Tag Archives: achondroplasia

Listen Up! #LTYM

Did you see the announcement?!

The 2014 Providence Cast has been announced.

Cast for what?

Listen to Your Mother!

#aisforadelaide #listentoyourmother #providence #LTYM

You may remember that I auditioned last year (I wrote about it HERE). I didn’t make it, but I promised to return- with new writing, more spirit and a refreshed outlook on motherhood. Let’s just say, this year I’ll be a bit more badass.

Want to know more? Get your tush in a seat for Providence’s second annual Listen to Your Mother, proudly produced by the amazing Carla Molina, buy grabbing your ticket (and a friend!) HERE. This event will not only be for those who are mothers, but those who have mothers- an event for all… coming together with proceeds going to the amazing Tomorrow Fund.

I cannot wait to laugh, cry, celebrate and learn on May 10th, with my fellow cast mates, about the many facets that make up what we all embody, because we have a mom, motherhood.

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Filed under Educate/Adovocate/Make Change

Marvelous Monday

And just like that: Monday!

We had a whirlwind week (ummm… it seems like this is a real pattern here), and now that we’re finally home, in our little abode, it is all hitting me. My phone is buzzing and vibrating with photo tags, well wishes, comments, and a list- a list of gifts, cards, beautiful  messages lining cards all meant for Addie. In just 2 years my sweet angel has so many who love her, who celebrate her. For all the people who could be there and all those who wanted to be, I am thankful. How can one little girl have  such love surrounding her? As I type away, I am watching her sleep, and even with her eyes closed and her chest rising and falling, with her gentle snore… there is still the hint of her smile. Her happiness and her personality are always shining through- and this is why people are there. She’s a magnet to love. Our love. Your love. Thank you for celebrating our (almost) two year old with us!

#aisforadelaide #happybirthday #AddieisTwo

*  *  *

I forgot to update everyone on Addie’s growth (which we truly only chart from her specialists) in the last post about Delaware, so I wanted to share her stats here:
23 Months:
24.25 pounds
29 inches long
20.3 inch head circumference

As I plotted her newest numbers with the doctors on the most important CHART according to her doctors (weight for height), we came up with Addie being at -1 SD for her head, which really put to rest the concern for hydrocephalus because her head is slowing on its growth  pattern. For height, she’s at +1 SD, so she’s right above the mean, and for weight she’s right in the middle. When you see the numbers on a growth chart, her own growth chart, it’s pretty cool! Dwarfism is an umbrella diagnosis with many forms defining it, and I feel very fortunate to have so much research about Addie’s form to help guide us through her possible medical needs.

*  *  *

Lastly, some random to start your week off… Heather, a fellow blogger and advocate, contacted me regarding a cause close to her heart. As I read her story and web page, I felt the need to share the information with you. As a child, I remember my school spending a lot of money to renovate during Spring Break one year. When we came back, there was some discussion about asbestos and that’s what they were doing… as a kid, I had no idea what that meant, but loved that our tiny school had gone through a face lift. Reading Heather’s story brings me such peace- knowing that I was not exposed to something so terrible as so many are. Please read and share her story…

At age 36, I was diagnosed with mesothelioma just 3 ½ months after my first and only child, Lily, was born. I was given just 15 months to live unless I underwent a drastic surgery to remove my left lung. Miraculously, I beat the odds and I’m still here eight years later.

Asbestos is not banned in the US, yet it’s the only known cause of mesothelioma. I was exposed to asbestos through my fathers work jacket when I was just a little girl; my diagnosis came about 30 years later. Once diagnosed, most patients die within 2 years. I am one of few survivors who openly share their story and work to spread awareness regarding the dangers of asbestos.

In honor of Asbestos Awareness Week (April 1-7), I created a webpage dedicated to raising awareness. Although this week has passed, I would love to help educate and protect your readers from this preventable disease!

Here’s the link to my awareness page: mesothelioma.com/heather/awareness

#themoreyouknow

Have a beautiful week, Reader!

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Every Six Months…

We made it to Delaware… with minimal traffic- which always makes me happy! Being in the company of doctors who are so confident and can answer questions that I forgot I had, or that I never even thought of always calms my mind.

