Tag Archives: love

Marvelous Monday

Another week has passed and another is beginning. And I am thankful for that. Many of my friends have been going through first losses in life- mostly grandparents- and have emailed me asking for advice… how to move on, get over it, stop crying. I know they ask because I lost my brother, grandfather, 18 year old cousin, father, uncle and multiple friends before the age of 21… my grandmother passed away a few hours before I needed to be in work. I still went. I sold 2 gowns before my boss asked me what was up. When I told her, she began to tear up and told me to go home. Dave and I have a cruel joke: I met his family through weddings. He met mine through funerals. When it comes to funerals, I’m an old pro at 29… and as the years have passed, my coping skills have changed, though not the steps to heal.

What are my steps?

1. Let it happen.
The  tears, the anger, the hurt, the pain, the laughter that makes you guilty to have, the fear of all the memories you think are fading, the idea that you can’t remember  certain facial features or their voice. Just let it happen.

This Monday just being thankful is enough. Telling people to enjoy every moment of their lives is disingenuous. There are things that are not enjoyable- that is life. However, reminding ourselves after a long day, a particularly trying day, that we are still here, to heal the hurts we may have made and mend the fences that we can, is all we can do. It never gets easier when we lose the ones we love, but it grows different in us. The things we thought we forgot? They come back. After 15 years, I suddenly started to hear my Dad’s voice in my dreams again. It’s not as deep as I thought it was, but there it is- clear as a bell- lulling me back into a dream I might otherwise have  awoken from.

Here’s to another week. Live. Love. Laugh. And, damn it, cry if you need to!

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This week, my brief, but important dwarfism fact is more of a life lesson to all. Be conscious of your words. When approaching a difference, so not assume that everyone who is different is suffering. Very few people I know choose to describe their everyday as suffering. I embrace the fact that dwarfism is considered a disability. I do not fear what is fact- I choose to learn how we can improve and change our society to better include everyone- regardless of differences. What I choose to change also includes perception. My daughter smiles… All. The. Time. Even when we were told her right ear was pretty infected on Saturday, she was all smiles. In general, she is a tough cookie, but like most kids she lives a happy life. It is… well, it’s normal. How so? She’s never known anything different- and that, by definition of the word and subjective experience. The welts that make other parents cringe, the therapies, the extra appointments- that’s life. That’s not suffering. Suffering should be held sacred for the hardest moments in life- those that truly make us question the world. Suffering is not being different.

Please, choose your words wisely.

*  *  *

And last but not least, my random for the week. Again, words. My friend, we will call him C, works a fairly stressful job. It’s all people-relations and working with clients. Pleasing those that have too much money to spend, or too little and spend too much- a fine line between fun and babysitting for adults. He’s also a homeowner, small business owner and landlord. In short, he’s no fool. At his place of business, however, he’s often disrespected- even by well meaning customers who feel like they’ve made some kind of quick friendship and thus make an innapropriate remark or joke.

On one such occasion this weekend someone told him he needed to grow a thicker skin. He’s a funny guy, blue eyes, Italian, well-educated, a little over 6 feet with a good sense of humor and healthy respect for himself and others… but to this comment he replied that his skin was thick enough, perhaps he simply deserved some respect. While you think your words are innocent and that you’re in the right, remember his thought.

Happy Monday, Reader! May your week be full of thanks, love and respect.

love,

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Mother

It’s such a simple word.

moth·er
ˈməT͟Hər/
noun
noun: mother; plural noun: mothers
  1. a woman in relation to a child or children to whom she has given birth

verb
verb: mother; 3rd person present: mothers; past tense: mothered; past participle: mothered; gerund or present participle: mothering; noun: mothering

  1. bring up (a child) with care and affection.
    “the art of mothering”

This is how a book of words, all the words we recognize in the English language, defines the most important woman in my life.

So how would I describe my mother in less than 1,00 words?

She’s a rock when the whole world is on a roll. She’s the person that took responsibility over the lives of 4 other humans when her partner in crime, my father, passed away. She is what a pillar of strength hopes to embody to define itself. She is power. Beauty. Courage.

But she never had to try to be these things. That’s the most amazing part. Life never happened to her. She happened to life.

I grew up hearing: no one makes you feel a certain way.

Which is why I do not choose the love I have for her. It’s just there. It’s all in my heart and soul. It spills out as I bounce questions off her, call for advice or press the right buttons so Addie can hear her Mima’s voice.

