Tag Archives: Facebook

What is work?

I get asked… what is work for you?

Work for me is finding, sharing, linking, SEO, pushing, asking (begging), repeated emails, on-call 24-hours, it’s coding and embedding and no-following, SEO, it’s commenting and hashtagging, it’s researching material, taking pictures, editing everything under the sun, being up-to-date, SEO (did I mention that, yet?), it’s hoping that you’ll like what I write/make/design enough to share it or see more about it for yourself, holidays spent at a computer and late nights drowned into early mornings. It’s Facebook, Google+, Instagram, Twitter, Pinterest, Facebook Fan Page, Klout, analytics, LinkedIn, groups, memberships, clubs…

More than anything, work for me is rewarding. Not in the classical, monetary way (for me), but in a way that lets me bring you, Dear Reader, things I want to share with you. Reviews and recipes I really love. Stories and snapshots of life that I hope inspire. And the truth about being your average family, even in a special needs world.

That’s work to me.

As I embrace this holiday weekend, thankful that Dave is home with us, I also take into account the blessings that include the opportunity to cultivate my mind, spirit and writing into something that I hope brings joy, knowledge and a respite to the day to all of the people who stop by! Thanks for being one of those friends.

 

… sometimes when I work, I play! Getting the chance to prepare to show off Camille’s soon-to-be arrival!

   

 

 

 

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Filed under Fitness, Parenting/Family/Lifestyle, Pregnancy/Birth

Damn it.

I love all the posts about Facebook and social media in general where we are reminded that what people post are just a glimpse into their day. The perfection we see, even the vacation pictures, one after another, where everyone is smiling… those are just a few. There are surely 100 others of grumpy faces, naptimes avoided, drinks spilled, sand eating, falls. You name it.

But what we share are only the best things. Right?

#aisforadelaide #SOMEDAYS #mostdays #parenting #love

Not for us. Of course there are bad days- medically speaking, and recently an integral part of our team, Addie’s PT left for another position and I’m really frustrated, but there are other times throughout our generally awesome days that suck. You know what happens when I drop a glass and it breaks on the floor? I say, “damn it!”

In fact, this happened, then a few days later Addie tapped a key and deleted my work. Another time she drew all over my leg with a marker and then in a library book with a pen she got from my checkbook (yes, I still balance a checkbook). After each assault on our otherwise awesome days, I came out with a “damn it.” Even under my breath, I knew she’d heard. “Darn it,” I would quickly correct myself.

But there she was. As she grabbed for my keyboard, I said, “NO, thank you,” and she spits back at me, “Damn it.”

Clear as day.

Hooray! I’d done it. I’d taught her one of the things I actually hate about myself. My language. It’s colorful, shall  we say. And as the weeks have passed, we’ve worked more on “darn it” (for both of us), as well as just calming down about situations in general. A broken glass isn’t really a big deal, marker happens, Ctrl+Z can undo whatever you just did- including un-deleting what your toddler has just unwritten!

All of this really struck me as it reminded me of an awesome post my friend Wendy wrote HERE about hugging and not yelling. We can’t erase what we’ve done in the past, but we can certainly move forward. I myself am a yeller. Dave is calm, level-headed, and a problem solver. I am reactive and while I usually find my way, it’s easier for me to scream into a pillow before evaluating any situation- my counterpart does not explode, even into a pillow, and sometimes we just confuse each other. But when it comes to our children and how we want to interact with them and each other, we both agree that I need to find some zen and, in turn, perhaps he’ll find a fire under him in some situations.

Parenting is learning something new every day. #aisforadelaide #parenting #huggingnotyelling

So where are we now?

