Tag Archives: LPA

Keep Pushing

I was unable to find anyone who recorded (or even took a picture!) of the LPA Speakers’ Night, but I wanted to share my piece with you. I plan on recording me speaking it, but wanted to share it with you (written) in the meantime. So, without further stalling, here is my LPA Speakers’ Night Piece entitled: Keep Pushing.

#lpaSD2014 #LPA Speakers Night

As I embark upon the birth of my second child, I find the title of my piece ironic.

Keep pushing.

While that’s not my birthing mantra- that one is just breathe- Keep pushing is my mission in life.

Letting ourselves be defined by anything, even things that are so apparent, like our gender, sexual preference, race or disability is no way to live. It’s no way I will let myself or my children live, so why do other people expect me to allow such behaviors from them?

The answer is simple. The answer points a finger. The answer stings. The answer is me.

People treat others as they are allowed to. Sad? Pathetic? Lame? You bet. But it’s the truth. We love to take advantage of life- be lazy where we can be. We often, as humans, forget the implications of our language.

We let people call us homo, fat, crazy, midget, whore. Because as a culture stopping these things is too “politically correct”. We fear that we are being “too sensitive”, we aren’t raising tough kids, or we ourselves do not have thick skin.

“Good luck this time!”
“Good for you- trying again.”
“Sucks you didn’t know before she was born.”
“Is there anything they can do for her when she’s older to make her taller?”

Fellow humans have said these things to me. Why does the world view dwarfism as something to be cured, rather than embraced as a difference?

We don’t want to question what others say. We give up our right to know about ourselves when we don’t ask the hard questions.

“I don’t know.”
“We will learn together.”
“Let’s come back to that.”
“This is my first one.”

Doctors have said these things to me. Why is the education about dwarfism so slim that many medical professionals fear the diagnosis of dwarfism- offering patients little education and less options.

My mantra, Keep pushing. For respect, for knowledge.

Do you see it yet? Do you feel the need to push?

There is change that can be made. There is change that needs to be made. There are generations coming up behind you and me, behind the children being born today and the children following them. There are millions of people yet to be born, and thousands will have a form of dwarfism.

But they will not be dwarfs.

They will be painters and doctors. They will be writers and scientists. They will be political leaders and dreamers and veterinarians. Those born with a form of dwarfism will love and be loved. They will change lives and shape the world for future generations. The way we need to now.

There is a need to define ourselves by what we want as a community and let the masses, not the few, lead the way. Television shows that pigeonhole this community, media misconceptions, movies and comedians are things of the past when we push- and keep pushing- to be defined not as little people, but as people. Height doesn’t make someone smart, or happy, or better than. Average height just makes you average.

Be spectacular regardless. Keep pushing.

When a doctor tells me they do not know, I ask, “how will you find the answer?” When I am given news about a health concern and then that same medical professional attempts to leave the room, I ask for further explanation. I ask what our course of action is. I ask what their medical opinion and experience are. What is the timeline. How do we proceed? I push to know more. I push to make them answer. To make them accountable for their diagnosis. I refuse to let Google do my doctoring. I refuse to leave not knowing.

Too many parents email me with the same story. It goes like this: The doctors told me my baby would be a dwarf. They gave me a packet of papers and told me to make appointments for these things. They told me to be prepared, but not for what.

More often than not, I offer my telephone number. I spend hours each week calming mothers-to-be and new parents. Not giving medical advice, but offering an ear and listening to questions that are left unanswered. Unanswered concerns from a doctor who left their patients with a handout and maybe a few people to call.

This is not OK. This is not how patients should be treated. Dwarfism is not unknown. Specialists exist!

In my hours on the phone I’ve looked up local hospitals with clinics, referred many to our own team in Delaware, and always given out the LPA’s website. Hours spent giving the same basic information that needs to be readily available to all patients with a diagnosis of dwarfism. Support, love and most importantly, knowledge.

Keep pushing.

