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 ❤
me loving on Adelaide

Pardon my French but: &odd%$n you, Teen Mom 2

When a headline begins with Teen Mom Leah gets more bad news about baby Ali, I feared the worst. Let’s be honest, it’s trash TV, but I cannot help my freakish addiction to these sad teenagers who can’t seem to get their stuff together. I am no Mother Theresa, but seriously ladies, what the heck is going on in your heads? And why, Netflix, did you decide to have this in your instant queue option?!

Watching episode after episode of Leah wondering why Ali is not keeping up with her sister breaks my heart. Her emotions seem tangible and I can taste her tears as my own. But reading these words below, makes me feel sad. Sad for me. I knew Addie had rapid head growth- I feared hydrocephalus. At one point, at Hasboro, I said to my husband: “It doesn’t matter what the doctors say, I’ve already diagnosed her as a hydrocephalic dwarf. So I’m  prepared.” And I was. I embraced the news that she is not hydrocephalic like a champ, and I will forever be attempting to navigate life for her as an achondroplastic. I love my baby girl, and I will never let her suffer.
From the internet:

Enough with the mixed messages! First we have Corey contrasting a camouflage cap with a neon T-shirt, then Leah’s geneticist is trying to scare all our happy away. Just last week we were celebrating baby Ali’s “normal” test results and first time standing; tonight Leah was told her young daughter might actually suffer from skeletal dysplasia — or dwarfism. Whatever her condition turns out to be (and recent pictures show a very stark contrast between Ali and her twin sister’s development), we know their coal-mining fairy tale does not come true.

Can we start with the word suffer? Addie won’t ever dunk a basketball in the WNBA, but I hardly think that she’s going to, or is, suffering from achondroplasia. It’s a diagnosis. An explanation as to why she is so “wee”, but she is amazing. She is beautiful. She is Adelaide Eileen. My child is a dwarf, but she does not suffer. In fact, she thrives- AND, she lives to tell George all about it!

There are a ton of issues with the multiple brief accounts of “Leah and Ali”, but my main “beef” lies with the suffering, sadness, fear, and delayed commentary. Addie is not suffering, and neither are Dave nor myself. We have no sadness, and no fear. We are aware of some of the challenges she may face, but we do not fear them. And as far as delays go, Addie is on track with the AH (average height) children, so we have no worries there. But, should she fall behind, there is a chart specifically for HER!

This is my PSA: being a dwarf does not mean you suffer. There can be many scary situations ahead for Addie, but there are an infinite number of possibilities for all of the amazing experiences that lay ahead for her, too! Good luck to baby Ali- may you be little or may you be big, you don’t have to suffer for anything.

EDUCATE YOURSELVES!

I didn’t know it would feel this way

Sitting with other moms, listening to the births of their children. Discussing how long and lean their kids are. How they are looking more like one parent or the other- growing like one parent or the other. Laughing and fantasizing about if they will be tall like daddy, or short like mommy. Commenting on how chubby their babies are getting.

I didn’t know it would feel like this.

I didn’t know I would revert inside myself. I didn’t know I would want to cry. I didn’t know that I would try to compare the length of their limbs with Addie and notice a 3 inch difference in leg length with a child 3 weeks younger.

I didn’t know the fear that this would bring up in me.

I love my baby girl, and she is perfect just the way she is- but I have to admit, I felt a pang of hurt. I didn’t want to be a part of the conversation. I wish that I could have gotten up and left the park, but I wasn’t angry. Just a little sad. The same sad I feel when someone asks me if she’s 10 or 11 weeks. Sad for the days ahead that will be difficult for her with her peers.

I was going to make a post similar to this, but I didn’t feel brave enough. Now I do. It’s an admission I have to make. Be it raw and unreasonable. This is not something I think about often, just passes through my mind when the topic comes up. It’s a conversation that I could join, I suppose, but I don’t know what to say. She won’t be tall like me, or short like Dave. She will be her own. I am incredibly proud, in a way. She will be Addie, and only Addie. She won’t have my lean (read: not skinny) or Dave’s athletic build. She will be short. Short like Addie. Beautiful like Addie- with a touch of mom and dad.

And so, I present:
Below is a post I wrote a few weeks ago that I feel comfortable sharing now.
Showing you my soul.

I don’t want to think they way I do, and although I’m sure it conveys as disappointment, it’s not. I’m full of awe of my beautiful baby girl. The way her eyes sparkle, her creamy, smooth skin and her amazing hair color- that I matched when getting my highlights done. Her little fingers and feet. Her smile is infectious and the dimples above her lips brings tears to my eyes. The way she turns her head to-and-fro, sticks out her tongue and squints her eyes- I’m sure the laugh is coming any day now!

But, I still wonder.
What would my daughter look like if she were of average height?

How many people just gasped? ‘X’ed out the window and vowed to never read my writing again?

I write of how people should not offend anyone, and here  I am, offending myself.
I’m so ashamed to be wondering this… but hasn’t anyone else felt this way? As an average height parent, baring my soul in each post to the readers following, is it OK to wonder? I feel no need to dwell, but I promised myself I would be honest when writing. I would give people something to read that may not always make them smile, or agree, or want to know- but it’s the truth. My truth.

