Tag Archives: achondroplastic

Every Six Months…

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

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

A new lesson in life.

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

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

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

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

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

#aisforadelaide #babyyoga

#aisforadelaide #yoga #downwardfacingdog

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

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

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

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

#aisforadelaide #siblingday2014

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Filed under Achondroplasia

Adelaide has achondroplasia

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

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

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

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

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

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

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

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

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

Photo: Dimery Photography

Photo: Dimery Photography

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

Adelaide has Achondroplasia.

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

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

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

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

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

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Filed under Achondroplasia

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!

*  *  *

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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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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Marvelous Monday

Helloooo Monday!!

I’m sure it goes without saying, but I want to shout it from the mountain tops: I am SO thankful for my kids. Kids? Yep… these two light up my life with their silly acts and best hugs and snuggles. You know Addie, but who you may not know is our first baby, Carter. He is a Catahoula rescue from Tennessee, where he was due to be euthanized at 6 weeks old! He came to us when he was 9 weeks and we’ve been in love with all 70 pounds of him since the day we saw him online. Don’t forget to tell those around you how much you love them, too… maybe the tickle monster or a Kong of peanut butter would say it best!

AddieandDaddyandglasses  mamaandcarter

*  *  *

My dwarfism tidbit of the week is actually something that came up in a forum last night, though there isn’t much printed information about it… the tongue! A lot of kids with achondroplasia have tongues that stick out- eventually (for most kids) this changes, but in the toddler years, it can be seen daily. Addie doesn’t have this particular trait, but she does have focus tongue, which leads me to this: Your tongue and stomach muscles are connected! Did you know that? When you’re working out and your tongue sticks out, it’s a related reaction. In children with dwarfism there are many other reasons, including a smaller mouth, crowding, a lower palate, and most common to achon children, low muscle tone known as  hypotonia. All the ways one muscle or reaction effects another so far away (in relation to each other) is pretty cool… but can certainly be scary, especially if other children are developing differently at every turn. As long as the child is cleared by their geneticist, or specialist, there is no need to worry about the tongue sticking out!

*  *  *

And my random isn’t random at all… it’s amazing, fantastic, wonderful news. It’s a brag. I cried after watching her progress just over the weekend: Addie is walking! Not cruising or walking and falling… she’s upright! She can change directions, wobble and regain her balance, pick something up while walking, get up while holding an object and has learned to climb down off our bed (which we just lowered for that precise reason!)…

ADDIE IS WALKING!!!!!

Ok… That was my celebration. My random act from some higher power who gave Addie all the tools in life she needs to succeed: determination. THIS is the milestone chart for achondroplastic children… and my sweet lady is blowing it out of the water. I prepared myself for another year of a less mobile baby- bending over, back breaking and, to be honest, a little heart wrenching to see everyone around me watch their children run while Addie just crawled. But no. That’s not for us. Standing at least 4 inches shorter than lots of her friends, Addie is right there next to them, holding her own. Somehow we went from army crawling and holding onto walls to walking, and walking fast (!), in about 3 weeks. Congratulations to my baby girl for standing on her own and taking a few steps (8/23/13) to spending her first full day walking (9/14/13)! I don’t know how we were randomly picked out of ~40,000 to be the one family for Addie, but her sheer power of self persuasion is teaching me to reach farther, push harder and achieve my goals, because there is no reason, no piece of paper or medical study or person of any knowledge, that can tell me I can’t.

walkingbaby

Have a wonderful week, Reader!
Love,

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Filed under Marvelous Monday, Milestones

Marvelous Monday

Whew… Monday already, and I am still lacking motivation in everything except running. Which is awesome and leads me into what I am thankful for this week.

You know those moments in life that you cannot help but smile ear-to-ear? I had that Saturday night when Dave was watching me brush my teeth in my underwear (it’s really hot out!). Out of nowhere he said, “You don’t look like you had a baby. Really. Look at the flat belly.”

Belly

I’ve never been skinny, but I guess I got back into shape. What really struck me was to have someone verbally appreciate my body without restraint or being over-sexual. I’m so thankful to have a husband who remembers to tell me I still got it… even if it’s not what it used to be. It is too infrequent that women are reminded to look at our bodies and love them. Enjoy a new curve, or an old one you’ve bid farewell to. Walk around in your underwear just because. Be thankful YOU love your body… not just your partner (although that is a pretty sweet perk). I’m thankful for your readership… no matter your shape or size!

This week let me point you in the direction of STATS! Addie is growing, slowly but surely, wracking up an inch and a half and two pounds since her last visit! Children with dwarfism  have their own milestones and growth charts… if you’re looking for more information, please look HERE for the  most up-to-date achondroplastic charts.