I cannot help but love where my heartbeat first originated. I love you, Mom.

Happy birthday.

xo,
FTN

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Approved

I just want to say how very sorry I am that you have to endure such ignorance for simply defending your values. Whether or not anyone agrees with political correctness, it sure doesn’t harm them to buy a jar of pickles with a different name, and it’s sad that they feel their abusive words are somehow more in good character than your pursuit to give your daughter a life where she can be seen as a person of equal standard. Quite frankly, people like Ed up there are showing a great example of why movements like this are important. If everyone were to treat others with dignity and respect, we wouldn’t have the need to watch so carefully for things that may negatively affect the lives of our children. I’ll admit, at first I thought that the idea of being outraged over the label was a bit silly, but when I see the ignorance that people have displayed over it, I find myself fully supporting you.  Your act was done out of love, and theirs is done out of spite and creulty. Ed, if you’re reading this, you personify ignorance. There is no other reason for you to harass this lady than the fact that you are a sad, pathetic human being who would rather teach hatred, bigotry, and ignorance than teach your children to judge only on character.  This is probably a good thing for you though, because if they did judge character, they’d see what a horrible human being you are. You’re right about one thing though, this is america and we are free. Therefor, this mother is free to love, honor, and protect her child, and you’re free to go on being an idiot. Everyone wins. Chelley, you are an amazing woman with an amazing family. I know your daughter will learn humility, modesty, and good will toward all of mankind, despite the lack of those attributes in many others. You should be very proud, and I am proud of you for being so courageous as to fight for your values even in the midst of so much ignorance. My love to all.

This comment [sic] was posted in my “Pending” comments folder a few days ago. I read it, and reread it. I feel the waves of impact as they roll me over again and again in a sea of perplexing rises and falls. Weeks go by with nothing, then a flurry of vapid statements and pure evil comes spilling into every social media account I have.

Then I read something that is amazing. I call them transformative stories. A telling of a personal tale, woven into my own. How one person chose to stand for what they believe in and thus came to support me, as a mother, as a woman, as a human. As a human.

The words: “Therefore this mother is free to love, honor and protect her child…” Yes, gosh darn it. I am. I will.

I will give her the tools to overcome adversity, but I will not teach her that words cannot hurt, for who is she to then not use them to wound, herself? I will not teach her to blindly turn from ignorance and hate. I will teach her to change. To advocate. To strive for more. Because that is evolution. And I will not raise her in stagnant waters, to breed more ignorance and hatred.

Again. I find myself humbled, appreciative and honored to have so many wonderful people as readers and supporters.

lots of love and thanks,

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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!

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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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Filled with Thanks

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Marvelous Monday

This weekend was a blast!!!!!

I am SO thankful for my inlaws and their never-ending patience! Living on a street that is great for yardsales, my mother-in-law and I decided to unload our stuff before the Winter… pulling Dave and my father-in-law in on it. With lots of planning, searching, basement cleaning and organizing, all of our items were in the driveway by 7am on Saturday. The cold morning was replaced with sunshine and laughter, as my my in-laws and I hung out. Yep. Like we went way back. Like they were my own parents, or that they had known me forever. It was awesome.

Eventually Dave and Addie came (the babe sleeps til 9:30 most days), and Gramma went to be Gramma and Grandpa played with the cousins. But those few hours were awesome! We had a decent day, so right before breakdown we decided to set it up again the next day. Our haul? Less than $20, but again… just the three of us hung out over chilling coffee, a nap in the driveway (yep, me), homemade breakfast sandwiches on my FIL’s freshly baked bread (SO good!) and talks of $25 tea sets. It was an awesome weekend (except for the Philadelphia Eagles’ loss), and I hope that we keep up the [new] tradition of the family yardsale!

YardSale

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This week I just want to celebrate! I got the proclamation declaring October Dwarfism Awareness Month! I shared THIS post with the wording… check it out! Let’s get all of our states to make the same declaration!