Addie will hold her head high, no matter who she is more like. She will have passion, drive, creativity, sass and the power of debate that runs though both her father and myself- and she is and always will be our beautiful girl. She will get a bit of each of us, I hope- my fire and Dave’s calm to the storm- as well as my nose, pinkies and ears, and Dave’s lips and dark blue eyes.

There are people of all races, nations, religions, orientations and statures that are beautiful and not, so please do not read this as a fear of her looks. It’s just a wandering thought, not a lingering concern, about who she would take after more.

And with so many concerns, is a little imaginative thought so bad?

…imagine if she got Dave’s nose- now that would be a concern!

Early Intervention

Addie went to Early Intervention for her physical interview.  She automatically qualifies for the program based on her diagnosis, but they like to get together to check where her skills are.

She’s 3 months… what skills?

I began the interview by handing the therapists toys that she likes, as she was completely disinterested in the ones that they wanted her to track and follow.  The red and yellow rubber “toys” she presented to her looked more medical than playful; I was glad that I brought along a few of her favorites. Once she proved her skills there, we moved onto a few other things, then questions about her eating.  These confused me, as they were asking about how she takes pureed foods. I’m sorry… what? She’s 3 months- update your questions to coincide with what the AMA guidelines are for feeding.

After more noise making and eye tracking, a little bit of reaching, and a whole lot of “prayer hands” (where she holds her hands in a prayer-like fashion), the therapists asked if I could pull her up by her arms to bring her into a seated position, which helps check her abdominal strength. Um, nope. Have you people seen her head size, which we discussed at length, and how I can’t let it snap back? She holds her arms and legs up in the air, she’s working her abs, let’s leave it at that.

So, we moved on. Sort of. One of the last questions included me holding her, facing me, in a slightly seated position cradled in my arms. From this point, I would drop her back, “just a bit”, to see if she startles.

You want me to drop her to see if she still has the startle reflex, which I said she did? Trust me. She does. And I’m not about to risk her head flapping back to prove it.

In the end, it was a fine visit and I agreed to worth with a therapist to come up with a care plan, but for now, that just consists of monitoring her motor skills.

I provided the therapists with a copy of the most up-top-date chart of where her motor skills should fall as an achondroplastic, and let them know I expect her scores from now on to be biased toward these age-appropriate, according to experts in dwarfism, milestones.

As it is, Addie scored at 3 to 4 months for each group, except social and verbal skills, where she is at a 4 month and 5 month mark, respectively. This was no surprise to Mima (my mom) or Daddy, as they both know how much I love face-to-face communication, always making eye contact with people I am in conversation with, as well as the fact that I love to talk. And I do so a lot!

It’s nice to see that being sure to speak with Addie everyday, encourage her to engage us in conversation and always make eye contact with her, whether she is playing with a new toy, getting dressed and counting her snaps, or in between the lines in a story- we are enhancing her communication skills.  I hope that she can keep up with her motor skills, but even if she ends up a big behind from AH kids, I know that she will reach her goals!

I do hope to add a few things to her goals, like looking at her toys more, but she just loves the social interaction she gets from the people around her, often losing focus on the object at hand and choosing to look at the people near her… unless there’s a ceiling fan.

A BIG congratulations to our tiny little girl for making her milestones thus far, and being the little chatterbox that mommy is, too!

Is it hot in here, or is it just me

by Adelaide

Dear Mom,
Is it hot in here, or is it just me?

You always tell me I’m a bakery- full  of rolls. And you tell me to cook you some smiles. But I’ll tell you something: it’s too darn hot to bake or cook!

Instead, let’s try these fun things: community pool, walks in the park, chillin’ in my tent, Babies and Books, Baby Pictures , Story Time, mommy group with RI New Moms, or, my favorite, snuggling in the AC in the bedroom.

Til then, Mommy, I might not be cooking as many smiles, but I’ll always have a bakery full of rolls. It’s definitely hot in here… and I don’t think it’s just me, I think  it’s us!

Love,
Adelaide

____________________________________________________________

On a side note…

Achondroplasic children have lots and lots of rolls and tend to run at a hotter temperature. Rolls and sweat and humidity, OH MY! Addie and I have been doing some good things outside of the house to stay cool, but darn, it’s hard when she breaks a sweat going from the house to the car.

We have been using powder in her pits and wearing minimal outfits when we venture out and it’s working great for us. We also LOVE to go grocery shopping each day for two or three things we need for dinner. While there we walk up and down each aisle to enjoy the free air conditioning and learn about veggies, sauces, baking, spices and sauces! Learning and keeping my kitchen (baby) cool is always a plus.

And so, in response:

Dear Addie,
I love you so much, and you are the best chef and baker I’ve ever met.

Your rolls are so delicious and your smiles so tasty.

Please stay in the kitchen just a bit longer, so Mommy and Daddy can enjoy all your yummy treats.