When we got into the room with Dr. Bober, we sat down and Addie started playing. We talked a lot about where she was developmentally, her walking, her sleep- the usual. We then talked about her ears- which are at the top of my worry list. With her tubes coming out and her infection, we came to the conclusion that she will, most likely, end of with another set. Also, interestingly enough, we discussed the idea that her adenoids could also come out. Our ENT, locally in Rhode Island, spoke about a 50% chance that if we remove the adenoids with another set of tubes that a recurrence of tubes would be unnecessary. Dr. Bober assured me that this number is not reflective of children with achondroplasia.

A new lesson in life.

So… we will check her ears in a few weeks, see if there is fluid in there, and then take it from there. Should fluid still be in there, we will check for swollen adenoids. Fluid, tubes. Fluid and swollen adenoids, tubes and adenoids. Plan of action- simple! Of course there are a million steps in between, but to have a start and an end point makes the middle ground a bit easier to navigate.

So we are moving out of the worry of hydrocephalus, as her soft spot is closed and she has no signs, as well as the concern for central apnea (which seemed to disappear after 6 months) and kyphosis because Miss A is up and walking… and her x-rays looked amazing! Hearing that her spine looks great is nothing short of wonderful news!

And what are we looking at now? The bowing in her legs, which is something Dr. Mackenzie really keeps an eye on. Obstructive apnea and being aware of the signs, such as snoring and bad sleep patterns. And we also have to be more conscious of ear infections, especially because Addie’s tubes fell out already… but we already talked about that! :)

Some interesting facts for expecting mamas:
We have a 2-3% chance of having another child with achondroplasia.
A Level 2 ultrasound after 30 weeks will give us answers if there are size concerns.
We could still have a child with dwarfism without knowing (just like with Addie!).
Bonus?
We aren’t concerned. Knowing what we know now, we are thrilled to be welcoming another baby into our family!

… and then Dr. Mackenzie. After we ended up doing acrobatic acts on the floor:

#aisforadelaide #babyyoga

#aisforadelaide #yoga #downwardfacingdog

Colleen and Mac came in to examine my sweet yoga girl. After a few looks at her, we took to the halls of DuPont for some walking action. Make that running! Knowing that she’s been falling sideways a lot, I was worried about her legs and knees… but thankfully her legs are just the way they are (for now). We are having x-rays done to make sure her legs are going in the right direction and, as usual, monitor if she has any pain or increased falling.  Addie does have the typical hyper-extension in her knees, but she also has hyper-mobility that causes her knees to arc sideways, which could be adding to her falls (but not bad per se).

As expected, we will be going back in 6 months (really 7) for her next set of appointments and are excited for what lies ahead. The best part of going to DuPont are the answers, the new knowledge and knowing that the next time we see these specialists we will have a whole new world opened to us. Given that we see the doctors every 6 months we are never given too much information that we worry for months to come, but we always leave with things to think about.

… we hope we can work with our insurance going forward and are looking to generate more information about United’s vendetta against major medical providers and bringing them back to Nemours! (Hello high hopes!)

Until then, We hope you had a wonderful Sibling Day… Addie loved giving her soon-to-be baby sibling a kiss while we were on a beautiful family walk:

#aisforadelaide #siblingday2014

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Adelaide has achondroplasia

Adelaide was born after a lengthy labor on April 17, 2012. She was perfect. Beaming up through eyes that spoke of wonder. We swaddled her and held on for hours. It felt like we could not sleep. She was too much to let go of- her small body (18″) was a ball of cuddles that we’d waited almost 39 weeks to hold.

As the weeks passed, I noticed she didn’t look like the other babies in my new moms group. She was… rounder. She was happy, and a great sleeper, but she wasn’t the same as the other babies and I couldn’t put my finger on it. Each morning as I dressed her, I saw that her clothes fit oddly, and her head struggled to fit in her onesies.

Her head is big, I remember saying to her pediatrician’s nurse as she took measurements at her two month appointment. Addie was 9 weeks… and the ball had suddenly been put in motion.

When the doctor came into the room to examine Addie, she took two looks at the measurements and whipped out her own tape measure. She looked Addie over, asked me some questions, and cooed at her tiny patient.

What was happening? I wasn’t sure. But my stomach was in my throat,

You’re right, she confirmed about Addie’s head. It was bigger, but she was also measuring a bit small. To be safe, the pediatrician ordered an ultrasound of her head and x-rays of Addie’s long bones (arms and legs) to make sure everything was working as they should be, to be performed the following Monday, but we didn’t make it that far. A few hot days later with a lethargic infant and incessant fever, Addie was admitted to our local children’s hospital. An emergency CT of her head was performed to make sure there was no abnormal fluid in her head- this called for multiple spinal taps to be attempted unsuccessfully (and without anesthesia of any kind) to check for meningitis. Due to her high level of dehydration, the tests were lacking enough fluid, and we were left to give her broad spectrum antibiotics.