Keep pushing so that when someone sees a person of short stature they smile, the same smile they offer any other human on the street. Why? Because a person of short stature is any other human.

Keep pushing to make changes, because if there is such an uprising about a professional football team name change, then there should be a change across the nation of high school sports teams named The Midgets. Because other people do not decide what offends you. Because other people don’t control our emotions. Because being sensitive, caring, respectful people is what defines a civilized culture. That is what humanity means. Because even doctors need to learn something new every day. Because bedside manner isn’t dead (and neither is chivalry, if you were wondering).

There isn’t a facet of our culture that doesn’t need advocacy from our community, so be that voice. Never stop pushing because it doesn’t bother you anymore, or because you think one person can’t make a difference. One voice. One community. One change at a time.

Keep pushing because letting ourselves be defined by anything, even things that are so apparent, like our gender, sexual preference, race or disability is no way to live. It’s no way I will let myself or my children live, and I won’t being defined by anyone but myself.

 

19 Comments

Filed under Achondroplasia, Community, Educate/Adovocate/Make Change

Marvelous Monday

So much to say about what’s been going on, but I keep reflecting on our wonderful experience in California.

If you followed my social media pages, you may have noticed #lpaSD2014 making it’s way around with pictures, quotes, and events… all leading to the LPA National Conference in San Diego. It was amazing.

It is also something that we could not have participated in without the help and support of our parents and my aunt and uncle. Both my parents and Dave’s helped us get there (via flyer miles, rewards, food, and accommodations). I am also extremely grateful for my dearest, who works his tail off at work and then each weekend doing repairs to save up for the cost of eating away from home (yes, a BLT in San Diego is $10!). But it is more than the money. It’s the understanding. My mother-in-law was initially going to come with us (she will be attending workshops with us in Boston in 2017!), but decided that it was just too much for her… however, she still supported us going, which means the world to our family. San Diego is an awesome vacation spot, but the conference, the LPA organization and the knowledge and friendships we gain each year are invaluable to us.

#Aisforadelaide #lpaSD2014 #family #friends #dwarfism

Addie was blessed this year with a gift from a family who lost their child to a rare(r) form of dwarfism with a Lifetime Membership to Little People of America, and we could not be more thankful. Knowing  that Addie will always have access to the best advocacy, community and medical advice, even after Dave and I are not here to guide her, eases my heart. There are so many lesser known facets to the LPA organization that I hope she explores- including scholarships and a deep-rooted community- that having this membership offers her access to all this and so much more- forever! #aisforadelaide #lpaSD2014 #LPANationalConference #SanDiego

With that, the opportunity to go to as many regional (local) and national events as we can gives us all opportunity to learn, play, educate and be educated. Last year, I was a part of a panel that focused on social media and how we present ourselves as a community, and this year I spoke about why I keep pushing (advocating) for more education and awareness. Dave got to learn about different home adaptations and how he can make our house more comfortable for Addie without making it difficult for us. Even the grandparents got to go to some workshops and learn a bit more about what it’s like to grow up as someone with dwarfism, the things they can help Addie with, and just take part in the community.

#aisforadelaide #lpaSD2014 #expo #travel #sandiego

All-in-all… this was an amazing experience. Made that much better by our trip a few hours north to see my Aunt Donna and Uncle Ted. While I am forever grateful to the LPA and being able to experience national events, being able to see my Uncle Ted meant more to me than I can express. My Mom did not find her brother until she was in her 20′s. Adopted at birth, she was able to reconnect years later with a lot of research… and I am so glad she did. My Uncle is amazing- traveling to see us a lot in my youth- and coming to stay with us for much longer than he anticipated, when my Dad passed. We often joke in my family that I was a wild child, but that didn’t really happen until my Dad died. My Uncle saw firsthand how out of control I became and how quickly I down-spiraled. But still, he stayed. Day after day he supported my Mom and did everything he could to help with the daily running of the house, and the big things that my Dad had been too sick to do in his last months of life. Going out to see him, hug him, talk to him and see the spark in his eye was more than I could ask for.