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Lastly (like how short this one is this week? …don’t get used to it!): My random of the week is don’t give up. When Addie was first born, there was an instant connection with us. More than love- a lifeline- before she was born, I was, in fact, her lifeline. Watching Dave as a new dad wasn’t like the movies. He was tentative, but not nervous. He was in love, so in love… but I was scared that same connection I felt wasn’t there. Fast forward to our toddler. The one who is scooped up by Daddy and flown out the front door in sheer excitement to share the full moon with his girl. The one who has breakfast dates with Daddy, sans Mommy (who is delivered her coffee in bed). The girl who loves for Daddy to read books but screams for Mommy to put her to sleep… the slight watering of Dave’s eyes as he passes her off to me. The girl who runs after her Daddy (and puppy), but never has to ask him to wait- he’s already running back to her. The bond is there. It was there all along. I didn’t see it because I was blinded by hours of nursing and pumping, baby food making, diapers, doctors’ appointments and one class or another. But when I stopped and observed I saw it. I’m glad I didn’t give up on him. I knew he was the perfect man (for me) and would be the best father (for our child…ren?).

FamPics

Happy Monday, Reader! May you find new appreciation, empowerment and connectivity.

Love,

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Some Call it Luck *Trigger*

While at the LPA National Conference in DC, I attended a few workshops, one of which landed on the controversial topic of limb lengthening (ELL). While my post is NOT intended to be medical advice, it is intended to help spark a discussion. As a parent, I do not think ELL is right for our family. Let me repeat- OUR family, as in Dave, Chelley and Addie. Also not right for our family: living in a swamp, being fans of wrestling, tattoos before the age of 18, or book burning.

I can remember my youth… those days I spent counting calories and wondering if the package said “0″, what was in the food I was eating? I decided that I would punish myself no matter what. I think of ELL like liposuction for an average height woman with a beautifully imperfect-perfect body. The first time I came home and told my mom I wanted lipo, she laughed. I threw up lunch the next day. and many days after. I wrapped myself in bandages to try and trap the fat, took diet pill after caffeine pill downed with coffee and energy drinks. I battled disordered eating, diet pills, and the cover of every magazine on the book shelves. Who am I to judge someone who has the courage to go out there and have multiple procedures to change the way they look with reason? Do I disregard concerns that will someday surely haunt Addie? If I ignore her pleas, will that lead her to the sane extremes I went to as a youth?

There are so many things that run through a mother’s head the moment she hears, “it’s a girl.” Pink and bows and sugar and spice… and S#IT! All those moments of insecurity come running back. While laid back on a table with someone rubbing jelly all over your belly you remember all the talk, laughter, pointing and moments that brought you the most insecure moments of your life. Being a girl isn’t easy. In this light, I choose to celebrate more than Addie’s difference, because difference is just a state of relevance in the moment you stand in. Her brilliance, laughter, charm and style:  I WILL. As for dwarfism? I will celebrate her physical appearance. I don’t choose to, it’s something innate. The way her curls frame her face, and her smile infects my depressed heart to light. The way her tiny hand makes its way into mine before we wake in the morning. The way her legs curve and dictate her authoritative walk. The protruding tummy she so proudly pats when she is hungry for “yumm”.

I will celebrate her for all that she is. Her fingers wrapped in my hair, those elbow dimples, and the curve in her back- all making her uniquely beautiful. They make her Adelaide.

But this is about the National Conference… so let me start with my insecurity. A woman. There was a woman who walked around with an iPad or Tablet device trying to show pictures of her son. She was even at the workshop that sparked the initial writing of this post. While the workshop wasn’t about ELL, there was a strong overtone at the end, and this woman would not let go. I was uncomfortable when I saw her in the room, and my discomfort was never eased.

I appreciate ALL opinions, but ask me once, ask me twice, ask me three times… you’re out. I felt like I was under attack, even though the woman wasn’t following me, per se.

So… what did the interlude of this workshop teach me? Before I tell you, I want you to know that the panel of this workshop was made up of doctors and their assistants. There was a lifetime of experience before me and I wrote as fast as I could.

With limb lengthening, which I will continue to refer to as ‘ELL’, doctors usually want to begin the process at age 4 or 5. The major issue with this is that age 11 is around the age when you can truly engage a child in a conversation that holds weight and consequence comprehension. One panel member feels that beginning the process at its crucial time (ages 4/5) is malpractice because the child cannot truly assert his or her feelings. I have to agree.

My issue with beginning anything… EVER… is that a child who is bound to ELL has dedicated their mobility to that as well. Swimming, running, swinging, playing with friends in the cul de sac, or late night bonfires on the beach are hard to accomplish if possible at all. Being a kid should not be defined by staying in place or physical therapies… and putting yourself through that for adding inches to your arms and legs (just arms and legs.. feet and hands stay small) doesn’t seem quite as happy as a childhood full of experience!

