Tag Archives: community

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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Filed under Achondroplasia

I Take it Back

Let them eat cake.
Well, not my child, but whomever choses.

Recently I reposted THIS article from HuffPost Parents on my personal Facebook page. I’d love to be featured there, but I won’t do it via parent wars. So here, I offer my rebuttal:

At first read, this opinion holds a lot of water with me. Why go so crazy for every holiday? I don’t see the point. But hey… that’s not my family. I also don’t see why people drive $100,000 cars, hate tattoos or still have flip phones. But judging others won’t change them, it just makes my point of view narrow. I see how some holidays have gotten, for my family, out of control. So I choose to not make traps for leprechauns or host color-coordinated Easter egg hunts. This doesn’t mean I’ve sworn off Pinterest or the fun crafts that come with the holidays, it just means that I don’t stay up until 1am for every holiday making a path of coins or creating a huge mess from a Christmas elf. But you know what? I wrote THIS piece over Christmas about why I don’t want to be judged for my Elf on the Shelf. My parenting my child does not affect you. I am not teaching hate, bullying, judgment or harm. I am instilling memories, silly times and having some fun myself- all in a way that does not overwhelm me. I defend my creepy little Christmas doll because he adds some more wonder to the holiday. As with the rest of our celebrations, we incorporate food, but not candy or sweets, and like to teach a lesson- as simple as a Bible verse or learning to save the change from our pockets. Another child gets 8 nights of gifts, and sure, that seems unfair to a child who only gets one… but there is a story, religion, culture and familial beliefs surrounding all celebrations. It is not up to our children to dictate how we observe holidays, or for other parents to redefine our celebrations.

#elfontheshelf Jingle #aisforadelaide

Who am I to judge you, parent who takes the time to handcraft Valentines for each class member or makes fondant topped crafted confections personalized for your child’s birthday? I am not one to pass judgment on anyone.

If I choose to make an observation, it’s that any child who doesn’t have what another child does and has a tantrum because of it, does not deserve a stressed parent who will appease said child. It is a life lesson- a family lesson, if you will. “We do not celebrate by doing x, y and z for the holiday.” End of story. I know tears and a few “it’s not fair!” arguments will ensue, but it is! Fairness is celebrating with your family as your family does.

When we look to others to make ourselves feel better about what we, as parents, do differently, we are creating this rift we claim to be fighting against. Our lives are all different from each other. We can’t preach love and acceptance to our children if we, ourselves, do not believe it. I am not a lazy parent if I choose fill-in Valentines, and I am not an over-achieving parent if I choose to make handcrafted gifts for all of my child’s teachers. I am simply parenting as I do. Let us release our insecurities. Let’s do more than teach that difference is OK- let’s believe it.

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Filed under Parenting/Family/Lifestyle

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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Filed under Educate/Adovocate/Make Change

Marvelous Monday

What a wonderful weekend- jammed packed with all I am thankful for and all things dwarfism! I have mentioned LPA about a million times, and all the support they offer to the LP community, but there is so much more than that.

There are lifelong memories made by friends who see each other a few times a year. Parents who lament all the silly things that we get that no one else truly does. Not life-altering stuff, but finding shoes that fit, are cool and also comfy. Why moving a faucet can make life easier for your child. How to hem jeans. It’s the same old parenting things we all think about, but rarely do we encounter so many seemingly minuscule things over and over and over.

The best part? When Addie gets into a large group of kids, there are no worries because this community is watching over her- everyone.

This mama may be suffering from serious pregnancy hormones, but when Jackie and Avery (two fabulous young ladies) took Addie’s hands and walked her to their dance circle complete with other girls, and encouraged her to dance, laughed with her and never let her out of their sight, I walked away, took my seat, gripped a cup of ice water and swallowed my tears. My face was hot. My body felt cold.

#aisforadelaide #firstdance #lparegional #2014

My daughter already has an amazing life.

I watched what her Spring and Fall would bring each year, as our District regionals pass by. I saw middle school dances and girlie laughter about things that us parents would just never understand. As I sipped my water, surrounded by women I’ve grown to love in our brief, but powerful 21 months as LPA members, we laughed at my verge of crying.

#aisforadelaide #ladiesnight #LPAspringregional2014

I have an amazing life.

These moments are not forever. We have our struggles. We have some of the happiest moments of our lives without the LPA, or anything related to dwarfism. Being little, or big, or average does not define us. Having such fabulous friends, regardless of distance, giving my child the opportunity to live her life and being guided by those around me. That defines me. There is nothing like knowing that your life changes shape when you let go of the reigns and just live.