Panicked, I called my mom (250 miles away) who hopped in her car and started the drive up.

Because the tests were already on the table, while admitted, Addie got her x-rays and ultrasound done. After hearing that her head and brain were fine and there were no signs of hydrocephalus, we were wheeled back to her room to wait. I tried to sleep, to read, to do something, but I was stuck in a whirlwind of what-ifs.

I’d read it all… so when a woman came in who introduced herself as a geneticist, I knew we were looking at something serious. I listened to her introduce herself and say that she just wanted to stop by and check in on us. She was asked to look at Addie’s x-rays… I stopped listening, but then  she stood up, shook our hands and left.

Photo: Dimery Photography

Photo: Dimery Photography

I tried to nurse Addie, who was still having trouble eating, so I resorted to the pump. As I stood at the hospital room sink, burning my hands in the water, I looked up in the mirror to see the geneticist walk back in. I stayed there, forgoing the pain of the water for a minute. The look on her face was a nervous smile, not that of a confident woman. I sat down. I was prepared… but numb. The woman in front of me talked about the x-rays, the best doctors in Rhode Island, thorough examination…

Adelaide has Achondroplasia.

My husband asked what that was, but before he could finish his questions, I blankly said dwarfism.

I cried. A lot. I didn’t know enough about what was happening. Was this why she was sick? Would she be ok?

As it turned out, her dehydration was unrelated. She wasn’t great at latching, the summer was hot, and she had spiked a fever. That was why she was sick. Dwarfism was not an issue here.

In fact, here we are 2 years later, and dwarfism isn’t an issue anywhere. Some things are different- that’s for sure. Addie is a pro at staying still for x-rays, falling asleep with things attached to her head and body (sleep study), she can travel hundreds of miles by car without much issue to get to and from her geneticist in Delaware, and she’s encouraged to climb objects to get what she needs (where as other kids are told not to!).

When I think back to those days in the hospital, the fear and the unknowns, they scare me- how could I know so little about my own child? But they also serve as a reminder that what is different is not bad- difference is something to be celebrated and advocated. Our lives are different from most, of course… but it’s an amazing life. And that’s what means the most.

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Because Normal isn’t What You Think…

My life is different from your life. It’s got nothing to do with you, your child or your relationship status. Actually, it does. That’s it exactly.

We are different.

Do you need me to prove it? I went to private school. My pinkies are curved. I only have one living parent. I love my step-father. I have 4 siblings. I am a dog person. I prefer reading a book to reading on an e-reader. I have blue eyes. I grew up in suburban Philadelphia. I haven’t gotten a haircut in over a year and a half. Ice hockey is a way of life. I enjoy running. I own a life insurance policy. I think water is delicious. I never want to own another car besides a Subaru.

Did  you get all that?

We’re not the same.

But that’s ok.

Somewhere along the lines, someone thought that someone like me could be considered normal. Here’s a few things that you may not know.

I have flat feet. I’m above  average height for a female at 5’8′. My father died while myself, my mother and sister were holding him. I’ve suffered from depression. I  don’t love where I live. I have a child with special needs. I’m addicted to social media (but I won’t be detoxing). I have over 30 tattoos and a permanent piercing. I’ve totaled more cars than most people own in a lifetime. I’ve miscarried. I have anger outbursts that I’ve worked almost 30 years to control and still struggle with.

But, someone thinks I’m normal.

I know this because I’ve been asked how someone normal has a special baby. Well, here’s how it goes. Two normals get together- you know, in the between the sheets, don’t tell mom kind-of-way. A baby grows. It’s an amazing baby. The parents, those normals I told you about, have dreams and hopes for this baby. Then the baby is born, and it’s so much different than the normals expected. It’s not better, or worse. It’s different. This child is, GASP, normal too. Sure he or she is different, but all humans differ. If you believe that there are two people alike, you’re only fooling yourself. All children are special. They are all unique- even those really strange ones like my brothers who are identical twins. Somehow those kids, 21 years later, are night and day… both amazing, handsome, special kids headed in two different directions.

So what’s normal? How the hell do I know?

