregnancy hormones, but when Jackie and Avery (two fabulous young ladies) took Addie’s hands and walked her to their dance circle complete with other girls, and encouraged her to dance, laughed with her and never let her out of their sight, I walked away, took my seat, gripped a cup of ice water and swallowed my tears. My face was hot. My body felt cold.

#aisforadelaide #firstdance #lparegional #2014

My daughter already has an amazing life.

I watched what her Spring and Fall would bring each year, as our District regionals pass by. I saw middle school dances and girlie laughter about things that us parents would just never understand. As I sipped my water, surrounded by women I’ve grown to love in our brief, but powerful 21 months as LPA members, we laughed at my verge of crying.

#aisforadelaide #ladiesnight #LPAspringregional2014

I have an amazing life.

These moments are not forever. We have our struggles. We have some of the happiest moments of our lives without the LPA, or anything related to dwarfism. Being little, or big, or average does not define us. Having such fabulous friends, regardless of distance, giving my child the opportunity to live her life and being guided by those around me. That defines me. There is nothing like knowing that your life changes shape when you let go of the reigns and just live.

With $100 in our pocket and a cooler full of fruit, bread, peanut butter and tuna, we went to Cape Cod. It was our first regional with our LPA district. We got to ask questions. We got to answer a few. I shared a conversation with men and women. Some were my height, some were not. But the conversations were the same. Our kids were being crazy, they all needed to sleep, we all enjoyed the sunset at the banquet, our clothes seemed to be getting tighter as the New England winter ceases to end. I joked with my ladies about this and that. We all ragged on each other, shared hugs, high-fived the  kids.

Being members of the LPA has allowed us to NOT define our family by dwarfism, but to learn in a safe, well educated environment for ourselves, our daughter (and future baby!) and those who will learn from us. To balance our lives between doctors and normalcy, because at the end of each day, I am doing the same as any parent… reading 102 books before bed, watching my child guzzle more water than they consumed the entire day and praying they don’t spring a leak in the night, kissing her cheeks and watching the monitor (sure, I’m also listening for snores and leg movements, but that’s neither here nor there). Addie? She’s just like your child. And me? I’m just like you. Tired, stressed and loving every minute of this crazy, fast-paced thing they call Parenting.

#aisforadelaide #swimming #capecop #seacresthotel #lpaspringregional2014

And my random  of the week? If you missed it before, don’t forget to check out this awesome video below <3 <3 <3 (Yes… I’m a bit excited to share after holding it in for 13 weeks!!!!!)

Happy Monday, Reader!!!

19 Comments

Filed under Marvelous Monday

Marvelous Monday

I’ve reflected time and time again about how beautiful the weeks are as they pass. Even when they really aren’t anything most would write home about- they are what make the big things seem SO spectacular. The mornings you get 5 extra minutes of sleep, a sip of hot coffee and some of the sweetest unintelligible love babble spoken from the lips of a small human you created. Those are just weekend mornings… but they are so much more when they’re too old to climb into bed with you. Too cool. Too grown up. Too on with their own lives.

What a beautiful opportunity we have as parents- no matter how we got here- to raise these people, shape their minds and change our whole perspective on the world with just the blink of two small eyes and the squeeze of one small hand firmly wrapped around our finger. Our children change the whole game of life.

Because of becoming a parent. Because I’m a parent to a child with dwarfism. Because I am a parent to a child with dwarfism who started a blog.

People come to me.
They ask questions.
They seek answers.

But, most of all, they want to hear the words so many doctors just won’t tell them: it’s going to be OK.

A young woman named Hannah, is such a parent. She asked me lots of questions on Facebook, through email and messenger, and then I gave her my personal number. We texted about achondroplasia, her son Jude, due in April, doctors, and being parents- before anything, we are just your average parents wanting the best for our babes. We talked about her upcoming shower and how excited she was.

Then an email. An emergency. A request for prayer.
At just 32 weeks, Jude was in distress and the doctors were making calls that scared Hannah and her husband Sullivan. An emergency c-section? So early?

We prayed.
Every night.
Sometimes it was to God, other times to my Dad to ask for his protection and sometimes just letting out tears to the Universe to be fair.

And then days passed, and his heartbeat was strong.

Brave Little Warrior

As Hannah passes 33 weeks, she begs her body for more time. To hold her sweet warrior, Jude, safely inside her and help him develop stronger each day. And we, The Martinka Family, are pulling right along with her.