#aisforadelaide #lpasd2014 #family #vacation #travel

He’s sick. I hate that. I hate seeing a man who has rocked the world, serving our country, playing a major role in aerospace development, advancing the programs that offer guide and service dogs to those who need, and most of all being an amazing family man- he’s diminishing in body… but never spirit. I was afraid he would be fragile and was instead surprised to see him, stout as ever, never batting an eye when he needed oxygen or apologizing for needing a break. Quite simply, as Ted has always been, he just is. Maybe that’s where I get my no apologies life-view from… I am who I am, be damned if it upsets you or makes you uncomfortable. And my Aunt Donna, his rock, she’s kind of amazing, too. Her love, support and drive are inspiring. A teacher for years, she set Addie up with all the fun stuff while accepting oxygen deliveries, getting towels for Addie and I to swim, her beaming smile never fading.

#aisforadelaide #family #LPAsd2014 #sandiego #losangeles #travel

There are some days that are really hard. For everyone. I have a family who has taught me, and continues to do so, that there are way more rainbows than rain if we look for them. I am thankful that we got to Cali this summer… for the sun, sand, friendships, education, family.

Have you done a big summer vacation this year? What was your favorite part?

Happy Marvelous Monday, Reader! I hope you have a beautiful week!

31 Comments

Filed under Community, Marvelous Monday

Marvelous Monday

And so… we are back. Many times I spent my Marvelous Mondays writing about what I am thankful for as friends or my surroundings, but today, I want to be thankful for opportunity. We don’t go on date nights, or celebrate with fancy dinners or outings, most of the time the idea of vacation seems intimidating and daunting for the sheer cost factor, but we are never short on opportunity.

Much thanks to our parents, who help us do the big things in life. We’d love to cruise the Bahamas, take a trip to Disney, see the Eiffel Tower… but more than that, we want to learn and support this amazing community around us- the reason I even began this blog… we want to be active members of the LPA as fully as we can be!

Last week, we took full advantage of our membership and joined hundreds of others in San Diego.

#aisforadelaide #marvelousmonday #lpaSD2014

I spent hours in workshops, gatherings, meetings and group events… to learn, to think, to take notes, to listen, to share, to dream, to wonder, to play! Addie participated in her first fashion show! I met SO many wonderful people I’d only ever spoken to online. Dave got to SIT DOWN! I spoke… in front of way more of a crowd than I was expecting, and though it was not recorded (to my knowledge), I will share the piece with you soon. We made friends family.

So, what is there to not be thankful for in life? I’m not thankful that Addie will have to undergo another MRI for more imaging. I’m not thankful that we still don’t know why she’s blacking out. I’m not thankful that there are so many questions and so few answers… in general. But who is counting? What this means is that there is more to see, more to know and more to learn. Advocating for our community, for our family and for Addie herself is never done. So let’s start this week in thanks… and get ready to work hard once again!

Happy Marvelous Monday, Reader!

love,

48 Comments

Filed under Community, Marvelous Monday

Marvelous Monday

Oh. Em. Geeeee!!!!!

There’s so much to say and so little time to type! I just want to let everyone know- we made it safely to the LPA National Conference- and I survived another public speaking engagement! We miss our sweet Carter Jay, but he’s having fun with his grandparents and ruling the roost.

If you are here at the conference, please let me know! I would love to meet as many new people as possible! Just leave a comment, or email me through the Contact tab! I will be posting way less this week and appreciate your understanding!

Lots of love and a beautiful Monday to you, Reader!

Leave a Comment

Filed under Marvelous Monday

Happy Fourth!

We are celebrating our wonderful country by flying the friendly skies! We are heading to the LPA National Conference, as well as a visit to my Uncle Ted (Camille Thea’s honoring him with her middle name), and we are so excited.