I’m a tall woman, with crooked fingers and flat feet. I’ve encountered death and loss the likes I don’t wish on my enemies (do I have those?). I’m married, but is that even a cool thing to be anymore? I live with  OCD issues paired with insomnia (no, I don’t consider any part of my life to be suffering from…).  My normal husband? He’s a 37 year old who made a career change at 35. He went from a single guy-musician-business owner, to husband-solely-supporting a family of 3 (soon to be 4!) in under 5 years. He’s not very tall, or dark, but he’s really handsome. His nose is big and his heart  is huge. His normal-self didn’t own a car for 6 years. In fact, he’s so normal that he chose me to marry (as described, I’m as normal as they come, no?).

Normal? It’s not what you think.

What are you? What am I? What is Dave? And Addie?
Well… we’re all human. Let’s act accordingly.

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Society’s Illogic, a Tragicomedy

written by Katherine Clarke:

To preface this piece, I would like to quote my younger brother.  In a written conversation, about a year and a half ago, he shared the following:

You’re extraordinary because you see the world’s flaws – and thankfully you’re smart enough to ‘understand’ that while they are not always fair, they are an inevitable force we all must face.  Life is about dealing with other people.  It’s totally unfair, biased, annoying, and infuriating at times, but the world is random, and we have to accept the uncertainty and the inability to control others.  Being the center of a crowd is a powerful position to be in – to say and do the right thing.  You have the power to be that person.  And I say that with total disregard to you being short-statured.  I don’t believe you are aware of the power your presence commands, Kate.  Because of the ridicule I fear you only ever feel ‘little’ when you need to simply be Royal in your own way.  People are right; you are intimidating because you’re strong-willed.  

My brother’s supportive email correspondence came to mind after noticing two recent posts on Chelley’s Facebook wall.  The first post captured her reflection on Lent:  “I’m giving up beating the shit out of myself.  No negative comments, no self hate or criticizing my face, hair, and body.  Hoping it sticks.”  And the second post highlighted an article detailing a concert review of Miley Cyrus’s performance onstage during her “Bangerz” tour.  The news article was originally posted via Chicago Sun-Times’ website.  And illustrated on her wall, Chelley stated the following comment in reference to Mark Guarino’s “Concert Review:  Miley Cyrus at Allstate Arena”:  “The use of the m-word and the fact that someone chooses to be a part of something comparable to a ‘carnival of curiosities’ is mind boggling.”  Chelley is right.  And my own evaluation on the subject is an attempt to justify why I agree with my friend’s point of view.  Yet, before I could finish drafting my collective thoughts, editors at the Chicago Sun-Times removed the “m-word” from their web-based article.  A victory, indeed.

I want to revisit the content in Chelley’s post on Lent.  For Lent, I, too, am giving up beating the shit out of myself.  My mother once told me, “Bitterness, Kate, can destroy a woman’s beauty.”  I can’t compete.  I surrender.  My mother – she’s right.  I did not sign up for the haggard look.  The original Chicago Sun-Times post was tragic.  The language it used to identify a person’s short-stature was a tragic blow toward the understanding of humanity.  And we all know the Nursery Rhyme that suggests we should not fall victim to name-calling, right?  “Sticks and stones will break” our “bones,” but the connotations of certain words will “break” our spirits, too.  But instead of beating myself up, I invite my audience to consider this message.

Aaron Sorkin is a well-known playwright and film director who coined the phrase “Tragedy Porn.”  The term was featured in the first season of the popular HBO television series The Newsroom – a drama Sorkin created, produced, directed, and scripted.  Its context (i.e. Tragedy Porn) describes how news stories can become something similar to a “reality show” that audiences will “indulge in” purely for “entertainment”; however, the information shared in the rundown is often tragic on a distasteful level.  Case in point – Miley Cryus’s recent antics and the “midget” backup dancers she employs on stage.  And to revisit my brother’s honest and compassionate thoughts, he said:  “You’re extraordinary because you see the world’s flaws…they are an inevitable force we all must face.”  It’s neither fair to see nor hear the media use such vulgar language to point out a rare demographic – dwarfism.

I do not like facing this ugly stigma that gets more attention in the media’s spotlight than the intellect and literal happiness I share with my students in an academic, college classroom setting.  And I find myself asking why?  Why is “Tragedy Porn” in the A-Block and not the normalcy that is my life?  I can’t help but wonder if society fears the power I possess?  Believe it or not, my brother, in the same written conversation, answered my question:

People like to watch destruction, not be a part of it.  But I think it’s easier to join in with someone who’s passionate about something.  Your success in leading a conversation will come when you find a way to shift the light successfully on “America.”  Write from your experiences, your observations, your wishes, your ‘understanding’ of what it is like to be a short-statured woman in a world full of contradiction and fallacies, not from your distaste and disappointment.   