This week, Reader, I ask you to send your love, messages and prayers to the Peters Family. You can read more on Hannah’s blog HERE, or join their Facebook page HERE to get updates.

Thank you for sharing all your Marvelous Monday with me. Have a beautiful week!

8 Comments

Filed under Achondroplasia, Community, Marvelous Monday

Marvelous Monday

Well hello, Reader! I hope your week is starting out great! We are still in the midst of digging out and salting and the sort, but we are together… and for that I am thankful!

So many times airlines are butchered in social media, but this week I want to say how thankful I am for US Airways and their amazing team! Last week Dave went on a business trip to Vegas for the DSE (Digital Signage Expo- riveting, right?), and just as he was packing I read we were looking at a storm. I was already feeling broken about him being gone for the week, but we made it all the way to Friday without too much incident. And then snow… I check flight #658 over and over and over, and each time the minutes to boarding crept further away.

Four and a half hours after it’s original departure time, he was on the plane… only by that time, his connecting flight in RI was departing North Carolina.

Ummmm… bad news bears.

More bad news? His current flight wasn’t due to arrive in NC until about 30 minutes after the last flight out was departing.

Instead of letting this deter him, Dave gave up on seeing his suitcase and prepped himself to sprint to the next gate in hopes that he would make it. The whole flight he was worried he would not see us and the snow would leave him stranded for part of the weekend in an airport.

So, he ran.

The last flight was, miraculously, delayed from 10:09 to 10:25, but hadn’t taken off yet. Deboarding at 10:24, he ran from gate B9 to C8, and saw the line of people ready to board. When he got to the ticket checker, he explained what happened from the delayed flight to his wife and daughter at home anxiously waiting for his arrival before the snow hit home again. With a, “let me see what I can do,” the man punched in some numbers to the computer and ripped off the old baggage claim ticket, and said, “have a good flight.” They briefly talked about how likely it was that his luggage would be stuck until the next day, but undeterred, he boarded and settled in for the 2+ hour flight.

Upon landing, Dave gave it a whirl at the luggage carousel. And there it was. His bag made it to Providence on the last flight out, on a flight Dave didn’t book until he got to the gate to the plane he was never meant to be on. US Airways went out of their way to get him home… and his luggage, too.

Sure luggage is no big deal. Dave packed knowing his flights would be delayed with lots of ID tags and any essentials in his carry-on, but the hustle and bustle luggage retrieval can take is just another hindrance we didn’t need this weekend. And we didn’t have to deal with! SO… THANK YOU US AIRWAYS!!!!!

*  *  *

As I’ve mentioned before, Becky Curran is a huge inspiration to me to continue to advocate for Addie and the dwarfism community. As a peer, she is strong, intelligent and just a great friend, so reading her recent post about being publicly approached in fear by a stranger in Boston (on a night out with friends) was alarming. What made me smile? Her attitude. She was not shamed, embarrassed or even upset. Becky just took that as an indicator that she needs to continue speaking and educating. How lucky am I to be friends with her? Very! Check out her website and book her to speak at your school or business today.

#aisforadelaide #beckycurran #inspire

*  *  *

And some random for your day? Table salt! I don’t know about you, but we are running low on salt here in New England. Because I want to keep our driveway and walkways well salted, I’ve invested in a few boxes of salt! From our local grocery store, it’s about 49¢ a piece, and does the trick in small spots, like on the steps in front of your house. While it’s not an ideal solution, it certainly can help reduce the slick surfaces while you (if you’re like me) run from store-to-store in a search for anything to melt the sidewalks/driveway/walkway that we all someday hope to see again.

stop-shop-plain-salt-17284

Have a beautiful week, Reader! may you stay warm and dry!

12 Comments

Filed under Community, Marvelous Monday

Marvelous Monday!

So let’s be real for a moment… sometimes the days get away from us. This weekend is an example for myself… and this week might as well be a write-off, as Dave is gone until late Friday night.