Finally… a random which I am SO excited about: As if I needed another project in life, I’ve talked my father-in-law into doing a weekly blog I’ve called Carpenter in the Kitchen. Joe, a former carpenter, is a great cook- he likes to keep it simple, but jazzy. Know any guys like that? They’re perfect for Sunday dinners! Best part, he cooks fairly light- so us running mamas can enjoy his fare, too. As football season is nearing, we will actually have posts going up- pics, recipes, vlogs… lots of good stuff to eat and laugh while doing so- a 5’4″ Cowboys fan with a greying ponytail and a 5’8″ Eagles fan with tattoos… This could get out of hand quickly, as we will initially be football-centric. With Joe a Cowboys fan (boo!) and me an Eagles fan (yay!), we are going to try and do one local food to our opposing teams each week. This is totally new and we are going to do our best… here goes teaching an old dog new tricks, and this one trick pony how to jump through a few hoops!

Happy Monday, Reader!!!!

xo

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How do you measure a year?

How do you measure a year?

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

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

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

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

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

Addie at Pool

to this:

Addie in Hospital

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

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

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

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

She is different.

There I said it.

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

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

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

Denial Process

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

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

Sleeping

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

That Smile

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

My Sweet Family

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

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

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

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

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

 

How do you measure a year?

 

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Marvelous Monday

For the first official Marvelous Monday post, let’s jump right in!

Educate

First up: sitting up!
If you had asked me last week if Addie could hold herself up, the answer would have been NO! But now:

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IMAG2012That’s a whole ‘lotta sitting! Her back is super straight, and I love giving her the opportunity to see the world from another vantage point. She does not pull herself into the position, so we don’t practice this too often.

Placing a child with dwarfism (specifically one with spinal issues like kyphosis) into the seated position often leads to “tripod sitting”. While this position is fine for most children, it is not for an achondroplastic because their vertebrae crunch in on themselves on the inner part of the spine. This leads to chipping away the bone, and can case severe back issues. Addie tries so hard to not fall forward, that she often falls out backwards (hence the pillow behind her).

Children with dwarfism can expect to sit up, on their own between the ages of 11 to 14 months. While Addie is only 8 1/2 months, she is not doing this on her own! We do not use seats (Bumbo, Mamas&Papas) that assist with propping because they allow for lower spine curvature, however, on Friday (1/11/13), I went to place Addie on her back, and she would not un-fold herself. I was bending over to put her down and I let her go to readjust my positioning, and she sat. Just like that. She wasn’t leaning on the sides, or against a toy. She was just sitting there! When she does fall back, she cannot hold her head up from falling like I’ve seen lots of other children do, so I do not leave her like this, but it’s been wonderful to see her sitting up for 30 seconds (or more!) at a time and laughing and smiling the whole time. Knowing that she is doing something new is not just exciting for us as parents, but for Addie, too!

While Addie’s milestones may be well behind those of average height (AH) children, her mental and emotional skills are not delayed. She mimics us and says funny things like “dada”, when she sees a man with a beard, she loves to brush her teeth, and when the music shuts off on her Baby Einstein player, she knows to slam her hand into it until it starts again (yes, she does this in the middle of the night when she wakes up). I have a baby who puts herself back to sleep with music. I feel like I might be WINNING… sorry Charlie.

Many times people have wondered when their child will sit, and being that Addie is my first, the wait is so hard. Watching other children sit up, crawl and walk, while my beautiful girl tries to squirm on her tummy or rolls into a toy isn’t always easy, but when she curls up into me, soft and warm, I know that when she is sitting up, walking and running, I will wish for these fleeting moments and never get them back.

I send you all my love POLP. It’s never easy to be a parent. Our babies are different. We don’t want to point it out, and as they mature they will do anything any other child does, but this early in the game, it can be daunting to watch other children do what our baby cannot. I still feel those things, knowing that Addie is “behind” her peers. As first time parents, all the things we prepared for are different. If you’ve already had a baby who is AH you’re starting all over again; learning new ways to parent and raising a child completely different from your others. And to all my friends out there who have no idea about dwarfism… be patient with me. I will move on and Addie will, too, but some days I just feel very alone. Thanks for sticking by me.

Thankful For

While I’m cooking dinner, a task we begin at 6:15 every evening after Addie eats, I put the babe in her exersaucer. Previously, she stayed in her highchair and demanded puffs. Shrieks and shrill cries told me none of my offerings of mixing bowls, wooden spoons or spinning toys would appease her desires. She wanted puffs.  While I don’t think any baby needs a diet, I don’t think my baby needs to eat puffs because she is bored. And so, most nights, dinner would be started, but not completed by the time Dave got home. There was simply no way to make food and stop the tears at the same time.

Addie wakes up from her 4:30-6pm nap, eats and then wants to play. She gets some puffs so I can begin dinner, plays with spoons and makes herself into a little drummer (just like mommy) and then, at the time when my hands are covered in raw chicken or beef, she lets out the first cry. I usually get the food prepped and my hands clean before WWIII starts, at which time I pick her up and put her in her new exersaucer.