Love,
Mamamamamamamama

Reaching Out

I got a phone call Wednesday afternoon. It was a conversation that lasted 51 minutes and 57 seconds, not once during which I yelled, begged or felt hot tears welling up behind a headache fueled by stress. Nope. This phone call has left me lighter, although I wish physically, mentally. In fact, I feel like a feather.

When Dr. Shurr sat down with us on June 22nd and told us about Addie’s diagnosis, I immediately began to research. Everything that came up was negative. From the media portrayal to stories of surgeries and even deaths. It was heart breaking. I felt guilty. I felt sad for Addie. I wanted to do everything to make life easy for her, and was left to feel like all I had done was make her life difficult.

So I did what I do when I need to vent.
I wrote.

I blogged and was inundated with response from a whole new community. A loving and understanding community- complete with information no doctor had presented me with.  I was relieved to find so many blogs with information, but where was the medical community on this one? Why did it seem that no one besides other parents knew about Achon babies?

So many people reached out to me, many emailing and sharing their stories and all they knew to help Dave and me navigate Addie’s future, and for that I am so grateful.  One mom, in particular, went so far as to call me. She is the phone call.

She shared her story about her daughter who is nothing shy of beautiful, and is completely average in all she does, except her height. She does everything her older sister does, including scaling the stairs of their multi-level home, and does it with panache!

Since I began this week with a healthy does of puff, I wanted to end it with another light-hearted piece, filling your week with the sustenance of life: compassion.

This mom spends her days helping other parents who are just learning about dwarfism, understand what lies ahead for their child, and know that there are good stories out there to go with the “bad”.  Sometimes achon kids and adults need surgery- average height children and adults are no different. Achondroplasia doesn’t have to mean a new home, not having other children or a constant battle with insurance- sure these things may present themselves in different was; a stool in every room, a sibling who needs to understand their sibling has a few limitations, and an unruly agent who needs a lesson in LP, but for the most part, it’s all  going to be OK for Addie. She is my little blessing, as every baby is to their mother. I love her- big or small, and I am so excited to journey through life as a mom learning all I can to make Addie’s life the best it can be for her before she ventures out and changes the world!

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.

Brass Tacks

When you boil it down, there is a ton of information about parenting; breast feeding, diapering, scheduling, milestones, sleep patterns, bathing tips, birthday party ideas… these things rule the Mommy World on the internet.  But where is the information for a child who is not average? You know… the child who is above average, but below in height? Where is the information for children with dwarfism? And if you can’t find anything more than general information about dwarfism, let’s make the search easier, and pin point what we’re looking for: achondroplasia.

There are a ton of “facts”, and “the genetic workings” are explained in detail, but the deeper details, multitude of growth and development charts, information on specific spinal development, and what toys, carriers and car seats work best. Where is that information?

Well, it’s not there.

It’s not in Parenting, Parents, American Baby, Family Circle, Disney Family, OR at your geneticist’s office.  It’s not that I’m angry, I’m just confused and deterred. Who do you ask if the doctors don’t know?

I love nice people as much as the next gal, but when I want answers, I want answers. I  don’t necessarily care if a doctor is nice when there is no information in hand. It’s not a hard concept- I want to know all there is to know about everything there is to know ,so that Dave and I can raise Addie in the best way possible for her and her needs, while not forgetting our own. We are good parents doing a lot of research, spending time and energy on excavating information that a working doctor does not have time to seek. Except, the one doctor I hoped would know enough to answer questions I had without reading an article she presented to me weeks ago.

I am wholly aware that I need to be Addie’s best advocate, but is there anyone out there who will help me?

The most helpful information I got from the geneticist: Addie’s measurements. For which I provided the growth charts to be plotted upon.
…And provided the accurate reading of said charts- as the assistant, a pediatric specialist, seemed unable to read the caption under the chart stating which lines were for Achondroplastics and which were for AH children.

And so, I guess I’m really just relieved that I did a ton of research so that I could tell the doctor what she was missing, and so I knew what questions I need to delve into further with the right people. But, who are the right people?

I’m hoping to find some answers in Delaware… insurance pending. Insurance; I believe that would be a whole other blog!

On a happy note: HAPPY THREE MONTHS TO THIS BEAUTIFUL BABY GIRL!!

Thank you, one million times over, to the wonderful parents I’ve connected with who have given me more than advice- they have shared all of their medical knowledge with me- making disappointment easier to handle.  When I can’t find the exact answer I need, I know I can gain  a wealth of medical information from moms and dads who have walked the line before me.  Thank you. Thank you so much for sharing with me and helping me navigate my way as a new mom!

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!

Support

As new parents to this community, we’ve read of all the things that can go wrong and the hardships that could face us.  It’s all so scary, especially because you can see yourself there, too. There is a little of your story in everyone’s; medical bills piling up is just an added terror when you’re helplessly watching your child suffer. Reading this specific story about such a fighter and the wonderful family backing him- I have no choice, but to spread the word.

Please read about Teo and his family and help out if you can, or just spread the word- Facebook, Twitter, emails, word-of-mouth…

Help Team Teo!