But before we go, this beautiful American girl wanted to wish you and your family a Happy (and safe) 4th of July!!

#4thofjuly #aisforadelaide

 

Leave a Comment

Filed under Parenting/Family/Lifestyle

LPA Conference Tips!

We are off to our second conference next week and SO excited- but… there are also some lessons we learned from last year’s adventure. Read on for some conference tips that are sure to help make your whirlwind week go smooth!

1. Send all information.
Many times when you meet a new person, you want to be able to reconnect with them, so when you text your number to someone, send your full name AND number in the body of the text.
Sometimes it all gets lost in translation and seeing all of the info on the screen can really help… and on smart phones, the number is highlighted! Just click and you’re calling! How simple!

#aisforadelaide #textinfo #LPASD2014

2. One group page.
Facebook pages are so easy to make that sometimes multiples come about for conferences and then confusion about threads… it’s a mess. One page, with multiple events are a perfect solution because they give a conscious timeline, as well as options for what people want to join, see, and feed into!

3. Car share/car pool/public transportation.
Ideas like parking off-site to save money, renting a car only for necessary days, getting familiar with the public transportation in your destination city, and even splitting car rental with another family are all ways you can save time and money. Getting creative, as well as informed, gives you more options- for instance, most conferences take place in walk-friendly cities, where hailing a cab may be an easier feat than finding parking- plus, many hotels offer group shuttle service from the local airport for less than a cab! Before you click “add a car” to your reservation, be sure to look into other options.
*Biggest tip this year: park at the convention center a few blocks off-site from the hotel!

4. Make a budget, including some funds for an emergency (ripped luggage, forgotten bathing suit, ER copay, etc.), and make a plan to stay in it.
For us, that means clearly outlining what we do ahead of time (admissions to parks, airline fees, parking, gas, and meals) and then sticking to it. I wish there was some extra in case there’s something really fun, but that’s not in the cards- remembering that if you’re on a strict budget may cost you “trading” one thing for another is crucial. Enjoying a vacation that leaves you further in debt is only a vacation that will leave a bitter taste in your mouth. Remember to include little things, like internet, which is free in our hotel lobby, but not in the rooms- this means I have to work from the lobby or pay, or tether to my phone- so I have to have enough data. Both Dave and I need to work (there’s no vacation for a freelancer), so being sure we’ve covered all of our bases as far as expenses is important. Enjoy your trip by not over-extending yourself financially… then the memories are of joy and not stress!

5. Make a list!
I LOVE lists… I’ve made one of what we pack, as well as names and numbers of friends we want to connect with ahead of time! Having that on paper means I don’t have to dig through my phone to find that information later and no one gets left out.

#aisforadelaide #LPASD2014 #makealist Tips

6. Grocery shop.
The hotels booked for conferences KNOW how to have a conference-number of people, and (most) have refrigerators in the room, as well as space on desks and tables for dry goods. To save money (breakfast buffets can be upwards of $20 per person at conference hotels), we buy bagels and fruit for the mornings, as well as lunch meats, cheese, and bread for lunch- and always bring water bottles. I pack two water bottles per person to bring through the airport empty and have it filled at one of the airport bars. The same goes for traveling. We use these water bottles day in and day out filled with ice and water from the hotel. We plan special meals out, as well as budget for coffee each day, because we both love to support local coffee shops and need good java! Not dining out for every meal or having to buy a beverage whenever you need a drink can save you over $100 a day- #truestory.