Well, gosh darn it, I can tell you that there are a lot more hugs around here. Between Dave and I and more peppered throughout the day for Addie, too. I love hugging on her, but there are days that I find myself in such frustration, that we both end up yelling at each other. I have found myself looking up from whatever I am doing (cleaning, setting up, cooking, working) seeing her face and realizing she  just wants me. As I hold my hands out, she rushes into my arms and nestles her head into my neck. Her little voice purrs “I love you” and leaves little kisses on me… we’re both immediately calm. I love that moment- feeling anger and frustration physically leaving my body. Hugging her to get a result of calming the storm instead of yelling, creating a bigger storm and then ending in tears (both of us) and inevitably a hug to calm down. Going right for the hug has been the best move.

I feel like a better parent, damn  it!

Taking time out to be a better mom for my family #aisforadelaide #huggingnotyelling

So, are all parenting moments perfect? Surely not. We have tears and nos and pushing (Addie not us!) and falls. There are days where we’re tired, nights where we’re wired, and everything in between. The moments we don’t share, but we embrace, cringe and learn from are becoming different for us. There are more times of saying “OH NO!” when something unexpected happens- there are discussions about solving issues, help cleaning, and hugs after. Taking the time to not only teach our children, but ourselves, better coping skills, is such an important part of growing up- something we’re never done doing, I suppose.

Hug it Out #aisforadelaide #parenting #hugitout

So here’s a glimpse into our life- the not-so-pretty and certainly non-worthy of a Facebook status update, glimpse.

How have you grown with your children? Have you thought about hugging and not yelling? What did you accidentally teach your child?

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Filed under Parenting/Family/Lifestyle

Marvelous Mondays!

In the spirit of starting new things for the New Year, I am starting Marvelous Monday! This will be my weekly thankful/educating post.

I found that during the month of October which is Dwarfism Awareness Month, I was posting facts about Addie and dwarfism, and people were amazed and eager to know more. This is  a GREAT thing, as I feel super excited to begin the year helping everyone learn! I have always loved teaching and tutoring, and I adore my baby girl- what better way to spend my days? For more info in the meantime, please visit Understanding Dwarfism on Facebook or on the web.

I also spent November thinking of things I was thankful for each day. While it is simple to find things I am thankful for, because I was only listing for 30 days, I wanted them to be spectacular and “deep”. Things like: I am thankful for Dr. Bober and his team at A.I. DuPont in Delaware. But, I also want to shout: I’m thankful for Sharpie markers. Those things are great for everything from labels to marking hands at a show (cheaper than paper tickets). And so, each Monday, I will share my thanks.

Lastly, as much as I LOVE my baby girl and she is my whole world (Dave and Carter and Morgan, too), I would love to have another baby someday and I don’t want to be so focused on Addie that another babe would feel sadly blog-less. I love this site and I hope to grow my followers and readers, thus I will also add one “random” thing in each MM post. Something like an awesome new recipe I tried, or great news, or a good movie I saw (I never go to the movies, so don’t count on that!).

I am hoping that my Monday blogs are something other bloggers may want to join in on, too! I truly want to give a light start to everyone’s week, while offering up some information about something people don’t know a lot about: Dwarfism.

If you have a child or family member you want to spread the word about, or some facts and information the public needs to know, I ask you, fellow bloggers, to share! Anything from autism to dementia, a charity you think needs a shout-out or a dog that needs rescuing. The young, old and everyone in between.

I hope everyone is having a Marvelous Monday! First post next week… and I already have a topic in mind!

If you have a question about dwarfism or Addie, please post in the comments or on Addie’s Facebook page. I will be answering weekly in my MM posts.

Please… keep sharing:

I am still not in contact with Gedney Foods, but have no fear. I have BIG plans for this project :)

Addie is thankful for snowsuits!

Addie is thankful for snowsuits!

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

Does she have what it takes to be…

The next top model?

I think so.
It brought me to the research of if others thought so, too.

