Tag Archives: LPA

Marvelous Monday!

So, Monday… you’re back. Thankfully, my Friday this past week was pretty awesome as I spent it with my bestie and her baby girl, and NOT getting rear ended on 95 (BONUS!). I hope everyone had a beautiful weekend, car accident free, as well!

This week I am thankful for finishing. I guess this really means I’m thankful for trying, but really… getting to the end was triumphant! Last week, I ran a 5k the day after we were in an accident. It was a bad choice. I cried. My ankle hurt and I had a headache that didn’t go away until Wednesday of this week. But I did it. It was a terrible time (nettime of 34:12) on a course I’d trained for weeks… my hopes of a sub-28 minute 5k were dashed with one “just for a second” glance away from the road.

But, I finished. And I am thankful for that. I am thankful I have “it” in me to keep going.

Cox5k

As someone recently pointed out to me after commenting on Addie being small, well she doesn’t look that different. Maybe they made a mistake. I’m not quite sure who they are, but the blood work from Johns Hopkins was conclusive- Addie has Achondroplasia. This week, my dwarfism fact is that Addie isn’t that different! It seems like I preach weekly about my baby girl being able to do anything she wants and that she is just like everyone else… and finally someone agrees- no matter how inappropriate they make their agreement sound. There are people with forms of dwarfism that just make them short, yet proportionate. Others, like Achondroplasia are disproportionate with short limbs and a larger head, others have short torsos and average limbs, some are still being discovered!

When Addie is next to her peers, sitting on the floor, they are almost the same height. Addie’s torso is [almost] average to her age- she wears a 6 month top. However, when she stands next to most kids in the 11-14 month rage, she is a few inches shorter. There are other differences people have noticed- and seem totally unabashed about telling me about: her neck is short, she has lots of rolls in her skin, her sunglasses don’t stay on (the bridge of her nose is flat), she’s still crawling like that (yep!), she looks like Buddha, her head is huge (so is your mouth!)… it goes on, but please know, these are just features of the type of dwarfism that Addie has.

Truthfully, she might never grow out of some of these things, and others she may. The best part of the whole parenting game? Growing and learning [with your child] everyday! Most things people say, they mean with the same innocuous connotation as “the sky is blue”, so I try to just laugh it off. Most of the time, it’s not worth explaining more to people who misspeak. Addie is beautiful, smart, funny hysterical, loving and, like her mama, flirtatious. Sure, some things are different about her… then again, some things are different about all of us. Thank you to the people who look past everything else, into those blue eyes and see what we, as her parents see: Adelaide.

AddiePlaying

And my random of the week… sometimes you just have to let go! A friend of mine came up from DC- which she does so rarely- and I was all too excited to meet her out for lunch. Dave, thankfully, was able to come, too. We never get out and I was super happy he came!

We were seated outside at Harbourside Lobstermania, and enjoyed the afternoon on the water. The service was great, the weather was perfect and the food was pretty reasonable- although I totally should have gotten some seafood and not the South Western Salad (it was good… but I totally drooled over Dave’s fish & chips!). We didn’t sit and talk about the piled up paper in envelopes (they go by the name Billzzzz), or the unrelenting issues in Rhode Island… we talked about Dave’s upcoming business trip to Taiwan (WHAT?!?!), the LPA conference in DC where we will go out to eat at a college friend’s new place (Beuchert’s Saloon), and love, babies, vacations.

For one afternoon… we just let it all go. And man, did we need to!

Sure, Dave came home and worked all night in the basement to make up for the fact that we went out, but he was happy to. He was happy to treat his ladies to a nice afternoon and to hang out and enjoy a beer. Thank you to Alex for her awesome photo skills:

HarboursideLob

Happy Monday to you, Reader!!!

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Filed under General

Would you like peanuts?

As if I haven’t mentioned this before… I LOVE these Mom before Mom prompts. They bring me back to some fantastic times in my life, as well as reliving and remembering that sometimes life just isn’t fair and that’s OK. Thank you, Carla, at AllofmeNow!

This week’s prompt: What did you want to be when you grew up? Do you still harbor a desire to be that? When did you realize your dream was or wasn’t possible?

“My name is Michelle. I drew myself as a stewardess. A stewardess is…” Thanks to Mrs. Carpenter’s class and Career Day, I knew what I wanted to be: a flight attendant. I wanted to travel the world, be a free spirit and serve others. Sounds silly, but my bachelors is in hospitality- so I guess the desire to serve others never went away. I don’t remember too much about the day our parents came in to school tell what they did and what our reactions were (except to Geoff’s grandfather- who ran a gymnastics school I painfully wanted to go to, but was too tall by the 5th grade to ever be admitted), but I do remember the life size portraits we made of ourselves in our desired positions.