So… in lieu of my usual MM post, I leave you with this Monday morning wish:

#aisforadelaide #marvelousmonday

Leave a Comment

Filed under Marvelous Monday

Marvelous Monday

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

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

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

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

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

*  *  *

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

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

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

*  *  *

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

This is it #aisforadelaideblog

6 Comments

Filed under Marvelous Monday

Marvelous Monday

It’s Monday again, and it’s back to being a loner for a few days. Somehow February, the shortest month, will also be the month we see Dave the least in a long time! He’s off on a business trip in Pennsylvania this week and Vegas in two weeks. Although I am not looking forward to going it alone for that time, I am totally excited for girls’ time!!! With all the non-night waiting we will be doing, Addie and I can have dinner earlier every night- and yes- there will be dinner in bed more than once… because I want to watch The Little Mermaid in bed with her as a treat! I am planning some other fun things, like making a cake together (she LOVES to whisk), lots of painting and a movie night. Who else has ideas about what we could do? I’m open to suggestions!

But really, let’s get this party started with what I’m thankful for this week.
Dave, of course! Recently we have made the decision to move closer to his work, which means selling the house. On top of all the other things we have going on, a rough first year of medical bills with Addie accruing a lifetime of debt, and the desire to move to Mexico and live in a shack, Dave drags himself 50+ miles from home each morning, to be away from us for about 12 hours, then come home (usually) to a madhouse of me needing a moment to pee. Alone. Or dinner not quite ready, or so ready it’s now cold, the dog needing to go out, or at least be fed, Addie wanting to be picked up, or put down, or both, toys spread from one end of the living room to the other, and a stack of newly opened bills with the dates and minimums printed on them by yours truly.

But he smiles, says “give me one of these before I deal with that,” and plants a kiss on my lips while picking up Addie, taking off his boots and closing the half-opened refrigerator door simultaneously.

I have launched into Dave a lot, especially under the stress of 2013, but I am learning that we are a team. Neither one of us spends an extra dime. We don’t treat ourselves or feel like we are in need. We want for nothing. We have heat, a home, lots of movies, and enough food to eat. As we embark on this next year, which hopefully includes a move, we also look to each other for more support and more teamwork. Knowing that we are both doing our best and beyond- support and encouragement will only bring more success. I hope to write more and bring you more, Reader, while Dave hopes to further advance his career and give us a bit more comfort, if you will, as a family.

Sometimes I think $10,000 would solve our problems. Then I think… we have each other. We don’t have problems.

Thank you, Dave, for making us the team we are.

#aisforadelaide #martinkadelux

*  *  *

And for some *shock* controversy in the dwarfism community, I bring you The Wolf of Wall Street. No. I haven’t seen it. No. I won’t pay to see it. While I think Scorsese is a genius, I think he bombed this movie because we all know that cocaine and womanizing and ponzi schemes are wrong. But is throwing a human wrong?

The answer, which I hope is obvious, is yes. It is wrong. Regardless of a person being paid or not. It’s wrong. I have so many thoughts on why this movie makes me sad. Why, with a team of incredibly well educated, passionate and driven people, I worked for months on petitioning the writers, actors, producers and the like to cut the scene- which obviously didn’t work beyond getting the scene cut from previews. Why people won’t see that this isn’t funny, because the point of the film seemed to be to show some jerk and how jerky he was while being completely oblivious to his actions. Why though historically accurate to his actions the way this scene was initially shown to garner attention was horrifying.

This isn’t a debate as to whether the movie is good or bad. I care not. This is about whether the portrayal of this scene is necessary, or better yet, if it is safe to show people without giving them the ramifications of their actions. Beyond the embarrassment of another human. Injury, paralysis, death. I have a lot to say, but I have a friend who said it so well that I wanted to share his words.

So, when someone says something like this: “I really don’t see why people are upset with the movie.”Think of this:

It’s amazing how every time I discuss this, I have to bring up racism to explain how it relates. The N word has a sting to it, so much so that it’s referred to as the N word. When I say midget or hear it, it has a sting as well. But of course many won’t understand why I’m saying M-word, or will laugh it off because they are ignorant to what is in that word. The dehumanizing factor of it. How it deems a human being a prop, or a novelty that is beneath the standards of a human being. Many don’t see the big deal of this movie because they don’t feel that sting. They don’t see a minority being thrown as a dart and think, that is inherently wrong. I won’t go see this movie, not just because of that scene, but because I may fear for myself and my wife after the credits roll and we all leave. I can imagine the sounds of people laughing during that scene, laughing in utter ignorance. I can’t imagine the same crowd laughing when a slave is whipped on screen, or a Jew is forced out of his home. I can’t imagine them laughing if an actor were to say “fa**ots” aren’t people. But I can imagine the roar of the crowd when an individual with dwarfism is tossed and used as a toy. We are one of the few remaining minorities that it’s ok to humiliate for the sake of humiliation. That is why I won’t see this movie.