My brother is talking about assimilation, and again, he is right.  I am a part of this country.  Langston Hughes said it perfectly – “I, too, sing America.”  I am a part of this world.  My students appreciate the information I have to offer them.  And yes, some of the information stems from my own experiences, observations, and wishes.  They can see my intense passion and strong desire to promote the power of the human mind and its ability to engage inquiry.  That reality is NOT tragic.  It’s awe-inspiring.

I can go the other route and continue to offer reasons why I am “disappointed”; that is, disgusted by the internal feeling that often keeps me up at night.  The feeling that convinces me I must fight in order to prove my integrity as a woman – to show “America” I am not a caricature referenced in a “Tragedy Porn” sensationalized mess of a news story.  But I can’t do that.  I won’t.  It will make me bitter.

The Bully-Centered Mentality, post Charles Darwinian, Survival of the Fittest world we live in capitalizes on the power it can hone by belittling individuals the Status Quo deems unfit.  It’s a ruthless competition.  Both the media and those who participate in the freak-show of a “carnival of curiosities” create the spectacle that brands this erroneous image of dwarfism.  It is difficult for me to ignore that bitter reality.  It is a sour, unpleasant taste my palate does not care for.

Again, my brother said it best:  “It’s totally unfair, biased, annoying, and infuriating at times, but the world is random, and we have to accept the uncertainty and the inability to control others.”  So I will return to Chelley’s comment on Lent:  “I am giving up beating the shit out of myself.”  It’s the right thing to do.  And I think it’s safe to call my brother the Oracle.  Extracted from the same written conversation:

Kate, the media perpetuates these phantasmal lifestyles, but these days, humans crave stimulation more than anything – it’s our lethal legal drug.  Technology has completely changed who we are as people – we eat for pleasure, not survival – kids fight for recognition, seeing it as success to be the next Laguna Beach idiot or Real World superstar – but you and I both know there is an actual real world out there.

I hope the media chooses to push the envelope, but in a different kind of way, in a way that is so far removed from the degrading “Tragedy Porn.”  As an alternative, I hope the news can offer a stimulating story on something that hasn’t been told.  A story about the beauty of intellect, intuition, and sincerity.  A story about those who are extraordinary, positive, and STRONG-WILLED.  That’s attractive.  That’s desirable.  That’s power.  Is it possible for the Status Quo to recognize, accept equally, those who are different have the potential to command great power?

 References

“The Blackout, Part I:  Tragedy Porn.”  The Newsroom.  Dir. Aaron Sorkin.  HBO, 12 Aug. 2012. Television.

Clark, William.  “Re:  A Worthy Conversation.”  Message to Katherine Clark.  12 Oct. 2012.  E-mail.

Guarino, Mark.  “Concert Review:  Miley Cyrus at Allstate Arena.”  Voices.Sun Times.com.  Chicago Sun-Times, 8 Mar. 2014. Web. 8 Mar. 2014.

Hughes, Langston.  “I, Too.”  The Harlem Renaissance:  Hub of African American Culture, 1920-1930.  Ed. Steven Watson.  New York:  Pantheon Books, 1995. Print.

 

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Filed under Community, In Other's Words

Marvelous Monday

I’ve reflected time and time again about how beautiful the weeks are as they pass. Even when they really aren’t anything most would write home about- they are what make the big things seem SO spectacular. The mornings you get 5 extra minutes of sleep, a sip of hot coffee and some of the sweetest unintelligible love babble spoken from the lips of a small human you created. Those are just weekend mornings… but they are so much more when they’re too old to climb into bed with you. Too cool. Too grown up. Too on with their own lives.

What a beautiful opportunity we have as parents- no matter how we got here- to raise these people, shape their minds and change our whole perspective on the world with just the blink of two small eyes and the squeeze of one small hand firmly wrapped around our finger. Our children change the whole game of life.

Because of becoming a parent. Because I’m a parent to a child with dwarfism. Because I am a parent to a child with dwarfism who started a blog.

People come to me.
They ask questions.
They seek answers.

But, most of all, they want to hear the words so many doctors just won’t tell them: it’s going to be OK.