There are a lot of risks with ELL, too. Things like trapping nerves, paralysis, narcotic addiction, seizures, risk of becoming a quadriplegic… People have died. Yes, died. There is always the possibility of psychological impact, where I hope that the screening before the procedure even begins would alleviate that risk… but changing your whole body, causing deep scars that will be your cross to bear forever, while changing your identity from a Little Person to not-quite-average is certainly an exercise in mental strength. But there are many successes, too! In fact I feel blessed to know a family who has been so open with their experience and has given me a lot of education to other reasons (beyond physical) to participate in ELL. In fact, the young woman who has so generously shared her journey amazes me, for I would not have the strength to do all she has done to achieve such success (inches). The many procedures and “down time” terrify me, however, with surgeries, waiting, therapy and then doing it all again. With this, the feet cannot be changed- so I am concerned with how different one would look with long legs and the feet of a child. After years on the legs, the arms are lengthened, which offers the least amount of complications and pain with most potential for functional benefit. Again, the hands cannot be changed. If you’re small with small hands and feet, how does one feel being less than average height, but taller than an LP with LP hands and feet? I feel torn as to how I would feel, myself, but confident that we are all put on this Earth for a reason and that reason is to be unique. I am heavily tattooed and hope that if Addie wants to make body modifications, she choose ink over years of pain and physical impairment… but at 16 months, Lord knows what she’ll throw at me at 16 years! I know I am equipping myself with the thoughts and knowledge now to answer her questions, and am trying to learn everything before the day she comes to be so that I am not judgmental of her inquiry.

Then… there’s the philosophical discussion. Should ELL even be offered. If so, when? And why? In America, only about 2-3% of LP participate in ELL, while in Italy and Spain, more than half the dwarf-population undergo the long procedure. There are many theories, but one remains poignant…
La bella figura. Beautiful figure. It’s a folk philosophy, a way of life, being beautiful. This idea extends to the thought that what you’re like on the outside reflects your soul. Could this la bella figura be controlling the subliminal belief that a person has a twisted soul because of being a dwarf? Would straightening and lengthening the body make one more aesthetically pleasing and thus have a more beautiful soul?

To answer all the questions we have as individuals and as a society, we need science. Research. A series of longitudinal studies showing us all of these things and more, but there are none. Perhaps the range is just too great, the “condition” too rare, the science too expensive or the genetic difference too irrelevant to society. Whatever the cause, the effect is less information concerning ELL- facts, science. Not theories or My Side and Their Side. Real science by an unbiased group or objective party. That is just not there, and because of that, this piece is written solely on what I heard at the workshop and my own personal feelings as the mother to a 16 month old child with achondroplasia dwarfism.

Lastly, we were left this this thought: Are LP in this country lucky that that we think we should be changing the environment not changing the people?
I don’t think it is luck, I think it is evolution. We are a young country made up of a melting pot of people. While we are not the best, greatest, most monetarily responsible country- we have some attributes that make us the fun-loving, adorable, not so bad to deal with kid sister of the UN. We accept many people. Sure we have a ways to go, but for the most part- watching people go under the knife for looks (plastic surgery), weight loss (lipo/gastric bypass), or limb lengthening is something that strikes us as odd- regardless of the outcome. It’s something many of us joke about… sure we want to look more defined, thinner and taller, but we love ourselves too. Somewhere deep inside… and usually others love us, as well. Accepting our family members, be they big, small, fat, thin, Republican, Democrat or fence sitters Independents makes us human. American human. It’s not luck, it’s love.

Be what it may to you, we are lucky to have such diversity in our community- that’s for sure. I open this up for FRIENDLY debate and discussion, and ask that the comments remain impersonal and general. This is NOT a place of judgement- NO ONE is wrong in their personal thoughts about limb lengthening. If you want more information, please search for it… there are a lot of happy and healthy people out there (and limb lengthening as a whole is used for a number of differences, not related to dwarfism, with great success). If undergoing ELL is something you are interested in for yourself or someone you care about- please seek treatment from a KNOWN facility.

Thank you for reading.