In art class, our bodies were traced and then we decorated our paper-selves as we imagined we would be as adults. I remember painting a hat on myself, and a navy blue uniform- more of a business looking suit- complete with my pin of wings. I imagined a perfect bob beneath my cap, a red painted smile and gloved hands. I saw myself becoming this:

Air Stewardess (1962)A novel by Marguerite Nelson

Air Stewardess (1962)
A novel by Marguerite Nelson

From "Star of Davida" on Blogspot

From “Star of Davida” on Blogspot

I wanted to serve people in a professional manner and see the world, and I wanted to look good doing it. Although I think my ship has sailed (or plan has flown) to pursue a career as a flight attendant, I still imagine myself as a jet-setter in my dreams. Something like this, maybe?

Illustration from 123RF.com

Illustration from 123RF.com

I suppose a conflict of boyfriend and reality both got in my way, in terms of being a flight attendant. There were so many things I wanted to do- being a doctor was high on the list- but I always found something to limit me. In this case, I knew I could never tell a parent or a child that they were going to lose the other, so I knew being a doctor was not in my future. I disappointed many teachers when I told them I would not be applying for any pre-med programs. Then, there was the idea that I would go to school for business, but that seemed too general for me, which led me to hospitality. There were so many things I could do with my degree, but I chose to focus on events. I. Love. Weddings. I love Love. I use it as a proper noun, because when it’s real love, it’s Love. I do not think you Love only once in your life, but whether you are celebrating your first, or your last, or maybe the one in the middle- I have some insane desire to help people plan their day. And so, a planner I was.

Sadly, this economy can only harbor so many wedding planners, and while the 7am-1am days wore thin on me, I drifted away from my plan of being J.Lo in The Wedding Planner. Plus, what if I fell in love with Matthew McAbs? His country-boy accent would eventually wear out its welcome, and long after the credits rolled, I’m sure I would have moved on to be with someone more suitable for me (like Dave). Alas, I digress.

I guess I made it impossible to catch my dream of applying to be a flight attendant because I was in love with a boy. One when I applied to, and decided to attend JWU, and a different one when I graduated. The idea of leaving someone for a career seemed too far-fetched, although sometimes I want to kick myself in the rear end for stunting my professional growth for two people I no longer have feelings of love for. Everything happens for a reason, and if my two feet had not been planted on the ground, I would not have married the man of my dreams.

Being Addie’s mom, I have found myself more invested in the idea of traveling- especially to LPA conferences and hopefully to DC to help make some much needed changes for our new community we call family. There are so many things I do not need and have given up without even noticing: massages, manicures, pedicures, highlights, dinners out, new winter boots, another pair of running shorts, extra minutes on my phone, movies in theater, drinks at the bar, coffees, and song downloads… to name a few- and without these things, we’ve kept up with the medical bills and everyday life. Perhaps, we will be able to get out more often, and, more-so, we will have the funds to allow Addie to have the opportunity to go to many of the local and national LPA events, and have a few custom things for her in our home.

I hope to get my MFA, and to be able to send Addie and our future child(ren) to college, to provide them with their first cars, and pay for their weddings- my dream of flying those friendly skies as a career have been replaced with different dreams, and one of the biggest already being fulfilled: becoming a(ddie’s) mom.

When I grow up, I hope to be… me.

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Filed under Mom Before Mom

Perhaps no one is wrong to be right

When a new mother holds her child for the first time, it is a beautiful thing. It is also scary. Those dark eyes, just seeing light for the first time don’t immediately recognize the woman that tenderly carried them for 40 weeks. Small hands grasp for the air during involuntary swings of muscle twitches after all those weeks curled up. This new life is being held by a woman who will do her best to raise this child with poise, grace and dignity. To be honorable, strong, yet kind and gentle. Being a new mother is nothing shy of a miracle.

When I first began this blog, it was a few weeks after I had the above experience. After over 35 hours of labor, most of which was unmedicated, the doctor told me to push my first child into the world. I saw her dark hair and I was a renewed woman. I found strength inside me I knew nothing of before, and I, though a labor of love, delivered my first child. Before anyone could catch her, I reached down and pulled her to my chest where she let out hardy screams and cries. After Dave began to speak to her and we were wrapped up skin-to-skin, she settled into me.

Weeks later, sitting in Hasbro Children’s Hospital, after 2 days had already passed during an unrelated-to-dwarfism admittance, we learned that Addie had Achondroplasia. A skeletal survey had shown positive, but the geneticist drew blood to be sent to Johns Hopkins to be sure. As I sat in disbelief, I wondered if I was the right mom for this child. I had never been more than a few feet away from her in the 9 ½ weeks she had been in this world, and she was inside me for 38 weeks and 4 days prior to that. But, this baby seemed new to me. This baby could not be in a carrier, those really deep breaths that sometimes scared me were a sign of apnea- common to achon children, and all those milestone charts I’d printed out meant close to nothing.