With $100 in our pocket and a cooler full of fruit, bread, peanut butter and tuna, we went to Cape Cod. It was our first regional with our LPA district. We got to ask questions. We got to answer a few. I shared a conversation with men and women. Some were my height, some were not. But the conversations were the same. Our kids were being crazy, they all needed to sleep, we all enjoyed the sunset at the banquet, our clothes seemed to be getting tighter as the New England winter ceases to end. I joked with my ladies about this and that. We all ragged on each other, shared hugs, high-fived the  kids.

Being members of the LPA has allowed us to NOT define our family by dwarfism, but to learn in a safe, well educated environment for ourselves, our daughter (and future baby!) and those who will learn from us. To balance our lives between doctors and normalcy, because at the end of each day, I am doing the same as any parent… reading 102 books before bed, watching my child guzzle more water than they consumed the entire day and praying they don’t spring a leak in the night, kissing her cheeks and watching the monitor (sure, I’m also listening for snores and leg movements, but that’s neither here nor there). Addie? She’s just like your child. And me? I’m just like you. Tired, stressed and loving every minute of this crazy, fast-paced thing they call Parenting.

#aisforadelaide #swimming #capecop #seacresthotel #lpaspringregional2014

And my random  of the week? If you missed it before, don’t forget to check out this awesome video below <3 <3 <3 (Yes… I’m a bit excited to share after holding it in for 13 weeks!!!!!)

Happy Monday, Reader!!!

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Filed under Marvelous Monday

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

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.

*  *  *

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

*  *  *

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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Just like you…

There have been an influx of questions coming to me from new parents, friends and curious people regarding Adelaide’s ability to have a family. In no uncertain terms, yes. Should Addie decide to have a family, she certainly can.

While having questions regarding a child’s body which is still in the growing stages of a toddler is unnerving to any parent, more so is the thought that people think they need to know that about Addie. I have, more than once, chomped into my tongue to hold back the words “Google it”, for a lesser aggressive, “should she choose, yes, she can have children.” I’ve even gone into detail for those who have waited for more, like perhaps there was a great folklore to spread… “Addie’s type of dwarfism is achondroplasia. In her type, for the most part, there is no issue bearing children. Her organs are the same size as an average stature person- her uterus can hold a child. Her pregnancy would go as far as about 37 weeks before she would have a scheduled c-section, and her pregnancy would be monitored perhaps a bit different from another mother, but it is completely possible should her father and I ever allow her to date.” Yes. That’s about it.

Sometimes, just sometimes, I want to snap- but I always remember that the way I present myself is a reflection of our community and how Addie will learn for herself… and curiosity is how change is made, how education is spread and how information is, at its very core, shared. So yes, Addie can have a family.

In the midst of my Summer of Questions, I happened upon a friend’s video. It was something she posted on her Facebook wall and it brought me to tears. Night after night I watched the video. Not because she’s a woman, my age, with achondroplasia who gave birth to an achon son that might one day be family (HE’S ADORABLE!), but because her husband’s loving gesture of making this video made me fill up with the same goo that Hallmark Christmas commercials incite in me. Then, as I opened another “Re: just wondering” email, I smiled. Here was my answer.

Many people ask the same questions, and while I tire of them, I have to remember the first time a question was asked, most likely I didn’t know the answer either. I am learning… learning to be a mom, a friend, a community member, an educator, an advocate. When I feel overwhelmed, or I have the thought that Addie is so different, I watch this video and remember that she isn’t. She can marry a hopeless romantic, enjoy a beautiful birth and have a lifetime of happiness, love and fulfillment whether she’s 4 feet or 6 feet. Inches and money never made someone happier than a person filled with love, support and the opportunity to create all the memories of a lifetime one could handle.

Thank you Kim and Ron for sharing your beautiful video with the world. We love Noah and cannot wait to meet!

Love,

As an aside, I want to say I have never forgotten where I was this day 12 years ago. Sitting in psych class at Upper Moreland- a TV was rolled in and we watched the second tower crumble. Thank you to all for their service that day.

 

 

 

 

 

 

 

 

 

 

 

 

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Filed under Achondroplasia, Community, Educate/Adovocate/Make Change, Parenting/Family/Lifestyle

How do you measure a year?

How do you measure a year?

I certainly cannot put a measurement on my love, and I’ve lost count of the times I’ve cried, but I know I am happier than I’ve ever been. I’m more complete than I ever thought I would be. I am Mom.
Mom to Addie.
Mom to a beautiful baby girl.
Mom to an amazing human, who can (and does) do anything she puts her mind to.
I am Mom to an achondroplastic dwarf.