7. Business cards.
These are a must for all professional conferences, but having business cards for whatever you do and whoever you are is something I live by. With your name, number, picture… whatever you want- make it fun and identifiable. For me, I use moo.com (not only awesome at all things print, but my most missed employer!) Their business cards are the most amazing quality (and hold up to the test of being at the bottom of the bag). Each pack comes with it’s own carrying case, and dividers so you can place other cards behind of your own, so they’re super easy to transport and they’re made right here in Rhode Island! Get your order in NOW and you can have them before the conference! Here are the ones that I ordered for the conference:

#LPASD2014 #businesscard #moo.com #printing #aisforadelaide

8. Prime.
Not Optimus, but Amazon (although I cannot wait for the new Transformers movie!). As a Prime member, you can have goods shipped to your hotel ahead of time, like diapers, that are especially bulky and disposable- and as an member you get free Prime shipping in about 2 days! Please be sure to call the hotel and make arrangements. (Anyone who cloth diapers- how do you travel and still CD?! Tips, welcome!!!!)

9. Calendar!
I go old school with this and use my planner so that I know what’s going on each day. I also print out a calendar of just the days we will be at the conference and fill it in with what’s going on that we want to do and then eliminate from there. From going to the most important medical workshops to making sure my own speaking event and Addie’s fashion show debut and the group photo are all accounted for, having everything written down means less stress of where to be and when, as well as overbooking your time- remember everyone needs some downtime, so don’t forget to head to the hotel pool, gym or just lay in bed for some time, too!

10. HAVE SOME FREAKING FUN!!!!!!!!!!!!!!!!!!

Who else will be in San Diego for the LPA National Conference?

46 Comments

Filed under Achondroplasia, Community

…and this is why. *trigger*

I have readers I’ve come to think of as family. Men and women who reach out for all sort of reasons. Some have concerns, others a missed diagnosis, some have lost a child or fear they will. And some are seeking forgiveness.

I will tell you, before you read on: this will make you uncomfortable. You might  feel anger. You may want to write and say horrible things. You  may feel sorrow, or pain, or maybe you even relate to the situation. Whatever you feel, please remember I am not just writing here- I am also moderating. While I allow attacks against myself, I will not allow them against other people who write or are featured here, nor against my child. What is ahead is hard to read. It is hard to comprehend as a parent. But I’ve never been where this woman has. Adelaide’s diagnosis came weeks after her birth. Weeks after I knew her sweet face, smelled her breath, nursed her and rocked her to sleep for endless hours.

For all of the moments I publish about general life, family, the going-ons of the Martinka family… that is to show you that even though we have a slew of appointments, tests and therapies- they do not rule our lives… I will also never stop educating and pushing to further public awareness of dwarfism. There are fatal forms, there are complications, but there are also beautiful days, moments that make me so full of happiness I feel I may explode, and most of all, times that are simply humbling to a parent.

Please remember that all decisions we make are done with the most care for our children, and made with all of the information we have at the time. I do not judge a parent for doing their best for their child. I only pass judgment on myself, and hope that my readers will as well. Understanding the plight of a parent in distress is something that we can only speculate reaction to. This is raw emotion.

This reader reached out to me from Greece. At 25 weeks, at the advisement of her doctor, OBGYN and multiple pediatricians, she terminated her pregnancy due to an in utero diagnosis of achondroplasia. She asked me to share this letter (sic) for other parents who may think this is their only option.*

 A month ago I terminated my pregnancy because my baby was diagnosed with achondroplasia. And now, I regret it every second of my miserable day. The reason I write this letter  is to inform women who have all these questions like I had and no time to decide what is the right thing to do. In my case, everything happened so quickly. I don’t really know what happens in your country. Where I am, every doctor and medical expert keep telling me that termination was the right thing to do.
What if it is not? And I think, as a mother that it was not! So keep in mind some things and then decide. You are pregnant to a baby who will be a smart, intelligent human being. Yes it will be small and perhaps will have some health problems that you will have to handle but who can guarantee that this won’t happen to your other absolutely normal babies? You are the mother! You will have the strength and the ability to keep this baby healthy and happy and if you still can’t decide just think of me. I am a miserable person who dies every day. I hate myself just because I was badly informed and weak to decide what I thought it would be the hard road! Believe me… this is the hard road… the road I chose. Just remember that every baby has the right to live. I should have known better…

While this mother is still very hard on herself and feels she should be punished, I left her with this thought, and I leave it with you too, Reader:

#aisforadelaide #educate #advocate #quotes #inspire #nojudgements


* This letter is not written by the blog owner and does not reflect nor represent the thoughts of Chelley Martinka.