In August I posted on Carter’s wall on Facebook:

Dear Carter’s,
My name is Adelaide (A is for Adelaide). I am an achondroplastic dwarf. My mom has been struggling to find me clothes that fit and trying to sell the clothes that are too big for me so she can get me new Fall clothes. My dad works really hard, so mom spends sparingly, but says I can’t wear summer clothes in November!
This is my favorite outfit: from your store, INCLUDING my hair clip (except my shoes).
I am 4 1/2 months and I wear newborn clothes. I wasn’t diagnosed until I was 9 1/2 weeks and my mom and dad are average height adults, so my mom had taken all of the tags off my stuff and washed most of it: she never thought I would be a dwarf- but she and dad love me no matter what!
The employees (especially Deb) at your Cranston, RI store have been wonderful to me, and mom can’t wait to go back and buy me my Christmas dress! Thank you for offering newborn separates in the same styles that big kids can wear. I am growing smart and strong, but not so big, yet. It’s great that you have such awesome styles and great prices to help my mom outfit me (and save dad a few hours at the office).
Your biggest fan,
Adelaide (Chelley Martinka and David Martinka, too)

When it comes to being different, I know things aren’t easy, but I wanted to know if there was opportunity and I came across this wonderful article about people with Down Syndrome in the media. In it, Model Club Inc. is mentioned. I dug further into Model Club and came across an open call in our area. I brought Addie, explained that Addie is a little person, but no one cared. She’s really cute, said the woman checking us in.

And so, Addie is being represented. We have no jobs yet, but I know that Addie is beautiful, and I’m hoping that she can help promote awareness in the media about dwarfism. There are opportunities that have presented themselves to LPs in the past, and I hope that they do so for Addie, too (not just for her college fund); like this: Oz The Great and Powerful! In Trailer 2, we know Mikey… he is at 1:50, back left stack, in the middle in the blue vest!  Addie gives a special shout out to him (and his lovely girlfriend, Jess)!

Onto her career? Maybe… maybe this will just be some fun she and I have taking silly pictures. Either way, she’s my top model. Her first Baby Book Card:

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Filed under Community

Support our growing community!

My Delaware blog is coming [slowly] along. I am doing my research and trying to use lots of visuals for learning purposes… not just to ooooh and ahhhh about how adorable my baby girl is. With that in mind, I wanted to help support our ever-growing community in British Columbia (and get you readers some new material)!

A mom reached out for me, and as this is a month of THANKS, I wanted to write that this year, outside of the most beautiful birth experience and the perfect daughter I now have, I am most thankful for the wonderful community that has supported, educated and backed me up since we learned Addie has achondroplasia. Without the LPA and multiple parent resource connections on Yahoo! and Facebook, I know that I would still be in the dark about a lot of things, and told by other parents that I am just paranoid. Having the love and understanding of other parents, learning about what other people have experienced, and their education about dwarfism- I can’t say enough good things. These people and their word of wisdom are priceless to me.

For this reason, I want to spread my joy and give some good ‘ole shout outs to help a new friend! Little People of British Columbia, or LPBC, is participating in a contest. Winning would be a great new beer creation for the masses AND some funding for their organization! Thank you to Tammy, for spear-heading this wonderful time for LPBC! Check out her blog Not Just Another Mom and read more about LPBC and Tammy’s son Declan. When describing the contest, she said it best:

We’re a small group with very limited resources, but a lot of heart. We have been shortlisted as a finalist with a very cool brewing company for their ‘2012 Benefit Brew’. The 10 finalist organizations are going head to head in an online vote, which will decide the winner. The winning organization will partner with Phillips Brewing to create their own custom beer and the entire proceeds from the sales of that beer will go to the winning group. Last year’s winning organization received over $10,000, which would be HUGE for us.

Custom beer AND helping an organization grow to fruition, educate others, and offer wonderful new resources about dwarfism? Sign me up!

Voting began yesterday, but you can start voting and SHARING this page and the link to vote today! Please remember to vote once a day until it ends, November 18th.  I will check back with Tammy at the end of the month and see how our community did. Please open a tab on your computer and leave it open so you remember to vote everyday. Pass it on to your friends on Facebook. Link it to your blog. Your help supporting, encouraging and voting for LPBC to achieve funding in this creative way means a lot to me.