I was scared.

The first time I picked her up out of her hospital bed, I looked into her eyes. She wasn’t dehydrated anymore- she was nursing better and sleeping more soundly, and her irises were becoming more and more blue and bright as the hours passed. She gave me a sideways grin- all drool-y and gummy. I put my forehead against her’s and cried. I sobbed. She let me. We connected those first hours after diagnoses, not with me comforting her, but she comforting me. When my eyes could cry no more, I began to research. The information I came across, though some scary, was not at all negative- sleep issues, hips/knees/ankles, spinal concerns, kyphosis, lordosis, flat feet, fluid in the ears/hearing loss, larger head- awareness of hydrocephalus. The list went on, but it was nothing that I could not handle. I began to research doctors, as well as personal blogs for more answers. I came across two famous LP actors, Peter Dinklage and Danny Woodburn- successful men (Peter is in one of our favorite series- Game of Thrones- and Danny is from Philly- so of course, he’s awesome). I learned about TV shows focusing on LP. As we do not have television, I often miss these things. And then I came across Rosie [O'Donnell] and Chelsea [Handler] talking about LP. I won’t say much about it, Google it if you want, except that while having a fear of the unknown is perfectly OK (it’s what makes us human), dehumanizing someone by speaking about them as though they are a deviant, both sexually and in society is a sad, sad thing. There were many comments made, and discussion about giving LP jobs out of sheer pity- but I had to stop watching the YouTube video that was tearing down a community that my daughter was now a part of.

I sat down in my chair-converted bed in Addie’s private hospital room and I started my first blog post. It was June 23, 2012. I called the few people I didn’t want to learn about Addie’s diagnosis online, and then, on June 25th I posted it at 11:59pm. A is For Adelaide and Achondroplasia.

The response to my first post was overwhelming. As we came home from the hospital and I researched LPA, I saw that we, too, were a part of the community. People were emailing me, messaging me and commenting on the blog. There was support, more support and questions answered. Information about doctors, car seats, adaptive items for the home, new charts and parental tips came flooding into my life. I was relieved that I was welcome into such an amazing group of parents, friends, family of LP, as well as a group in which medical specialists actively participate. Addie’s geneticist, in fact, is on the medical advising board for LPA.

I wasn’t scared anymore. I was, indeed, the mom for Addie.

Above is my long-winded explanation of how we got here. The story about how I came across the pickle jars in December of 2012 is infamous… at least in New England and Minnesota. Again, just Google it. I’m the “crazy pickle lady”. While I don’t object to the moniker, I like to think of myself as “the woman whose initial step into making a change was blown out of proportion by naysayers who are not affected by her cause at all.” But I guess that’s too long.

There was an abundance of negative comments on each article posted online, and a few people responded to them in kindness. There was not one article, in fact, with more positive to the negatives- from what I was told. I stopped reading them after 2 minutes and never went back. The radio shows I went on, both in the US and Canada had DJs that seemed to listen, and then mock me as soon as I was off air- as did their callers. NPR, I was told, did not do this- Addie was in surgery during the piece and I missed it. Sadly the segment didn’t make the website, so I cannot hear it now. Callers into the shows were negative and mean- attacking and insulting me personally, where as I never made an assault against anyone. There were emails sent to me through the blog about the “lawsuit” and “court system”. About my “tirade” and “company bashing”. I answer each with dignity and pride. You are more than welcome to read some of them. I will post them below.

There were also comments shared with me by teenagers who found me via Facebook and blog. They thanked me, admitting to reading the story with tears in their eyes. Children moving into a adulthood who have gotten “gag gifts” of these pickles and other items with the word. People who thought they were being funny, but were, in truth, mocking- looking to injure the psyche of someone with a genetic difference. Let me tell you, Reader: It worked. Over 25 high school-ers, and parents of a few middle school children emailed me. Some wished they had done something the first time their child was hurt. I choose to celebrate their paving the road for me. These parents and I have discussed how they were coming from a place of hurt and anger and were more likely to be reactive and not educate, but vengeful. The pickles don’t hurt our children- the people who misuse the word do. Because of this fact, I asked for a change. The word has been so misused, it’s now more commonly used as a slur rather than an adjective meaning “small”. These same parents have asked when they can shake my hand and thank me. I tell them: their words are thanks enough, and I hope to meet this summer. I am no leader, I am but a lone mom walking the same path thousands of other parents have walked before, looking to make what difference I can in an (obviously) unchanging, due to hate and fear, world.