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

Marvelous Monday

And so Monday begins…

Tragically, the actor who played Finn on Glee, Cory Monteith, passed away Saturday. This is not the first or last (potentially) drug related death of a celebrity, and while so many are left scratching their heads, I am not. Many friends have posted and tweeted about how having that much money should be enough to cure someone of their addictions- sadly, that’s truly not the case. Rehabilitation does not happen from money thrown at the offending addiction- whether it is drugs, alcohol, cigarettes, an eating disorder, cutting, shopping, sex… The list could go on forever, but the solution is never simple. Inner strength, the true desire to quit and support are what heals a person.
It’s not just this week, but in light of tragedy it brings forth my thoughts: I am thankful to be from a family where this inner strength is no stranger. Each one of my family members has battle wounds from fighting fears, some addiction (I quite smoking cold turkey after 12 years) and personal demons- we may falter, but we never let each other fall. The Worth men and women will always stand- even if we aren’t holding our own weight, we will always have a hand. That is what makes us Worth Strong.This crazy tribe I grew up in is a group I didn’t know the power of- but seeing all that we can accomplish, all that we can dream and all the stars that we force into alignment has proven to me that I have a lot to be thankful for. Without having to say more, thanks for sticking by me and showing me how to do it- all of it.

 

This is from the book I Believe in Me: A Book of Affirmations (Connie Bowen) that I read to Addie every week.

This is from the book I Believe in Me: A Book of Affirmations (Connie Bowen) that I read to Addie every week.

My dwarfism tidbit of the week: GET TO KNOW YOUR DISTRICT!!! LPA has proven to be invaluable to us in the first year of Addie’s life. Not only does Addie have some amazing friends, but we do too. This weekend was the Newport Kite Festival and we were hesitant to go due to rain, until my friend Christine said: ON OUR WAY! She lives two hours away… I knew we were going after that!

kite festival

I first met Christine and Joe (her amazing hubby) last year during a District 1 trip to Mystic Aquarium. I felt an instant bond- with both them and their girls B (who is also achon) and her little sister A. I cannot tell you how these friendships will help parents, new and seasoned, in navigating the ropes when it comes to questions, support and which box of cheap wine is the best. Seriously- these friends look out for me like family.

If you are new to LPA and the dwarfism community and are wondering where to start: Your local chapter is the place!

Lastly, My random. This Monday I ask you to take a moment and hug those around you. Wave hello to your mail person and ask them if they’d like water. Let someone go ahead of you without honking your horn and flailing your arms.

Kiss your loved one goodbye.

Last night, as I finished my last bite of dinner and took a sip of wine, my phone buzzed. Mom. The text was awful. It was only a few words- a short story- but it said it all. My neighbor had unexpectedly passed. Twenty-eight years of knowing this quiet man, who had a beaming smile, stood tall but always made you feel tall too, who always made a connection with those around him, who loved neighborhood gatherings as much as weekends on the green, who was always there even when we didn’t know, who held Addie in infancy and told me she was perfect. He was gone.

I don’t know why it feels like I lost another piece of my Dad, but all I can think of are my neighbor’s children, like they’re my age when I lost my father. They’re not. They’re older now. Twenties and thirties. But we are all babies. We aren’t ready to say goodbye. Are you ever?

This sudden loss has left me struggling… wondering how I will get home to say goodbye, to kiss my brothers and sisters from just a house away- to make sure I have done what I can to say goodbye to my neighborhood dad. I know we can’t afford it, so while my brain was wracking itself into a down-spiral, I laced up- bum foot, shoes with holes, in the dead air laden with humidity, and ran.

2.4 miles later, as I rounded the corner, fully intending to loop it again, the rain began to fall. He was telling me to stop. It was OK. I had done my piece. He was watching me. Running is back. Therapy is a must… and the road is the only one who can provide what I need.

Through tears, I felt the rain. Thank you for looking out for me.

Through tears, I felt the rain. Thank you for looking out for me.

I will always miss you, Ed.

Don’t Grieve For Me For Now I’m Free

Don’t grieve for me, for now I’m free
I’m following the path God laid for me.
I took His hand when I heard Him call;
I turned my back and left it all.

I could not stay another day,
To laugh, to love, to work or play.
Tasks left undone must stay that way;
I found that place at the close of day.

If my parting has left a void,
Then fill it with remembered joy.
A friendship shared a laugh, a kiss;
Ah yes, these things, I too will miss.

Be not burdened with times of sorrow
I wish you the sunshine of tomorrow.
My life’s been full, I savored much;
Good friends, good times, a loved ones touch.

Perhaps my time seems all to brief;
Don’t lengthen it now with undue grief.
Lift up your heart and share with me,
God wanted me now, He set me free.

Anon

Tell them you love them.