15 Comments

Filed under Achondroplasia, Community, Educate/Adovocate/Make Change, In Other's Words

Marvelous Monday

Welcome to Monday!!! I hope everyone had a beautiful weekend- especially my running family who is going full speed ahead with the Broad Street Run in Philly and Cox Half and Full Marathon! I’m so proud of you all!!!!

So, while my running legs are sidelined during pregnancy, my spirit is not! This week I am so thankful for the amazing community of women who surround me- and blessed that I can give back, too. During a fundraiser on Saturday, there was a gathering of women (and some men) I know from all different walks of motherhood- classes I’ve taken, group play dates, story times, and, most importantly, through Rhode Island New Moms Connection. Through RI New Moms I’ve been able to discuss pregnancy and new motherhood in all its glory- from date nights to late nights to never-ending nights and everything in between (yes, that includes the leaky boobs and mind numbing milestones that we all fret over). This support has been invaluable to me in the past 2 years. From the insight and open mindedness of the groups to the true friendship I’ve come to know, RI New Moms means more to me than words could express. I’m so glad that we got this together and hope we do it again next year to celebrate motherhood, support, community and love.

*  *  *

In the dwarfism community, I am proud to announce the newest Lifetime Member of LPA:

Adelaide Eileen

With love and kindness in the beautiful memory of Dio Loren Hutto Coglianese, our beautiful girl was gifted this membership. All the love and support people have said they feel from me… I want them to know I feel it back. Each conversation I have, whether it is email, Facebook or phone- I love hearing from parents and helping us all navigate the waters together. The more we share our experiences- with each other, with our community, and publicly- the more everyone will know. Dwarfism isn’t ever going to be common, but it can certainly be less of a mystery and a more accepting and loving world for the future.

To those who have paved the way and those who have  gone before… our family strives to educate and learn all we can through the LPA and our own journey.

Sweet Dio, we will love you always.

*  *  *

Lastly, I want to share something a reader sent me information about… something I know many of my fellow mamas have battled with: Postpartum depression. There is an event called The Climb… read more about it below and please consider joining.

COTD2014flyer

2nd Annual Climb Out of the Darkness Includes Rhode Island’s John Chafee Nature Preserve Climb on June 21, 2014- Climb Out Is the World’s Largest Event Raising Awareness of Postpartum  Depression & Anxiety

On June 21, women across the globe and right here in Rhode Island will be participating in the 2nd annual Climb Out of the Darkness to raise awareness of perinatal mood and anxiety disorders like postpartum depression (PPD), anxiety, OCD and psychosis. Postpartum depression, which affects 1 in every 7 women, is the most common complication of childbirth.  On June 21st, the longest day of the year in the Northern Hemisphere, PPD survivors all over the world are organizing to climb or hike a local mountain or park to symbolize their collective rise out of the darkness and stigma of maternal mental illness as well as to raise funds to support Postpartum Progress, a non-profit organization in the U.S. founded to help support moms around the world.

Climb Out of the Darkness is now the world’s largest event raising awareness of maternal mental illness. As of today, there are more than 100 different Climbs that will take place throughout the US, Canada, England, Switzerland, Australia and New Zealand, including a local Climb at the John Chafee Nature Preserve (Rome Point) on June 21, 2014 at 4:00pm. Moms and others are all welcome to join the local Climb by registering HERE. Registration is free.

Postpartum Progress is a non-profit organization and online community of support resources for women experiencing postpartum depression and all other mental illnesses related to pregnancy and childbirth. Today, half a million women annually are accessing up-to-date information in plain language about perinatal mood and anxiety disorders on the Postpartum Progress BLOG and, more importantly, are able to hear from other moms who have recovered. The funds raised from this event will allow Postpartum Progress to create new educational materials to be used by obstetricians, pediatricians and others, as well as new materials to help educate the media on the public health impact of postpartum depression and related illnesses on mothers and children.