I will tell you dear readers, I did this out of love for my child. I have always been more of an outspoken person. I was meant to be Addie’s mom so I could advocate for her, and teach her to do so for herself. There was never and will never be a lawsuit regarding pickles. While this change may “cost the company thousands”, so does the sensitivity training, paid for each year, that many choose to provide to their employees. I don’t have a lawyer, nor as a SAHM do I have the means to provide one. There was never a tirade or bashing- I did not call for a boycott, in fact, as someone mentioned in a comment, there is a picture in which you could see I had more than one jar of Cains’ Pickles. Yes, I do. I support them as a company- NOT because they are making a change, but because they opened their minds and hearts for a 3 minute video and educated themselves. I do not ask anyone to agree with me or think I am “right”. Having an open mind and being educated do not indicate that you are going to do what someone suggests, it simply means being open to new ideas. While I believe the m-word to be akin to other words that our society has deemed hateful and slanderous, I respect that others do not. While I respect your right to the opinion that the m-word is not derogatory, I do not necessarily respect you for having it. I made a video encouraging change and offering my support in the process. This company responded positively, and I am currently pursuing other companies and mediums that use the m-word. Please be aware that the FCC has been notified, as of 2009, that the m-word is considered derogatory and slanderous to the LP community.

As many have pointed out, this first step was to educate a condiment company. Though a waste of time to many, it is important to me as it affects my daughter and, thus, myself. Some have told me that they were injured in war and they choose to call themselves “cripple” to “own it” and not let the stares get them down. While that is all good and well, my daughter was not made different after she went to war as an adult. She does not yet have the coping skills these people have, nor will she make it through childhood or adulthood as an average person. She is, and always will be, different. Trust me, she owns it. She, however, is not required to “own” a word that is a slur. I do not expect many people to “get it”- I myself would not have understood just one year ago. I, however, would like to think I would not have made a personal attack on another person simply because I didn’t understand something. Or attack anyone, period. What posses a person to feel such hate? Whether I would have expressed  my support, I cannot say, but I certainly would not have offered up such comments like this one posted on the YouTube video I made for Cains:

ReverentEternal

Did that make you cringe? Yeah. Me too. But, as an attack on me, I didn’t stop comments. I got an email that said:

Mike LitorisWhile I was shocked and saddened, this person was still attacking just me. And then, the last straw. I got an email alerting me to another comment. The reason I stopped comments on that video:

3asi1y

This was day 1. The same day that what was meant to be a feel-good article, was taken to a level I could not have imagined. What goes through the mind of a parent when they see this? I cannot tell you. My mind was blank. I got hot and cold at the same time. I wanted to make the world a better place and people were wishing harm on Addie. I disabled the comments and I stopped looking at my phone.

When the vibrating wouldn’t stop, I picked it up again. TheXtremeWRATH: “MIDGET PICKLES” and 3asi1y: “your kid looks like a midget” on different videos on YouTube came up as notices in my email. I disabled all comments on videos with Addie.

I read my girl her bedtime stories and we said our prayers. I put her down in her crib and she fell asleep. At 2:30am I was still awake- my heart was racing. I was scared that someone was going to break into my home and harm my child. People were making such vitriolic comments about a 10month old. I truly feared for her life. I crept into her room, lifted her from her crib and brought her in with us. I fell into a pattern of wakeful sleep for 3 hours that night.

Finally, the next morning, emails came flooding in from supporters. Emails and blog comments from strangers who have NO connection to dwarfism, and so many more from people who do have a connection- whether it is a family member, friend or themselves. These people chose to not fight “trolls” on Facebook or another website, but to contact me personally and thank me, support me, or to tell me that while they do not feel the same way- they encourage me to do what I think is right an ignore what they see as personal attacks. Parents, friends, strangers who are inspired to make a difference for what they believe in- things that have nothing to do with dwarfism, and everything to do with being proactive. People have cited this story in conferences and meetings, not to hurt, but to encourage others to seek change. One person can make a difference.

Then there were the few who found me off of these article pages- where on most, I’ve never read one comment- and into my email account. Thankfully, I have a junk email address that I can respond from and so I did. I want you, Reader, to know that I stand by my motto. To not be reactive, but proactive and educate. I will not let someone hurl insults at my daughter. Adult bullying is sad enough, when someone wishes to bully or harm an infant, that’s a whole other psychological issue I am not qualified to respond to. All the people who have commented about my husband, please save it- you’re only embarrassing yourself.  We have been married since 2009. If you’ve ever met Dave, he is a quiet, reserved man who loves his family. He works 7 days a week and provides all the love and support we could ask for.