A young woman named Hannah, is such a parent. She asked me lots of questions on Facebook, through email and messenger, and then I gave her my personal number. We texted about achondroplasia, her son Jude, due in April, doctors, and being parents- before anything, we are just your average parents wanting the best for our babes. We talked about her upcoming shower and how excited she was.

Then an email. An emergency. A request for prayer.
At just 32 weeks, Jude was in distress and the doctors were making calls that scared Hannah and her husband Sullivan. An emergency c-section? So early?

We prayed.
Every night.
Sometimes it was to God, other times to my Dad to ask for his protection and sometimes just letting out tears to the Universe to be fair.

And then days passed, and his heartbeat was strong.

Brave Little Warrior

As Hannah passes 33 weeks, she begs her body for more time. To hold her sweet warrior, Jude, safely inside her and help him develop stronger each day. And we, The Martinka Family, are pulling right along with her.

This week, Reader, I ask you to send your love, messages and prayers to the Peters Family. You can read more on Hannah’s blog HERE, or join their Facebook page HERE to get updates.

Thank you for sharing all your Marvelous Monday with me. Have a beautiful week!

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Filed under Achondroplasia, Community, Marvelous Monday

She’s Genetically Modified Already

When it comes down to it, we spend very little. Almost insanely little each month… but what we do spend, is spent well. Like healthy food for instance.

Addie is genetically modified. She’s the perfect creation from a spontaneous genetic mutation of the FGFR3 gene, resulting in achondroplasia. What she’s not made for, what no child is made for, are the GMOs, pesticides that kill insects from the inside out and the chemicals made to produce expedited growth and thus the demise of thousands (millions?) of animals each year.

Though we could choose cable, or newer cars, faster internet, fancier phones, better clothes and perhaps a vacation, we choose daily living. We choose everyday to be a beautiful bridge to the next, and hold to our beliefs that food is fuel, and though should be enjoyed (of course!) should also be practical; limiting snacks and dairy and eliminating as much added sugars and dyes as possible.

But, I’m not here to give you a lecture… in fact, I just wanted to share a list with you! Many people know what the “Dirty Dozen” are, but very few are aware of the “Clean 15″. While I love shopping organic, we just can’t afford everything to be that way (wouldn’t that be ideal, though?). So, here are the Clean 15 (remember that farming standards change every year, so be sure to check your local area and check the web for yearly updated information):

#aisforadelaide #clean15 #organic #cleaneating #healthyfamily

We are excited for the summer farmers’ markets, fruit stands and farm picking, but also do our due diligence, looking for organic standards and asking questions- not all things sold in pretty, recyclable packaging is organic… and the word natural means NOTHING. Literally, nothing. Berries are natural whether they are sprayed with chemicals or not. Be aware. Make the best decisions you can… and save some money when you can, too! I hope knowing that there is a clean list is just as helpful as the dirty list- I know having some peace of mind while shopping always means a lot to me.

Lots of love and health to you and your family in these last few months of winter,

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Filed under Community, Parenting/Family/Lifestyle

Marvelous Monday

And, we’re back! I hope all enjoyed the superb owl… I was cheering for the Eagles (ha… birds… get it? No? Ok… I’m done being punny). So, after a beautiful week last week and a ridiculously warm weekend, I’m preparing for Punxsutawney Phil’s prediction of 6 more weeks of winter and we are having the oil tank topped off today. Hooray?

This week I am thankful for the blessing of staying home and blogging- for the ability to work at getting my writing career off the ground and spending so much time watching Addie grow. I love that she is so independent, but I also love that I’ve fostered that. I’m there to see it. Most of all,  I love that my readers see that, too.

A few emails come in each month from new parents, or parents-t0-be, of children with dwarfism. Some have a million questions, some have fears, many just want to say thanks. For that I say, THANK YOU!

I love that so many read this blog- for information, for silly stories, recipes, giveaways (like THIS one or THIS one), for charts, to educate… just because you stumbled in here… I love each one of my readers. Truly. But more than anything, I love that so many know that I am here for them. So many moms, dads, grandparents, teens, family members, and friends have clicked the contact form and emailed me. Whether it is just a simple hello, or if you have  laundry list of what-if’s and how-will-I-knows. I am here. I always will be.

From the moment I sat on the hospital bed, watching the littlest wonder finally resting, hooked into a handful of IVs and monitors and heard achondroplasia, I knew we had one of the most beautiful, albeit different, journeys ahead of us as parents. If you need to reach out, do. I have the opportunity to help you, and am so thankful that I do.

