Tag Archives: community

November 2, 2012 · 8:25 am

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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October 25, 2012 · 11:09 pm

My apologies

As I sit here too late at night to think, I wonder: where has my time has gone?

Like any new mom, I am tired. But I am not tired because Addie doesn’t sleep. I am tired because I don’t sleep. My mother is coming tomorrow, but the house is already so clean that I decided I had to wash the couch cushions before she arrived.

The. Couch. Cushions.
Did I mention one couch is brown and one is cream?
That’s two separate cycles. Two different detergents. And twice the drying time.

That’s not to say that my house is immaculate. I have sewing material from one end of the dining room to the other, from fabric to thread… I NEED to get a pin cushion. That makes me feel about 100 years old. However, there is no hair on the floors, the bathroom is scrubbed and my bedroom can’t be vacuumed at 11pm. And so, the couch cushions are being picked on. Plus, they smell like Carter. The dog.

My real reason for wracking my brain is where is my writing? I have been looking for the same passion I possessed when I wrote my first post. When Addie was still trapped by wires and IVs in a hospital bed. When I looked at her and was filled with so much love and fear I thought I would explode from the pressure building in my body. But, I didn’t. I wrote. I released it all and I felt better. The research I found, the community built around me and the love and support of family were all I needed.

We came home, and I wrote more and more. I looked down at her and felt home. Free. Accomplished. I felt love.

I have been so obsessed with getting all of my emotions, science and fun about Delaware out that I’ve forgotten how to organize my brain. I’m so focused, I cannot focus! And so (finally), I have a post coming… a fun post- something great for parents looking for alternative travel. I wanted to whet your appetite and let you know: I DID NOT FORGET ABOUT YOU, READERS!

Sometimes, I forget about me. I sit with my glass of wine and talk with my husband, but I forget to get on the computer and get it all out of me. Release all of the things I need to say into this damned machine that entraps me with LIKE, Approve Tag, Pin, Share, and the sorts.

I like to write. I need to write. And I want to let you know… everything went great in Delaware! I have travel tips coming soon, as well as new growth and milestone charts for achon babies (parents, I hope your printers are working), more information about children with dwarfism in general, and a whole slew of new thoughts brewing in this over-tired brain!  Thanks for sticking with me!

Addie thanks you, too!

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August 17, 2012 · 10:28 am

4 Months

What does 4 months mean to me?

4 months means:
A baby girl that has filled me with a joy, love and passion I’d never known existed. Compassion and empathy. Strength and courage.

These past four months of my life have been an amazing roller coaster. Sometimes I throw my hands up at the highs and sometimes my stomach plummets into turmoil at the lows. I don’t know where the next 4 months will bring us, not to mention the next 4 days… what day of the week is it anyway?

Having a child who is different can leave a parent feeling isolated, sometimes because it is isolating, and other times because a parent makes themselves feel that way. I don’t expect many people to understand. I didn’t understand until I was there. Achondroplasia is so rare, that there are not a million other people out there who know what Addie is going through, or Dave and myself as parents. As a friend, teacher, or therapist of someone who has a child with a difference, you are not living with your flesh and blood and all the questions that make us unsure. I’m scared everyday- I want to know she’ll be OK, but there are tests to be done and results to be read. It can be an isolating world out there.

I hugged her  last night and asked her to promise me she will wake up. Is that sick? Probably. I have a whole blog for you about that. I teared up and Dave promised me she would. Sometimes hearing what doctors test for make you more scared than not knowing at all. And in 4 months, this is a lesson I’ve learned.

I’ve also learned to love completely. Forgive wholly. It’s OK to let go sometimes. Other times, hold tight. I’ve learned that other people won’t get it, and what they say might hurt me. There will be days when what people say and do will hurt Addie. I’ve learned that when I’m upset, it’s because I’m upset, not because someone made me or someone meant to hurt me, and that’s OK. It’s OK to feel our own emotions, and express them how we need to. I’m not here to make you happy. I was put on this Earth for Addie and Dave. For my parents and family.