I have been told I am what is wrong with this country and to focus on important things, like the economy. Dave, a small business owner, now spends his weekdays in a position over 50 miles from home, and his weekends at his shop. Does he want to work 7 days a week? No. But, he has a wonderful job that he got as the economy was crashing down around us, and his business was no longer enough to support a wife and child. I focus on the economy so much, that I am often stressed and lose sleep about how we will have enough retirement, can we sell the house, how much college will be, will we be able to have another baby, or what adaptive items Addie will need that we might not be able to afford, like an adjustable chair that seems like a wonderful piece of furniture for her… at $400 a pop. While there are other items we can get instead, you understand my point. I worry. I do not think the naysayers to my actions are what’s wrong with this country, I do not think I am either… but between some civil comments and some not, I think this will give you a better view- a more personal insight- as to what change I meant to bring, and what was perceived. There were many comments on the blog, specifically on the About page, as well as under multiple posts, including Let’s Change the Worldand The Dust Will Not Settle- you’re welcome to read them and my replies. I am including only the least offensive private messages, as I just bombarded you with the evils of YouTube vernacular. In light of this, actor Danny Woodburn made the remark:

Understanding the origins of words and how they have been used to dehumanize often escapes those that use the word for what they think are other reasons, other identifiers. Acknowledging under represented minorities has historically been a hard won change. I commend her for doing this through open communication and commend Gedney for their understanding. Anyone who can’t see or refuses to see what this means comes from too casual an understanding of this kind of societal indifference.

What scares me are the adults who post and think that I should be “ridiculed and more”. Or the people who think I compared Addie to pickles. What were they reading? There are people who think that the m-word on a jar doesn’t hurt anyone, but from the people who are hurt, I hear different. Just as many people were not hurt by a certain candy name in the 50′s and 60′s, other people were. Finally, please know that the people who want to “sue me” for using the song on the Cains’ YouTube video… I created the video using Animoto’s library, which gives me the rights. Please Remain Calm and Stop Being So Legal-Jargon Driven. I did not “take on” any company. I’m not sure why the attacks, but please read ahead. I thank you, once again, for all of your support (not necessarily agreement).

Lastly, I ask… just because I do not agree with you, does that make you wrong? Didn’t think so…

Thank you for reading.

SeanR1SeanR2

While Sean got a "win", his poor grammar and lack of respect for others opinions, are what led me to end the conversation- not his actual disagreement with me.
Sean’s lack of respect for my right to an opinion, are what led me to end the conversation- not his actual disagreement with me. Abusing the conversation by repeating “midget” and the past will, oddly, not change my mind. Asking an 11 year old to prove your point? You lost me.

Coversation ChrisJ

There are so many to choose from, but two these seemed to be the most gentle. Thank you for sticking with me through this. I will be running a series about other changes and bullying in the next few months. Together, we can make a difference for all children.

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Filed under #educate

Search for what?

2012 was amazing.
I gave birth to a beautiful baby girl:

Blessed Beginnings, photo

Blessed Beginnings, photo

She was diagnosed with dwarfism, and we became a part of a wonderful organization we consider extended family:

LPA

LPA

And I began this blog with all of you amazing readers and followers!
IMGx_7853And so, as I recap my year’s stats, I look to the search terms and I am SO excited to see many of them. Many people landed on my site searching for charts, medical information and generally looking for A is For Adelaide. I am so proud that people came to my page when looking for milestone and growth charts- it’s why I made a page specifically for these things. I want people to get the basic information they need, quick. As a parent, when we received Addie’s diagnosis, I wanted information, and I wanted it in an easy fashion. While I hope that parents come back and read my blog, I want them to get the answers and info they need without having to read about Addie to get it.

While that’s all heart-felt and just what every blogger wants (readers who come to their page just for what they’re looking for), we too, rely on accidental traffic. Hoping people stop by accidentally and stay on purpose. I know this happened from a few readers who have contacted me to say they their family member was diagnosed, and they searched random things until they came across Addie’s page. Now- they’re hooked on her. I love hearing how other parents, aunts, uncles, grandparents and friends are watching Addie grow up and using her medical information and daily life to navigate their own.

Twenty-three people came to this blog searching for these terms: beautiful people with dwarfism, beautiful people with achondroplasia, miracles with achondroplasia, cute baby with dwarfism and cute people with dwarfism. I have to say that Addie is, indeed, all of these things.

Then, there are those terms that make you go… WHAAAAAAAT? As in, what did you mean to search for with these terms? Things like tall beauty big breast belly tattoo, cute tattoo’s on there’s your hand, and baby hands out of shirt. I just scratch my head. These three terms led to four hits on the site. Hmmmmm…

I was elated when I saw that there were numerous people searching for craft projects that also come to AisForAdelaide! I have a broader reach- hoorah! I was also puzzled when I saw lots of hits for Adelaide and different foods. Then I got it… people were searching for food stores in Adelaide, Australia. HA! I hope to take Addie there one day… and if I ever need frozen cranberries in Adelaide, I will not search on this blog!