While I understand the shock-and-awe intended by the film, THIS piece says a lot. While I have a lot to say about the action, I have more to say about calling a human “it”.

Let that sink in.

Someone calling your child it. Because they’re a brunette? Because they have blue eyes? Because they have two feet? Because they are short?

This is why I will continue to advocate.
This is why I will not pay Scorsese, DiCaprio or anyone else.
I will create a more respectful world for my child and thousands of other children, too.
Dwarfism is not a disease.
Dwarfism is not a crime.
Cure your hearts. Open your minds.

*  *  *

And some random for your week? I know I spoke about this before HERE and here I am again. I want to let you know that I will have my Revelation 365 giveaway starting tomorrow. Want to know more? Check the link above and don’t forget to come back! Win this for yourself, for your girl friend, for your mother. Win this to change your life. To reveal you. Change your future.

Happy Monday, Reader!
love,

8 Comments

Filed under Marvelous Monday

Marvelous Monday 2014!!!!

HAPPY NEW YEAR!

Now that’s out of the way, onto our usual MM post (thankful, dwarfism, random)… Hold onto your hats. It’s gonna be a long one!

This week I am thankful for the 2 weeks Addie and I have had with Dave. Yes. TWO weeks. We left for Philadelphia on the Saturday before Christmas and we got back to RI the following one. Dave headed into work for Monday and half of Tuesday, had New Year’s Day off, then Hercules dropped some snow on us and Dave was home Thursday and Friday. As he heads into work today, I hope he feels the relief of being back to a schedule.

#aisforadelaide #hercules #newengland #snowstorm2014 #blog #asnowday in the Martinka house

Since his time off I have not gotten out of bed before 9am. Most days, not before 10… and there were a few 11′s in there. True story. I ate a hot breakfast almost everyday. I showered more than twice a week. I dried my hair, by myself. I did my nails, put on a face mask or two, deep conditioned my hair, read half a book, caught up on reading some of my favorite blogs and resumed some semblance of a daily workout. This refreshing end/start to the year(s) was so important to getting my head on straight… and brings me to other things to be thankful for- like the way Dave has changed and his awesome boss.

Spending time alone with Addie when she was an infant was hard for anyone but me- her sole provider of food and the one who understood each cry and sound. Now that she’s (incredibly) vocal, understands requests and direction and eats pretty much anything that’s not nailed down, I find myself alone when Dave is home. Off on some adventure, Dave steals Addie while I sleep to make food, run errands, or read stories in her bedroom. We both give each other the eye in some strange competition of Who Will Be The One She Wants to Put Her to Sleep Tonight. When she’s hurting, Daddy can heal her pain and when she needs snuggles at night, she often begs for Daddy to rescue her from the crib. While it is nice to not have to get up at 4am, I’ve found myself pushed to the edge of the bed, sad. I miss the days she needed me so much.

#aisforadelaide What happens when Dave doesn't work #blog

Then there is the look. The look of peace and warmth. It’s what Dave’s face looks like, even at 6:30am when hungah spews over and over from the mouth of a half-awake toddler into the open space of our room. When she cries waahwaah hungah nanaaah and he hops up and asks, “you’re ready for breakfast, Bug?” There is the look of total contentment. Whatever happens to a woman to feel the love she does for her young happens to a man, too. I’ve seen it first-hand.

#aisforadelaide #blog #weekend

I’m also incredibly blessed that Dave’s boss recognized that his employees come in by train from Boston and from 50 miles away by car, and decided to cancel work before the snow hit. With a few calls and some research, Dave stayed on top of the tail-end of his work week from the safety and warmth (and yet, drafts?) of home. For a job he stumbled upon with a start-up just 3 years ago, his career is blossoming in ways we never could have foreseen.

*  *  *

And so she grows. No really. I just wrote about this on a post of the same name: AND SO SHE GROWS, AND SO SHE GROWS. If you know Billy Joel, you will see my play on words from And So it Goes, and you may recognize the true heartache that comes with watching your child grow up mature. When Addie was diagnosed, we were warned about all the things she would never do and we were told of all the milestones we would miss. We were given predictions about her height and told she had to be on a hard surface always and most toys were a no-go and her balance would be bad… and so on. And after all that, I was overwhelmed and sad. We got rid of bouncers and carriers and sleepers. I found toys that were good for her, but not always mature enough. And I didn’t know where to go. As a new mom to a special needs child, I wish I’d known all of THIS.