*  *  *

And… some info for parents looking for help: The Shriners! This is not just for dwarfism needs, but I just learned about the Shriners and how they help families who may need medical assistance, specialists and equipment! Yes, equipment.

We have recently run into a few issues with climbing, safety and the like with Addie and spoke to our Early Intervention PT about this… but because our health insurance can be a bit finicky about crucial things like sleep studies, we both knew they would not be forth coming with things like chairs, or other home care items. With this in mind, we were directed to our local Shriners Charity Trust and have an application in! We are very excited to have some assistance with keeping our crawling, climbing, jumping, hanging lady safe- without the muscle tone, coupled with her determination, I fear (more) head falls in the future!

For more information, contact your Early Intervention office or local Shriners (Google search!) for more information and an application to apply. Specialists are also in their realm of assistance- some of the best in the country! I hope this helps families looking for another option to care for their child- let me know if you need help finding out more!

*  *  *

And I know you’re looking for some random, so why not give you some? Take this as you will. For me I mean it for my Life, but some days I have to say this by the hour. Just this second, just this minute, just this hour, just this day, just this week, just this month, just this year. Just this life. Do with it what you will, but remember:

This is it #aisforadelaideblog

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Marvelous Monday 2014!!!!

HAPPY NEW YEAR!

Now that’s out of the way, onto our usual MM post (thankful, dwarfism, random)… Hold onto your hats. It’s gonna be a long one!

This week I am thankful for the 2 weeks Addie and I have had with Dave. Yes. TWO weeks. We left for Philadelphia on the Saturday before Christmas and we got back to RI the following one. Dave headed into work for Monday and half of Tuesday, had New Year’s Day off, then Hercules dropped some snow on us and Dave was home Thursday and Friday. As he heads into work today, I hope he feels the relief of being back to a schedule.

#aisforadelaide #hercules #newengland #snowstorm2014 #blog #asnowday in the Martinka house

Since his time off I have not gotten out of bed before 9am. Most days, not before 10… and there were a few 11′s in there. True story. I ate a hot breakfast almost everyday. I showered more than twice a week. I dried my hair, by myself. I did my nails, put on a face mask or two, deep conditioned my hair, read half a book, caught up on reading some of my favorite blogs and resumed some semblance of a daily workout. This refreshing end/start to the year(s) was so important to getting my head on straight… and brings me to other things to be thankful for- like the way Dave has changed and his awesome boss.

Spending time alone with Addie when she was an infant was hard for anyone but me- her sole provider of food and the one who understood each cry and sound. Now that she’s (incredibly) vocal, understands requests and direction and eats pretty much anything that’s not nailed down, I find myself alone when Dave is home. Off on some adventure, Dave steals Addie while I sleep to make food, run errands, or read stories in her bedroom. We both give each other the eye in some strange competition of Who Will Be The One She Wants to Put Her to Sleep Tonight. When she’s hurting, Daddy can heal her pain and when she needs snuggles at night, she often begs for Daddy to rescue her from the crib. While it is nice to not have to get up at 4am, I’ve found myself pushed to the edge of the bed, sad. I miss the days she needed me so much.

#aisforadelaide What happens when Dave doesn't work #blog

Then there is the look. The look of peace and warmth. It’s what Dave’s face looks like, even at 6:30am when hungah spews over and over from the mouth of a half-awake toddler into the open space of our room. When she cries waahwaah hungah nanaaah and he hops up and asks, “you’re ready for breakfast, Bug?” There is the look of total contentment. Whatever happens to a woman to feel the love she does for her young happens to a man, too. I’ve seen it first-hand.

#aisforadelaide #blog #weekend

I’m also incredibly blessed that Dave’s boss recognized that his employees come in by train from Boston and from 50 miles away by car, and decided to cancel work before the snow hit. With a few calls and some research, Dave stayed on top of the tail-end of his work week from the safety and warmth (and yet, drafts?) of home. For a job he stumbled upon with a start-up just 3 years ago, his career is blossoming in ways we never could have foreseen.

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And so she grows. No really. I just wrote about this on a post of the same name: AND SO SHE GROWS, AND SO SHE GROWS. If you know Billy Joel, you will see my play on words from And So it Goes, and you may recognize the true heartache that comes with watching your child grow up mature. When Addie was diagnosed, we were warned about all the things she would never do and we were told of all the milestones we would miss. We were given predictions about her height and told she had to be on a hard surface always and most toys were a no-go and her balance would be bad… and so on. And after all that, I was overwhelmed and sad. We got rid of bouncers and carriers and sleepers. I found toys that were good for her, but not always mature enough. And I didn’t know where to go. As a new mom to a special needs child, I wish I’d known all of THIS.