Lastly, the top 7 strangest search terms, in no particular order, bringing in a total of 20 total hits:
1. sexy sweat
2. sweat
3. my sexy mom
4. sweat sexy
5. exiled mothers
6. sexy mom
7. sexy mom runner

I couldn’t make these up if I tried. But, I’ll take the last one as my own description, please :)

I hope 2013 brings more searches for the good stuff, the “meat”, as I like to call my more-medical information. But I also hope that people come looking to learn about Addie. To see that a child with dwarfism is just like their child in many ways, and not in other ways, too. I hope people come looking for a new crock-pot recipe, what movie moved me to tears, if there is a new toy that their child needs to have, or to see if I’ve gotten my butt in-shape for another half-marathon. I hope family across this country keeps coming to see this little beauty grow up. I hope friends keep coming to share the experience of parenthood with me. I hope, most of all, to keep educating through my experiences, about dwarfism.

Lastly, I hope when you search for true love, happily ever after, or miracle you see AisForAdelaide at the top of your search.

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Filed under #educate, Community, Parenting

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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Filed under #educate, Community

Supporting District One!

As I hope my readers know, October is Dwarfism Awareness Month! I am so excited to be a part of such a loving, welcoming and diverse community. I think Awareness should be replaced with Celebration! I celebrate Addie everyday, and having a whole month to do so is great! I am here to educate and I would love questions. Please post them here, or privately on Facebook. Beyond that, I’d like to use this month as an opportunity to give back to my LPA district.

A friend of mine wrote a beautiful and educational blog and brought the idea to the table to donate the funds of her hair bow sales to District One. Sarah has a wonderful blog, Sweet ‘lil You and sells her bows at Sweet ‘lil You Boutique.

I have also been getting crafty… I have quite a few fabrics for our scarf-bibs and the cutest model!

I will be putting them up on Etsy, but until then, please write a post if you are interested and I will contact you! They are 2 for $12 or $7 for 1. 50% of the profits will go to the district and the other half to Addie’s appointment(s) in Delaware.

The fabric I have (so far)! All bibs are handmade, thus not created 100% equal in look, but with 100% love and care. Two snaps in the back to adjust for size. Knit and flannel available.  They’re absorbent and reversible- like more than one design? We can use two on one bib, as long s they’re the same fabric! Also available as a backing: terrycloth!

1. Brown with teal and white swirl, knit
2. Grey and white pattern, knit
3. Multi-color dots, knit
4. Patchwork peach and browns and creams
5. Black and white houndstooth, flannel
6. Sparkle teal, knit
7. Multi-color pattern, knit
8. Monsters Rock!, knit
9. Lime green with purple polka dots, flannel
10. Purple with yellow polka dots, flannel
11. Green, flannel
12. Pink houndstooth, flannel

I also have a navy with gold anchors fabric… not pictured!

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Painful

A lesbian and an alcoholic walk onto a stage set…

Sounds like the start to a terrible, demeaning joke.
It is. But no one was joking about homosexuality, or being a drunk.

I hate to focus on the negative, as that is precisely what I’m trying  to overcome, but when I see this kind of train wreck, it’s hard to look away. It’s even harder to explain. There are “educated” people out there who believe themselves so righteous that they can mock another human’s right to live a normal (see: average) existence, job skills, sexuality, abilities and height based on their [alleged] phobia?

Build a bridge, ladies… then jump off. Please. For the sake of man kind, both tall and small.
Aren’t there enough self-fulfilling prophesies out there? Are there not enough people on talk shows that already hate themselves- so much so that they target others?

I find the best comedians, the ones with real talent, are the ones that can bring you to tears not making fun of a specific group of people. Rosie, you’re gay. Yay! for you. Chelsea, you’re a drunk. Yay! for you. Let me offer you both  a medal of honor. Both women have their differences out in the public eye because they chose to share. Addie and thousands of other little people never have the option to hide their difference if they want to. Walking into a room and choosing who to let in on an intimate detail of their life is not something they will decide upon, yet people choose to  mock.

Dwarfism awareness is being adopted by states, albeit rather slowly, and yet there are still such nasty people. It’s wrong to mock the gay community- I agree, wholeheartedly. And alcoholics should be nurtured to gain control of their disease, although if self-loathing jokes are what helps for now, good luck. No one can make an addict go to rehab. Does the community consisting of little people, their parents, friends, relatives and peers not deserve the same respect? Live and let live.

