Tag Archives: awareness

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

Hallmark Moments

I received an email a few weeks ago from Hallmark (I LOVE Hallmark), but I discarded it. A contest to draw a charm that will be made into one they will sell. Drawing? Me? No thank you.

But, then I looked at all the charms I had, and a book to circle ones I want. I saw a lot of awareness and I was jealous. There is a pink ribbon (three different ones), a yellow ribbon, a puzzle piece for autism, a block for St. Jude, and the list goes on. But there was nothing for dwarfism. So I thought I don’t want another ribbon out there. I don’t want to be associated with something that needs a cure. I want to wear my awareness proudly on my bracelet. I want to show off that I love Christmas, I have a baby girl, I am married, I have a (smelly) dog and I know someone with dwarfism. Some one very close. I want my baby girl to have more representation in the world than she currently does.

I want Hallmark to help us raise awareness!

Dwarfism Awareness hand

This is my hideous drawing. I know what you’re thinking: you can’t even trace your hand! It’s true. I am only good at drawing words on a page. If you were expecting art, you are looking at the wrong woman. But here is my idea- my submission. You can submit two drawings, but I only need one. I need the beautiful trident fingers of our babies wearing a green bracelet to be around my wrist. I want people to ask: what is that charm? What does that mean to you? I want people to think it’s interesting. I want to gift it to others. I want to launch more than green rubber bracelets (that don’t always look fashionable). I want everyone to have a charm that they can look down at and smile; think of Addie, or Hailey or Knoah.

Thank you, Hallmark, for giving me this opportunity. I hope I we win!

#educate

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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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What’s the deal?

I went to the doctor, and while the details do not need to be discussed, I’m not sure I’ll ever go back to that one.  I’ll keep this brief, but let’s say my decision is not because of me, per-say, but because of Addie.

The nurse was brief and dropped my file twice. She didn’t write down what I had told her (questions I’d had), and was extremely curt. Then the doctor. This doctor (midwife) asked a lot of questions about Addie, finally landing on her pediatrician (this is my appointment, yet no questions were asked about me). When I told her, then said and she sees a geneticist, the look of relief on her face was palpable. I felt the room heave itself out of worry. If you had a question, why didn’t you just ask? I don’t like to dance- literally and figuratively.

She said, “I was waiting for you to say something.”

She then asked a lot of questions, like “is achondroplasia like dwarfism?” I said, “it is dwarfism.”
I did my best to educate, but with the constant comments about how she had a poopie diaper (she didn’t) and how she could tell she was pushing (she was rubbing her lips together and humming- which she does to make her gums feel better), I’m not sure this person is qualified to know anything about babies… or about the parts from which they burst from.

Perhaps I just have the wrong midwife, but I’m starting to feel like everyone’s bedside manners have been tossed aside. What happened to care and concern for your patient?

Addie is beautiful and I WANT to answer questions, but I will not circle the bowl trying to drag the real questions out of people.

PSA: PLEASE ask! Parents want to educate for the sake of their sanity and for their child to grow up in a knowledgeable world!

October is Dwarfism Awareness Month! Please ask how to get your state to recognize it!

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You Educated Yourself AND Won $25!

Thank you so much to Lynn- our winner- for educating herself and others about dwarfism! Lynn is mom to a LP, too!

This cute face wants to thank everyone who joined in the effort to educate people about dwarfism, and will continue to do so!

You Liked AisForAdelaide and Understanding Dwarfism, and that won you $25! (I’m sure you already knew this, as I emailed you, but I figured I would share it with the world!) I am quite excited for all the LIKEs we received, and I hope that everyone continues down this path of education! Becoming aware is the first step to understanding more about LP.

October is Dwarfism Awareness Month and I am hoping that Lynn, and you, my lovely readers keep spreading the knowledge!