But I didn’t, and I wasn’t prepared for a doctor to be wrong. But she was. Not because all babies with dwarfism do walk before 36 months, although many do, or because she’s not as small as I once believed she would be, or that she has decent balance. No. I wasn’t prepared because I got lost in a negative world. I don’t always see Addie as growing up… she doesn’t always gain an up, but she does grow in her intelligence, in her beauty, in her love and understanding and in her compassion. Initially I was worried I would hinder her into a sheltered life- one where I would hide all the bad. And becoming CPL didn’t help that fear. But then I saw. I saw her say “HI!” to everyone she meets, and wave with an exuberant “BYE PEOPLE”, as we exit any given location. I have witnessed her love, as I cook dinner and she reaches around my leg with a hug and a pat and whispers love you, mama so gently into the back of my knee. She loves me, without prompting or pressure, without even seeing my face, she buries her own into my leg and expresses her own emotion.

Do I protect her? Yes. Just as I will put a helmet, and knee and elbow pads on her to ride a bike. Just as many parents do. I didn’t wear knee or elbow pads and my helmet surely did not fit as well as they do now… does that mean my parents didn’t care? Am I just over-protective? Should she never ride a bike?

I could wrack my brain forever. I could worry about all the things you might think of how I parent, or how your neighbor might feel about me, or that dude who anonymously comments on my posts in the most negative of lights. But then, I wouldn’t be parenting, I would be absorbed in my thoughts about everyone else’s thoughts. So, let’s call it a truce. Let’s make a pact.

This blog was started with the intention to education about dwarfism, but if I focus on dwarfism alone, I will alienate myself and you. I will become obsessed, immersed in so many details that I will come to define Adelaide as a person with dwarfism, and not just see her difference as a part of her. I will come to define all people with dwarfism as just that, and if I do that, I will only see myself as a white woman. That will be who I am.  But it’s not. And so, this blog will continue to educate, advocate, spread awareness and push buttons. I will share stories of change and some of adversity. And here’s the best part: I don’t care what you think. While I would love your support and hope you stay to read more posts, what I crave is equality. For my child, for your child. I seek name calling, bullying and fear of the unknown to become a thing of the past. Ask questions- all of them. I want to answer. I want to know your fears so that I may assuage them. I want you to know what terms are accepted to call a person with dwarfism, and I want you to know that you do not have the right to dictate what others feel. Neither do I. On this blog, the m-word will not be tolerated, whether you’re speaking of pickles or humans or anything in between. The word? Midget. And that’s the end. Those are my feelings, on my blog that I write.

So, I won’t judge you, on your blog, should you choose to write one, and you will not judge me.

x_______________________________________________
      emotionally sign here

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You’re still with me? I hope so!

I wanted to recap last year’s resolutions (only 3), which I found when I named my resolution post this year: THIS YEAR, I RESOLVE. Somehow I picked the same name, two years in a row, without trying. I guess it’s a series, now!

From last year’s POST:

1. Be nice (to me): Yeah. That. Well… I am better, and I don’t bash myself in front of Addie, ever, but recently I’ve noticed my sweet girl pointing to the scale and saying, “mama.” So, clearly, I still need to work on that. I wish I could take the scale away, but I truly believe it is useful- especially for long runs. I weigh myself before and after to make sure I am not dehydrated. I also check my weight more often than I should, but now I need to be aware of not doing this while Addie is awake. I think this is something many women need to work on, and clearly I am still trying to justify my need for a scale. Regardless, though I am nice-r to myself, in no way am I nice.

2. Know when to hold ‘em: So I still like to fight, but Dave and I are good about holding our tongues and I try to not speak to him in sarcastic tones because I truly do not want Addie to pick that nasty habit up! This is something I am still working on, but I think I will always have to be conscious of my words and actions as I’m a bit of a sailor-mouth with a temper.

3. Earn it to own it: Nailed it! I took time for myself each day to write and came up with 269 posts last year. This year I aim to write posts with just as much heart as ever… and add some time to take care of my fitness goals, too!

So there it is… Monday! I hope you have a beautiful week, Reader!!

xo

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