Let me tell you a secret, ladies. Addie, and all the other little people you so fear, can in fact get jobs; the first female president with dwarfism was just born, you see on April 17, 2012.

And thus, I have seen this video.  I actually viewed it for the first time the day Addie was diagnosed, sitting in my chair-converted-bed at Hasboro, holding my sick little girl and wondering what this unrelated, lifelong diagnosis had in store for her. Being a new parent is challenging. Having a sick baby is hard. Being in the hospital with a sick child is painful. Having your whole world (ultimately, your child’s world) change in a day, while in the hospital with a sick child is mind boggling.

Perhaps spreading this video is promoting its evil, but my true intentions are to show people who have similar feelings how ridiculous they sound coming out of the  mouth of others. There is a slew of videos lashing out at Oprah’s network for airing this, as well as to Rosie and Chelsea Handler- please search them, and heed their words: this video is ignorant, does not and will not ever describe little people and will not be tolerated anymore.

Concluding my rage and sadness, I watch Addie’s breath come in and out and her back rises and falls. Her chest puffing out into mine as she sleeps on me. She’s not your average  baby-she’s so much more, and I am blessed to have her. I breathe in as I gently kiss the top of her head, smelling her freshly washed hair, smile and breathe out.

Being surrounded by so many good people and a new community of friends- I feel sorry for people like Rosie and Chelsea. Not for being gay. Not for being drunk. Stupid. I’m so sorry they’re stupid.

And, for some inspiration, strength and a good education, check out this amazing 10-year old, Alex!

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Filed under #educate, Achondroplasia

I Knew Before You Told Me

From the moment she was born, I knew she was different. Adelaide Eileen was born at only 18 inches, with my button nose and crooked pinkies. What she was born without was what caught my eye.

27 years ago I came flying into this world with a shock of dark hair, flailing all 21 inches of my body in a fury weighing just shy of 5 1/2 pounds.  During the 3 hours I pushed with Addie, I remember seeing her dark hair, feeling her head and then seeing her little body.  She looked just like me, but, to be honest, squat. I held my little ball of baby, loving all over her and sharing with no one.

I wanted to ask the doctors a million questions- I was shocked the next day when her pediatrician measured her at 18 inches.
I knew before I asked.  I knew she was my genetic miracle. Our little package of jumbled up genes that was perfectly delivered to us.

A daughter holds her mother’s hand for a while and her heart forever.

I was so tired, but I couldn’t stop staring. She was the most beautiful human I’d ever seen.
Watching her grow, or not, led me to think something was up- but you only think to ask the doctors a question if you think there is something wrong. In my heart of hearts I knew there was nothing wrong, just different about my little Addie. Then I read all about it. Her head was big. I was so scared. Could she have hydrocephalus? I researched all I could. I took Addie to her 2 month appointment and mentioned it to the nurse doing her measurements. She inferred that it was something she was going to mention anyway, due to her head circumference growing, and my heart sank.  I wanted to hear “don’t worry about it.” But, as you know from my first post, we ended up leaving that appointment with a script for a ultrasound of her head and x-rays of her long bones.

I took her home, undressed her and examined every inch. I saw her inner thighs and how small her hands were. The non-existent bridge of her nose. The way her legs bowed out. I saw her face, with those shining, deep violet eyes staring up at me. And she’s perfect.

After her diagnosis, Dave and I told a few people. Looking for initial reactions- a way to gauge our responses to people and learn what kind of reactions we would be fielding. And, as if getting unexpected news wasn’t confusing enough, the other shoe dropped.
People said they were sorry. Dave and I found ourselves trying to stop people from saying the wrong thing. Did we tell the wrong close friends? Was it something we said?

Nothing is wrong with her. Why are you sorry? We’re not.
It’s not unfortunate. We’re beyond fortunate to have  be chosen by this baby girl.

I knew she was the most beautiful girl from the moment she was born. She is loved to the core- and being so small, that’s a lot of love per inch!

I knew before they told me. I knew she was going to be the best thing to ever happen to me. I knew it. And I love every little bit.

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Corporate America. There’s Hope.

I was disappointed.  Using a baby carrier was amazing to me. I was a baby wearing mama. Holding my little girl to me while I did everything from the dishes to walking the puppy, felt so pure and natural to me. I love the Bjorn which has more support, but the organic look and feel of the K’Tan was just what I wanted, and I was lucky enough to have a friend who purchased it for me!  I used it once, but Addie was so scrunched in it, I decided to wait to use it for a few weeks; then we learned she was an achon baby, and my little miracle could not use a carrier.

Scrunched Addie (see above)

No carrier.

