Tag Archives: thank you

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!

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Marvelous Monday

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

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

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

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

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

*  *  *

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

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

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

*  *  *

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

This is it #aisforadelaideblog

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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.

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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,

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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.

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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

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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

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Some Thanks are in Order!

So really, my WordPress Stats come in and I am shocked. There is nothing more to say than:

THANK YOU!

Thank you for finding me, no matter how you came…

How did they find you #aisforadelaide #2013stats

 

Thank you for reading, following, sharing, tweeting, retweeting, commenting and posting time and time again. For all the likes and conversation starters. For the kind words and feisty remarks. While there were 211 posts after I took over my own webpage, there were 58 before that in 2013! That’s right, I blogged 269 times last year! For all of you who work out of the home- that means I worked 53.8 weeks of full time work- 5 days a week, no holidays.

My Numbers #aisforadelaide #2013stats

Thank you for showing me so much support and love:

 My Top Commenters #aisforadelaide #2013stats

Sharon, Shell, Melissa, Mary and Kristin. Thank you for all of your love and support this year! Here’s to 2014!!!!

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The Last of the Marvelous ’13…

It’s not like MM will come to an end, but it is something I committed to for a whole year and DID! This first year coming to an end feels bittersweet, and my decision to continue is a true testament to your commitment to me- to learn, to guide, to discuss. Each Monday I wrote a Marvelous Monday post… most in the same format… and shared with you, Reader. I want to thank you for sticking with me, and let you know that I appreciate all that you do for me. From your readership to your sharing, comments and personal messages- I appreciate it all. Whether you stumbled upon this page, are here for a giveaway or want more information about dwarfism- thank you.

#aisforadelaide #happynewyear #2014 #blog

Addie, Dave and myself wish you the happiest of years ahead and hope 2013 was all your dreamt and more, and 2014 is good to you in so many more ways.

Here’s to the next year’s journey of Marvelous Mondays.

Love,

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Can’t You Just Go Back Inside?

There’s nothing like locking your keys in the car…
while it’s running…
in 29* New England weather…
and you’re out with your child.

Why do I pay for AAA? Because they have never let me down!

This is brief, but I wanted to give AAA the shout-out they deserve. From initial phone call (I wish there were not a million prompts to get to someone) to the time I was in my car was about 21 minutes!

Here’s how it happened:
After a class at our local Jewish Community Center, I walked briskly to my beautiful Subie waiting for me about a block from the entrance. It. Was. Freezing. I huddled Addie’s head into my shoulder and pressed the unlock button once before opening the front door and popping the key in the ignition to start warming it up. Pushing the unlock button on the door’s panel, I got out of the car, closed my door and opened the back door to put Addie in her seat realized I had pushed the lock button on the door and had just started my car and then locked myself out.

AAA_Logo

Thankfully I had my bag, with my wallet containing my AAA card in it, still on my shoulder. I put Addie down and quickly called the number on the card. After explaining that we were locked out of a running vehicle and where we were, how old Addie was and asking if we were safe, the woman asked: Can’t you just go back inside to wait?

I wish.

No matter where we are in the world, there will always be people who want to steal. When your car is running and you are no where near it, locked or not, someone in Providence would be glad to break a window and take that car off your hands. Being that we were too far form the entrance for me to watch over the car, we were stranded on the sidewalk. Not a problem, the woman stated, we will get someone out to you soon. With that she confirmed my phone number and we parted ways. Dispatch then called me and told me someone was on their way, about 5 more minutes. And there it was. Within 17 minutes AAA Fleet Driver out of Providence 10463 was there… but he wasn’t just a driver.

He pulled up, put his 4-ways on, jumped out of his tow truck and opened his passenger door. Please get in my truck while you wait, he said. I turned the heat on high when I got the call- it’s nice and warm for you. We did as instructed. I hoisted myself into the truck and was hit by a blast of hot air. It. Was. Glorious.

As I warmed our 20 fingers in the vents, I watched the driver work his magic- realizing he was in a full jumpsuit and jacket, he must have been sweltering in the truck, but knew his charge would be cold. Damning his own comfort for the-idiot-mom-being-me, we were now sitting in the heat for which I’d been longing.

Within minutes, we were back in our car, warm and safe… but I was feeling restless. I never carry cash on me, so I had nothing to give my AAA hero. I know the drivers get paid, but I have never not tipped a person who rescued me (unless it was Dave)… searching my car, I remembered my emergency $20.

You know that $20 you’ve been saving in a hidden spot for years? For me it had been since Addie was born. I always had a $20 for the most dire of situations… none that had presented themselves in her lifetime, until now. This gentleman, who came to my rescue a few weeks before Christmas could certainly appreciate an emergency and stupidity and mom-brain that I’m sure he’d seen 100 times before, but who never passed a judgmental look or quip, who helped me into my car and stayed with us until Addie was buckled and I was in the driver’s seat deserved something more for his time. I felt myself grip the fresh, crisp bill from my hiding spot and leap out of my car. I raced to his window before he put the truck in gear, and as he rolled down the window I blurted, “You really saved me. Thanks.”

As I buckled myself into my car I face-palmed myself. A $20?! Michelle Kathryn Joanna Worth Martinka! But I saw his smile as genuine as one could be- the same smile he gave me when he looked up after popping the lock. He was satisfied to have helped someone go on with their day, to get out of the cold, to have kept a child out of harm’s way. There’s always another emergency $20 to be tucked away, but the opportunities we have to show our appreciation to others are often fleeting moments. Whether it’s a love letter to you spouse, a special dessert for your child, a text to your sister or your last $20 to the AAA driver, don’t miss out on your opportunity to not just have, but to give, thanks.

Now this holiday season AAA has literally saved us from the cold and saved us cash on gifts we get for friends and family, like tickets to the movies! True story… I hope you have a membership, too! Thank you, AAA. I’ve been a member since 2000, and will be until they take my license away! Happy holiday travels, everyone- don’t forget your AAA card.

xo

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Marvelous Monday… the most thankful version

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Marvelous Monday, Indeed!

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Filled with Thanks

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