A few things to remember:

* There are over 200 types of dwarfism. Achondroplasia (what Addie has) is the most common.
* Over 80% of people with dwarfism have average height (AH) parents and siblings.
* It is very rare to have any type of mental impairment with dwarfism- I made this bold because many people have come up to me and shared their apologies and compared her to being autistic. When I say many, I mean more than 10. While I do understand people are trying to learn, please know that dwarfism is not related to autism.
* Preferred terminology: “little person” “short stature” “dwarf” “having dwarfism”. The word “midget” is slang, antiquated and will not be tolerated by myself, my husband, my family or anyone we know.
* People with dwarfism are able to do the same things as average height people, perhaps with some adjustments- but just as capable.

Please know that we are not looking for a cure. There is nothing wrong with Addie, or any other child or adult with dwarfism. She is beautiful, happy and perfect. Simply, like other little people, she is just small. She may need surgery in the future, but many people get surgery. A lot of people ask me if there is a cure, there isn’t. How can you cure her from nothing?

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Painful

A lesbian and an alcoholic walk onto a stage set…

Sounds like the start to a terrible, demeaning joke.
It is. But no one was joking about homosexuality, or being a drunk.

I hate to focus on the negative, as that is precisely what I’m trying  to overcome, but when I see this kind of train wreck, it’s hard to look away. It’s even harder to explain. There are “educated” people out there who believe themselves so righteous that they can mock another human’s right to live a normal (see: average) existence, job skills, sexuality, abilities and height based on their [alleged] phobia?

Build a bridge, ladies… then jump off. Please. For the sake of man kind, both tall and small.
Aren’t there enough self-fulfilling prophesies out there? Are there not enough people on talk shows that already hate themselves- so much so that they target others?

I find the best comedians, the ones with real talent, are the ones that can bring you to tears not making fun of a specific group of people. Rosie, you’re gay. Yay! for you. Chelsea, you’re a drunk. Yay! for you. Let me offer you both  a medal of honor. Both women have their differences out in the public eye because they chose to share. Addie and thousands of other little people never have the option to hide their difference if they want to. Walking into a room and choosing who to let in on an intimate detail of their life is not something they will decide upon, yet people choose to  mock.

Dwarfism awareness is being adopted by states, albeit rather slowly, and yet there are still such nasty people. It’s wrong to mock the gay community- I agree, wholeheartedly. And alcoholics should be nurtured to gain control of their disease, although if self-loathing jokes are what helps for now, good luck. No one can make an addict go to rehab. Does the community consisting of little people, their parents, friends, relatives and peers not deserve the same respect? Live and let live.

Let me tell you a secret, ladies. Addie, and all the other little people you so fear, can in fact get jobs; the first female president with dwarfism was just born, you see on April 17, 2012.

And thus, I have seen this video.  I actually viewed it for the first time the day Addie was diagnosed, sitting in my chair-converted-bed at Hasboro, holding my sick little girl and wondering what this unrelated, lifelong diagnosis had in store for her. Being a new parent is challenging. Having a sick baby is hard. Being in the hospital with a sick child is painful. Having your whole world (ultimately, your child’s world) change in a day, while in the hospital with a sick child is mind boggling.

Perhaps spreading this video is promoting its evil, but my true intentions are to show people who have similar feelings how ridiculous they sound coming out of the  mouth of others. There is a slew of videos lashing out at Oprah’s network for airing this, as well as to Rosie and Chelsea Handler- please search them, and heed their words: this video is ignorant, does not and will not ever describe little people and will not be tolerated anymore.

Concluding my rage and sadness, I watch Addie’s breath come in and out and her back rises and falls. Her chest puffing out into mine as she sleeps on me. She’s not your average  baby-she’s so much more, and I am blessed to have her. I breathe in as I gently kiss the top of her head, smelling her freshly washed hair, smile and breathe out.

Being surrounded by so many good people and a new community of friends- I feel sorry for people like Rosie and Chelsea. Not for being gay. Not for being drunk. Stupid. I’m so sorry they’re stupid.

And, for some inspiration, strength and a good education, check out this amazing 10-year old, Alex!

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