But I didn’t, and I wasn’t prepared for a doctor to be wrong. But she was. Not because all babies with dwarfism do walk before 36 months, although many do, or because she’s not as small as I once believed she would be, or that she has decent balance. No. I wasn’t prepared because I got lost in a negative world. I don’t always see Addie as growing up… she doesn’t always gain an up, but she does grow in her intelligence, in her beauty, in her love and understanding and in her compassion. Initially I was worried I would hinder her into a sheltered life- one where I would hide all the bad. And becoming CPL didn’t help that fear. But then I saw. I saw her say “HI!” to everyone she meets, and wave with an exuberant “BYE PEOPLE”, as we exit any given location. I have witnessed her love, as I cook dinner and she reaches around my leg with a hug and a pat and whispers love you, mama so gently into the back of my knee. She loves me, without prompting or pressure, without even seeing my face, she buries her own into my leg and expresses her own emotion.

Do I protect her? Yes. Just as I will put a helmet, and knee and elbow pads on her to ride a bike. Just as many parents do. I didn’t wear knee or elbow pads and my helmet surely did not fit as well as they do now… does that mean my parents didn’t care? Am I just over-protective? Should she never ride a bike?

I could wrack my brain forever. I could worry about all the things you might think of how I parent, or how your neighbor might feel about me, or that dude who anonymously comments on my posts in the most negative of lights. But then, I wouldn’t be parenting, I would be absorbed in my thoughts about everyone else’s thoughts. So, let’s call it a truce. Let’s make a pact.

This blog was started with the intention to education about dwarfism, but if I focus on dwarfism alone, I will alienate myself and you. I will become obsessed, immersed in so many details that I will come to define Adelaide as a person with dwarfism, and not just see her difference as a part of her. I will come to define all people with dwarfism as just that, and if I do that, I will only see myself as a white woman. That will be who I am.  But it’s not. And so, this blog will continue to educate, advocate, spread awareness and push buttons. I will share stories of change and some of adversity. And here’s the best part: I don’t care what you think. While I would love your support and hope you stay to read more posts, what I crave is equality. For my child, for your child. I seek name calling, bullying and fear of the unknown to become a thing of the past. Ask questions- all of them. I want to answer. I want to know your fears so that I may assuage them. I want you to know what terms are accepted to call a person with dwarfism, and I want you to know that you do not have the right to dictate what others feel. Neither do I. On this blog, the m-word will not be tolerated, whether you’re speaking of pickles or humans or anything in between. The word? Midget. And that’s the end. Those are my feelings, on my blog that I write.

So, I won’t judge you, on your blog, should you choose to write one, and you will not judge me.

x_______________________________________________
      emotionally sign here

*  *  *

You’re still with me? I hope so!

I wanted to recap last year’s resolutions (only 3), which I found when I named my resolution post this year: THIS YEAR, I RESOLVE. Somehow I picked the same name, two years in a row, without trying. I guess it’s a series, now!

From last year’s POST:

1. Be nice (to me): Yeah. That. Well… I am better, and I don’t bash myself in front of Addie, ever, but recently I’ve noticed my sweet girl pointing to the scale and saying, “mama.” So, clearly, I still need to work on that. I wish I could take the scale away, but I truly believe it is useful- especially for long runs. I weigh myself before and after to make sure I am not dehydrated. I also check my weight more often than I should, but now I need to be aware of not doing this while Addie is awake. I think this is something many women need to work on, and clearly I am still trying to justify my need for a scale. Regardless, though I am nice-r to myself, in no way am I nice.

2. Know when to hold ‘em: So I still like to fight, but Dave and I are good about holding our tongues and I try to not speak to him in sarcastic tones because I truly do not want Addie to pick that nasty habit up! This is something I am still working on, but I think I will always have to be conscious of my words and actions as I’m a bit of a sailor-mouth with a temper.

3. Earn it to own it: Nailed it! I took time for myself each day to write and came up with 269 posts last year. This year I aim to write posts with just as much heart as ever… and add some time to take care of my fitness goals, too!

So there it is… Monday! I hope you have a beautiful week, Reader!!

xo

30 Comments

Filed under Marvelous Monday