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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