For questions about Climb Out of the Darkness, visit HERE or email local Climb leader Courtenay Petracca at CXS918@Gmail.com.

Have a beautiful week, Reader! And please… if you have anything to share, please contact me and let me know! I want to support our community- no matter how far reaching.

xo

14 Comments

Filed under Marvelous Monday, Pregnancy/Birth

Marvelous Monday

I seriously cannot believe it’s Monday. I feel like we didn’t get a weekend- it was so jam-packed! …and while I am certainly stressed out and frazzled from the festivities, it’s the best feeling in the world.

I usually have a format… thankful dwarfism random that I follow, but this week, I have two thankful-s and no random. I know. I live on the wild side- even breaking my own rules!

SO this week, I am thankful for all the medical wonders we have at hand. While it is not my story, I will say that my newest nephew, Beckett James, has arrived. As I would expect any child of my bestie would be, he has a bit of a flare for the dramatic and didn’t make his entry into this world easy. But he is here. My beautiful (by everything but blood) sister is not only doing well, but looking like a super model, and they are heading home today. I spent much of my weekend running between birthday celebrations and the hospital, and I feel so tired but so energized at the same time. That feeling of holding new life. The one-on-one time of a new baby, in the quiet of the night (sure, I stayed a bit beyond visiting hours), talking to my friend. About our parents, about the future, about our families, and plans and and and. It was like a sleep over, with cooing and sweet baby breath. I took photos as my nephew took his first bath, and we laughed at re-learning to change a diaper (we both have girls for our first babes). This experience made me wish I lived closer to my big sister in Florida, wishing I could have been by her side, and also brought about such a deep love for this woman who mustered all of her love and strength to bring sweet Beckett into the world. I’m so excited for the next chapter!

And what else could I be thankful  for this week, if not the amazing women who rallied behind me almost 2 years ago through Rhode Island New Moms Connection? These women have given me so much love and support, and having them surround us to celebrate Addie’s second birthday (a little early) meant so much to us. We played, ate delicious pizza and mini cupcakes, and then played a bit more… and I watched as each child made connections to the others- all of whom they have known for their entire lives. Many of the kids ran up to other parents, giving hugs and kisses, because we all know each other. We all have a bond with each other- those first few weeks of motherhood that we spent together sitting on a floor with our new babies, trying to make sense of what we were doing right, and what we needed to change. Having those same women beside me… that’s what keeps me going. But there’s more. There are the moms I know from other personal experiences… like a friendship kindled over a wedding gown, flourishing through a love of hockey and sharing a first pregnancy! And friends from our cherished LPA community who made the hike to play, and pick up good conversation like we’d just spoken last week. A comfort and bond brought to us by a shared difference, making us  common- but a friendship we grow together watching our kids enjoy Life.

#aisforadelaide #birthdayparty #hangingaround

Just hanging around (BY HERSELF!!!!!). She’s come a long way in 2 years!

I have been blessed by my experiences, no matter how frazzling they may be, because they have brought me right here. To you. What will happen this week that will test you, but also teach you, nourish you and grow you? I hope  you find those moments and smile.

*  *  *

And what’s new in the dwarfism community this week? The LPA National Conference registration opened on the first!!! I would love to know what families will be there this year! We are so excited to meet new people, explore California and learn as much as we can at the workshops! Stay tuned to the blog for my conference tips later this month!

Lots of love to you this beautiful Spring week!
xo,

10 Comments

Filed under Marvelous Monday

Adelaide has achondroplasia

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

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

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

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

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

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

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

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

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

Photo: Dimery Photography

Photo: Dimery Photography

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

Adelaide has Achondroplasia.

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

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

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

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

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

18 Comments

Filed under Achondroplasia