I am thankful for you.

VOTE HERE!
FACEBOOK!

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Filed under Community, Educate/Adovocate/Make Change

Facebook …and a prize!

Hello readers.

These past few days have been some days of reckoning! I love my baby girl and sometimes taking the time to look inward and find my own strength instead of leaning on others is extremely important. Having so much love and support means the world to me, but I need to remember my own two legs, too!

That being said, let’s get some education out to the public!!! Enough is enough! There are so many negative things in the media about dwarfism- even just the use of the word midget. I said it. Once. And once is enough. I don’t care who thinks it’s an OK word to use to describe someone or themselves. It is NOT OK with me, and I won’t have the word used to describe my daughter. The more people who know about and understand dwarfism, all the many types AND  that little people are just as capable as you or me, the less stereotyping and harassment will be out there.

There is a wonderful website I want everyone to help me promote… please visit the page and LIKE! their Facebook page. Spread the knowledge!

After you like their page and Addie’s page, please comment on this post. I will be doing a random drawing in September and I will post a blog with the winner! Of what? You may ask: a $25 Visa Gift Card to use however you please. SPREAD THE WORD, GET PAID!!!!

So, please go LIKE and LIKE, then post and… KEEP READING and spreading the word to get your payday!

Just an image to brighten your day <3
me loving on Adelaide

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Filed under Community, Educate/Adovocate/Make Change

Is it the weekend, yet?

What a roller coaster week! If I never hear the word “no” again, it will be too soon.

I’ve spoken with numerous people, and by the blessings of the Universe, our case is in the Research Department of UnitedHealthcare. I’ve spent hours on the phone, mostly on hold… and when I’m not on hold, I’m spelling ” dysplasia” and “achondroplasia” and “Adelaide” for someone who doesn’t understand why she needs to see a specialist.  A woman actually scoffed at the idea that Addie needed to go “all the way to Delaware”. If that wasn’t insult enough, she asked me if I could get an appointment in Delaware, was I willing to travel. What kind of question is that? OF COURSE I’d be willing to travel- she’s my baby! I’d swim across the English Channel with her on my back, if need be.

So, this week was very frustrating, and I’ve wracked up minutes upon hours of cellphone use…

And I’ve made more connections and friendships  than we could ever hope for.

There has been a love and outpouring from a community, better known as the world, to help Dave and me with making sure that Addie can get the care she needs.  Word-of-mouth, Facebook, website shares and emails have helped us raise funding so that we can get Addie to NemoursAlfred I. duPont.  Knowing we will need to put down a deposit to even make an appointment and pay for a majority of the testing before we leave was making my stomach turn, but I took the advice of a few moms and posted a fundraising website.

And there was an outpouring.  Not just love from friends and family, but kindness from total strangers- people following Addie’s story and loving her without ever meeting her.

This beautiful baby cannot express her thanks, but we, the Martinka’s want you to know that we will forever remember everyone who helps us along the way.  We know that we will always need someone to talk to; ask questions or share a hug, but we are hoping to pay all the support we’ve gotten forward. We hope to make a difference for everyone out there who has no insurance, or insufficient insurance. We want people to be aware of dwarfism, and know that each of our children need to be cared for individually- and though they may need different care than other children, they have just as much right to it!

We will share the story of the first few months of her life with Addie over and over as she gets older. She will know the love that she has surrounding her- those who have never met her, those who have yet to and those who have kissed her little toes and smelled her sweet breath- thank you.

It’s a small blessing that the weekend means no one will answer the phones or give you an answer to any questions because the right person “isn’t in the office”, so here’s to the weekend. Here’s to community. Here’s to banding together for our beautiful Adelaide.

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Filed under Community, Educate/Adovocate/Make Change