I walked into the small local shop where I got the K’Tan. I explained that for medical reasons Addie would not be able to use it, and that it was clean, had all the pieces, it was in the box and had the instructions and warranty card.  The woman behind the desk glanced at me, her eyes darted to Addie, then to a piece of paper, where she was writing a note. “Your name and number. “ *** “I’ll ask the owner and call you later, but I already know the answer is ‘no’. We don’t take anything back that’s been out of the box.”  I was confused, as the carrier is clean, and there is one in the store, on display- out of the box, that they will sell. I assured the woman that I just wanted store credit, but she seemed to be distracted, so I wheeled the stroller in a k-turn motion and walked out.

I left the shop feeling dejected.  I would have loved to shop in this store again- support a local business. I was sure that the owner would call, or understand, but a message, “Hi Chelley, this is Xxxxx from Xxx XxXx, I spoke with the owner and we can’t take it back. Sorry. Bye.” Short, not sweet and not helpful. Instead of helping a local mom at an already difficult time, the almighty dollar takes the cake.  Instead of spending a few hundred there over the next few years, they made $74 on one sale. One time and one time only.  What a disappointment.  I would wanted a call from the owner (this truly is a small business)- to perhaps speak with her.  In a small state, like Rhode Island, all the business you can get includes everyone, right?

Please know that I am married to a small business owner. The business is my husband’s passion: music. Often times he has had to turn people away from full-fledged returns in favor of store credit, but he always takes the time to discuss issues with his customers- and speaks to them personally. To be told, “no”, was a lot to take, especially because the woman I had spoken to was so sharp with me and didn’t seem to hear what I was saying. I love the carrier, but medically I can’t use it. Isn’t the human condition a benefit here? The rules can be changed. Exceptions can be made. But, you have to listen.

And not I have to make the request that  no one give Addie gifts from small shops… clearly they cannot bend to be helpful to a new mom who is in apparent distress. As people serving people, looking up to see your customers, instead of down at your phone/keyboard/notepad, would go a long way. Sometimes you just want to know you were heard before a decision is passed down.

At the end of this debacle, I posted the carrier on line for a fraction of the price… and my big sister saved the day. A new mommy herself, she posted on Facebook and asked around, finding a buyer!

Sadly, however, this was just one of the few items that I was told “no” to on behalf of Addie.

Which brings me to Babies R’ Us in Warwick, RI.  I originally loved the idea of registering at only small shops, but knew we would need far reaching locations due to my family being all over the east coast (and some on the west, too!)- so BRU it was! I’ve been so happy with their assistance in returns and exchanges since the baby showers, and for this alone I was so grateful.

The Baby Einstein Bouncer was awesome! I remember seeing it and wanting it immediately; colors, lights, music and a ton of tactile activities. I was sure Addie would love it as much as I would.  Alas, this was not to be so.  Not a big deal to return, right? Wrong!!!

The box that the bouncer came in was cumbersome, so we took the inside boxes out of it and tossed the main packaging into recycling months ago; a small blessing that we never put it together. Driving to the store with Dave, he was convinced they would not take it back, while I was plotting my steps from pleading with the manager to writing corporate. We loaded our returns into a cart, including the pieces of the bouncer.

As we stood in line, I was already frustrated. Why do I have to explain things, why can’t “due to a medical condition” just be enough? I walked up to the counter with my cart full of stuff and explained, “I’d like to return some toys. I’m sorry I don’t have the main box for the bouncer, but it’s never been put together.” Michaela smiled at me and asked if we had been registered there. I felt the need to continue, “I really love the bouncer, but for medical reasons Addie can’t use it.” She glanced up from typing in my information and warmly smiled again. “No problem”, she said. While making small talk and commenting on how adorable Addie is and how she hopes she is OK, the sales associate scanned my registry info, found the bouncer, scanned the rest of my stuff, swiped a merchandise return card, handed it and the receipt to me and wished me a nice day.

I walked over to Dave, who was feeding Addie her favorite [and only food], Mommy Milk, and wanted to cry. I was so pent up, convinced that the world was against me. That, already, there were issues that would hinder Addie, but Babies R’ Us proved me wrong. A corporation caring about its customers, though I’m sure not always the case, has brought some light to the sadness I feel having to return toys that are not good for our beautiful little girl.

We got this beautiful elephant, a mirror, finger puppets, 2 books and an impression kit for Addie’s hands and feet with the credit. I think these will be great to help Addie’s development for touch and vision. I’m so excited to play with her new toys and help her develop at her own pace in a fun way!

Knowing that I shouldn’t give up on the world lending a hand is a good feeling- especially because this is just the beginning of a long road.

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Community

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

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

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

And so, I wait.

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

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

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

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

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

And I am at ease.

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

But aren’t we all?

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