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Filed under Marvelous Monday, Parenting/Family/Lifestyle

A year…

Last year I was sure I’d lost all control of my bladder. This year, my tear ducts sprung a leak. Where is my baby? But really… on April 15, 2012, I could have sworn I was peeing my pants. Happily, that wasn’t the case… Addie was just trying to make her way out, and I was relaxed and ready. I’d done everything the classes told me to in preparation, and I was ready for: yoga, birthing, breastfeeding, care of a newborn, care of a new baby, preparing your home, first time pregnancy group- the list goes on. I was truly equipped for this thing they call parenting.

And yet, no one prepares you for how hard birthdays will be.

Yesterday was the last morning I woke up with Addie under a year old.

Berry-covered baby!

Berry-covered baby!

I woke up to this girl on the pillow with me... and I cried.

I woke up to this girl on the pillow with me… and I cried.

She had gotten up early and Dave took her downstairs for her fruit and milk breakfast, and then brought her back to bed with me. She crawled from the middle of the bed onto my pillow and fell back asleep. It was a perfect morning- as most are- with my sweet girl.

We spent the day with a friend, went for a walk in the woods, and another with Dave when he got home from work.

The day before one!

The day before one!

And as she was going down for the night, I had a sinking feeling in my stomach. When I wake up tomorrow, she’ll be a year.

Newborn

Dimery Photopgraphy

 

So, here we are.

Cake smash

Dimery Photography

When I began to think about this post, I had a list of a million things I missed… but in the wake of Boston, there is just too much to look forward to  in life. While so many things will change, so many will remain the same. Instead of a list of all the things I miss, I paired it down to these: As a newborn, Addie would make a noise that sounded like inga, when she was hungry. Like clockwork, she would say, “inga”, and I knew that she was ready to nurse. As she got older, she stopped saying inga and began to sign for milk- which she knew was on the way because she put herself on a schedule. At 12 months, she says mummm, which oddly means yum. I know one day, this too will fade, but I love having a new sound to look forward to. I miss the 3am feedings, but she hasn’t woken for a nighttime feeding since she was 3months, so I guess I need to get over that. Lastly, I miss sleeping with her every night. We co-slept for 8 months and 30 days. I have a letter half written to her about that… it broke my heart when she laid down and went right to sleep in her crib. Every night since January 16th, she’s been in her own bed. She self-soothes when she wakes by “reading” or turning music on. She’s growing into her own person, and even at a year, sometimes she doesn’t need me. The good part is: she still needs me a lot more than she doesn’t.

Last year, the day of the Boston Marathon, I was sure Addie was coming- she was going to be my marathon baby. My water had broken the night before, and it had been a long labor thus far. But she stayed in. I tried so hard to relax and breathe- I went over 30 hours without medication or any interference before agreeing to an epidural to sleep early Tuesday morning. When I woke up a few hours later, I felt my contractions and was told it was OK to push. Three hours later, she was in my arms. The 38 weeks I’d waited were for this perfect being I was holding to my chest.

Now I’m watching her sleep, and I want a way to put her back in. I want to know that she will always be OK- that I can protect her from the unknown. I’m unsure of the world I brought this child into. I was going to bring her to the marathon yesterday, but after an insurance SNAFU, didn’t have the money to spend. Does God work in mysterious ways?

Yes.

In this year Addie has shown me what unconditional love is, and why my own mother never gave up on me. She has shown me patience, generosity, what being proactive really means. She’s shown me how to throw caution to the wind and blog to the world about my experiences. She’s been my anchor, when I was supposed to be hers. She is the reason I know how to laugh at myself. She has shown me it’s OK to smile while you take it all in stride, and that sometimes the news you expect isn’t the news you will receive. She has shown me that dwarfism will not define her, or us. She is the reason Dave and I were brought together.

From the hospital
Addie at Hosbro

To best friends

Hadley and Addie train

We have created a new extended family that would not have been possible without Addie’s inner beauty, sparkling personality and her being exactly who she is. We are blessed, we are lucky, we are thankful.

Suddenly, in the last few weeks, her waves have gone from backwards to front. She sings hi at passerby. She wants to get down from your arms to hold your fingers and walk. She takes the brush to fix her hair. My baby girl is growing out of her babyhood, and I could not be more proud to be her Mom (and Dave to be her Dad).

While we cannot protect her from everything, I know that we will always do our best to keep her safe, and she will always, always be surrounded by love.

Happy first birthday, sweet girl. I love you to the moon and back.

Addie and mommy

Dimery Photography

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Filed under Milestones, Parenting/Family/Lifestyle