Her name is Adelaide Eileen. One year ago, my husband and I sat terrified in Hasbro Children’s Hospital wondering why Addie was unable to break a fever, wake up or take fluids. In response to unrelated testing, we were told: “Your daughter’s x-rays are consistent with the diagnosis of Achondroplasia.”

I wrote about it HERE, in the first blog post.

Thursday, June 21, 2012, Addie and I spent the day at a local pool with a friend. I was hoping the slight fever from her shots would dissipate as she napped in the shade, and was sure to keep nursing her. But the fever would not relent- it just continued to rise. Her naps become constant sleep and I could not get her to latch. As Dave headed home from work, I packed Addie into the car with extra milk, my breast pump and some clothes for us. I knew Dave wanted to go to an opening for a friend’s new business. He never got a chance to let loose, so I didn’t call him. I made the trek with tears in my eyes, 3 miles to the hospital. Sitting in the ER and being rushed into admission, I called Dave and calmly asked him to come. Shocked, he left the event, pressed his foot to the floor and raced into the building in less time than it should have taken him.

It’s been a year since we went from this:

Addie at Pool

to this:

Addie in Hospital

In the 12 months since, we have laughed, cried, hugged, bumped heads, enjoyed milestones, regained hearing, made changes, more changes, and built a community that we could not live without. A community we are celebrating nationally next week and locally TODAY at the Southwicks Zoo! We are surrounded by love.

I don’t believe I had a baby I wasn’t expecting. Addie is happy, silly, brilliant, with a sly sense of humor and a mega-watt smile. She’s not like every other baby. She won’t be like every other adult. But she is mine. She is ours. And she was meant to be.

A year ago, our suspicion that something was different was confirmed.

Adelaide has dwarfism. Her type is the most common form, called Achondroplasia. There are about 30,000 people with dwarfism living in the United States. I have said it a million times, but I don’t always believe it… Addie is like every other child, just shorter. In truth, her limbs are not the same. Her torso is [almost] the same. Her head is larger. Her facial features flatter. Her spine is not the same- not in the least. Her feet seem like they aren’t growing. Her hands are small. Like really small. She is different. Sometimes I think the sooner I admit that publicly, the sooner it won’t be true. I can go on saying that she is like everyone else but small, but she isn’t. That’s OK. It’s just a fact.

She is different.

There I said it.

A year ago, I found out that she was very different.

A year ago I found out, but I knew before they told me. I KNEW.

I have the most beautiful baby girl- I never expected to be blessed in the way we have been. Of course there are struggles (almost everyday). There are alarms on machines, therapies that seem to never end, appointments that need to fit between other appointments that fit between other appointments. Paperwork that piles up and permissions (with matching filing charges) that are almost insurmountable. There are letters that inform us of denial. They go in this way time and time again:

Denial Process

We pay, we write letters, we make phone calls, we argue the point. But the good always outweighs the bad. The smiles, the laughter, the giggles and shrieks, the tears that only cease after a hug, the long nights with all of us (puppy and kitty, too) in the bed. Those are what I will remember about our first year of diagnosis, learning and advocating.

I will remember falling asleep with her on Christmas Eve, during her first celebration:

Sleeping

I will remember this face welcoming me each morning, with sweet milky breath, and a hint of berry as she shouts her first greeting into my sleepy eyes: “HI!”

That Smile

I will treasure each family moment we get and love my husband and father of this sweet girl, and future babies.

My Sweet Family

Lastly, I will remember all of the CPL drama.  I will continue to educate regarding dwarfism and work to end the use of the m-word as common vernacular in our society. I know change is hard, but telling me “no” will be prove to be more difficult. I promise.

It’s been a year. And what a year, indeed!

I’ve been able to measure the cups of coffee, the amount of sunshine or rain, the money spent and the time wasted. It’s the moments of pure joy that I cannot measure. There is no form of assessment that can quantify how incredible a year is for us. Adelaide Eileen, you amaze us, little one. Recently my friend Leslie wrote THIS post. It’s a letter I’d wish I’d been given for the statement of: hard doesn’t always mean bad.

I learned this lesson at a young age. Sometimes “hard” did mean bad, and other times it just meant a challenge. Something I was given by Him, or Her, or Who (Whom?) to remind me of my strength and courage. Not many people can relate to my life story. Not many would want to. But the reminder that sweet Adelaide chose us (she swam the fastest, after all), is proof enough that what is hard in life does not always have to be bad. It can just be different. And different can be pretty darn amazing.

Thank you for choosing us, Addie. We choose you back, everyday.

 

How do you measure a year?

 

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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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