I look at Addie’s dimples, her infectious smile, a head full of unruly hair and I cannot help but be filled with joy. She coos and half laughs, conversing in her own way, making everyone who meets her melt with the love and happiness only she can bring.

As I celebrate my beautiful baby girl, I want to also celebrate all the parents out there who remember to cherish each day. It’s not easy to be a parent, especially when you feel alone. There are days ahead filled with sleep studies, x-rays, MRIs and miles of driving for doctors to poke and study our baby girl, but when I’m old and gray and Addie is there to take care of us, I know she will understand that’s just what we do for those we love.

Happy 4 months to Addie and to all the other April 17, 2012 babies! May your next 4 months be full of more wonder and awe. More community love and support and a little more understanding for the things that you may not ever be able to understand.

And so I present to you, Adelaide Eileen Martinka:

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August 5, 2012 · 3:17 pm

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!

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July 20, 2012 · 5:34 pm

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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July 13, 2012 · 11:46 am

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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June 30, 2012 · 9:00 am

Community

I belong to a New Mom’s Group with RI New Moms. All of our babies are in the 0-3 month range. All of our babies are learning to coo, watching their fists and balling them up into their mouths, tracking things with their eyes and growing up faster than we’d like. All of our babies are the same, yet different, and I’m so glad Addie’s different was so lovingly embraced.

I tried to tell everyone in the group about her hospital stay and how we learned of her diagnosis in an unorthodox way.  I wanted to make eye contact, but I couldn’t stop looking at her. I was preparing for people’s faces to drop, to see wide eyes, hear a gasp that inadvertently made its way past someone’s lips. But that never came. Smiles, head nods, and looks of compassion not pity, were all around me. Addie would be loved by these women, just as she was loved by myself.

Communities seems to be fleeting in some cases. Friends we make at one intersection of life sometimes fail to crossover as we grow, change and, ultimately become who we never thought we would be: our parents (HA!). But, I need people. I need a community of men, women and children who can tell me I’m doing the right thing for Addie.  You can never know exactly what your child is going through in life; kids get meaner by the year, after all. However, I will never be able to tell my sweet baby girl that I know how she feels because I’ve been there, too. I can taste the bitterness in my mouth, feeling like the angst-y adolescent I was over a decade ago. I want to tell those kids off and push them to the ground. I want to lose control. I want to make people who have yet to exist, hurt for reasons yet to manifest.

And so, I wait.

I watch her little chest rise and fall. I tear up every time she smiles in her sleep. I have done this since she was born. I’m boarder-line stalking my child.  I cannot help it.

I mentioned to Dave, multiple times, about how I am so shocked that she is here. One minute she was in me and I felt her move, and with each new happening (a flutter, a kick, hiccups), I felt like now this is real, but now she is here. She is lying next to me in her pink bassinet and she is real. She is real and really amazing. And she is mine. She is ours.

I suppose never having carried a life, Dave can’t totally understand my feelings, but he loves his “little bit” and I love my “bugga-boo”. We, collectively, have about 300 songs for her, stemming from the multitude of names she has, ranging from Addie-Boombaladdie to Battle-aide (when she’s battling sleep) and so many more.

When it all gets too much, and I need someone, I reach for my cell phone and email someone. Some I’ve just met in one of the many communities I’m coming to form as the cohesive guild I need for me, while some I’ve known for years and have stood the test of time.

The outreach has been unexpected. People who know people. Friends who have friends. Getting an email from someone who knows someone, or is someone who is a little person- reaching out to me, making themselves available and knowing that I just don’t know what to expect. I want to do what is best for Addie- always. I want her to have the experience she deserves in life and every opportunity afforded to her peers- whether they are large or small, short or tall. Just perusing Facebook pages and other blogs, I see happy families, college-bound students, sporting events, vacations, boyfriends, girlfriends, and happy hours.

And I am at ease.

There is a community who will help us raise Addie- it takes a village, after all. She will be loved by many, and feared by some.

But aren’t we all?

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