Addie Playing

And so… what am I thankful for this week? Not the exersaucer, but for the best friend who knew what I needed before I did… even if that need is an exersaucer. I am thankful for my best friend. Sometimes you meet your soul mate on the playground of kindergarten. She’s the little girl who is similar to you, with the opposite hair color, but the same shoes. Or maybe she is in your dance class, or you swim together at the Y.

Me? I met mine at a new mom’s group. I won’t get too involved, but when I heard she was a transplant (from the south, HA!), her husband works too much, she had encountered similar loss in life, and had a high-risk pregnancy, it was like we were meant to be. We are not the same person on the outside. She is blond to my brunette. I have blue eyes to her brown. My muscular, though under-toned, body is covered in tattoos and a few piercings where hers is beautiful and lean with some freckles on her otherwise bare skin (when I was little I used my mom’s eyebrow pencil to give myself freckles- I love them!). I wear flats, she wears heels… and then we’re the same height. But, what we are the same in is our adoration of our baby girls (Addie and Hadley, known as Adley or Hadelaide), born just 4 days apart. Where I thought I wanted Addie to be born on April 21st to help heal the wounds of losing my father, I am glad she was born on the 17th (my lucky number). Hadley’s birthday gives me something to celebrate, but not a party to plan, which is something I don’t think I could handle. We are the same because we don’t fit in, but we do. We love red wine and champagne with cheese and guacamole. We love our SUVs and the men who provide for us, even if we never see them. We’ve known each other for about 8 months. Almost since the girls were born. There are no pictures of us in middle school laughing on the field hockey bus, but she didn’t play field hockey and I was never a cheerleader. High school dances? Nope, we didn’t know each other. College parties… I prefer those pictures never be released, anyway. But there are memories being made now. The loneliness of my pre-mom friends being too busy to ask me if I want to come out after the baby is asleep… it doesn’t hurt anymore. I have met someone who fills all the gaps and spaces. I love all of my friends, including (of course!) my Nick, who is my rock in Philadelphia. There are lots of ladies who fill my heart with love, and a few special men who have always protected me like a sister and fought with me like brothers. I am a blessed woman to have all of the love and support a person needs. Not from numbers, but from strength in the few I’ve let in, and who locked the door behind them.

I am thankful for all of my friends, but today I am specifically thankful for my best friend because she somehow always knows what I need. Yes, even if that need is an exersaucer so I can make some darn dinner!

Random?

Dinner is never random here. We eat around 7:30 8:00 9:15. Let it be known, we eat every night. I always have dinner ready… well, since 2013 began, and I wanted to share 3 super easy dinners you can get done in less than 15 minutes… as long as your children are amused. Can’t get them to calm down? Ask your friend for an exersaucer!
Quotes like: I can’t eat this fast enough and This has been an amazing month for dinners and Are you trying to out-do your dinner from last night are what keep me going. I wanted to have dinner ready when Dave got home as a personal resolution. No more asking him to come in the door and let me drop everything for him to take care of Addie and finish dinner while I come up to the office and Facebook. And so, I’ve rearranged my schedule to ensure we are home by 4pm everyday. Addie takes her nap 4:30-6 and then we head down to the kitchen to eat (her last meal of solids for the day) and make dinner. I make sure that I am prepared for what we need ahead of time, placing all the dry, canned and jarred goods out on the counter and putting all the refrigerated goods together on the bottom shelf in the fridge- ready for grabbing. I make sure that any recipe is loaded into my phone and the oven is pre-heating while Addie eats. And so, I’ve had dinner ready every night- including wine poured!

A few faves, each serves 2-3 adults… or 2 adults, 2 kids. Dave and I eat dinner and he takes leftovers for work!

Chicken Cesar Salad
I was never a fan of prepackaged salad kits, until they were on sale and I decided to get a few.

Cesar Salad Kit
Amazing.
Add sliced black olives, 3 minutes.
Grill chicken on the Foreman, 6 minutes.
Slice chicken, throw onto salad kit in bowl.
Call yourself a chef.
Pour wine and pat yourself on the back.

Garlic Kale with Sausage and Mushrooms
Take the casing off three sweet Italian sausages, cut into 1/2 inch pieces, throw into pan with oil until brown. No casing is crucial… I think it tastes SO much better.
Meanwhile, wash and dry one bunch of kale. Cut leaves off stem. Put into wok with 1T olive oil.  Add 8oz. sliced mushrooms. Cook on medium heat.
Dice fresh garlic… as much or as little as you want. I LOVE garlic. And toss with kale after 5 minutes.
Add salt to taste. Cook until leaves are tender but still crisp and bright green, lower heat and add sausage. Mix. Let sit for 1-2 minutes.
EAT!
You can use whatever meat you want… but YUM!!!!

Lastly… I got some pork tenderloin, already seasoned.
Follow the instructions on the package, but plan on about 40 minutes of bake time (I LOVE long cook times… set and forget… without having to unload the crockpot).
Make some couscous, which is super fast and simple, and season with S&P, paprika and turmeric for some smoky flavor and color.
Steam up veggies (I used broccoli) and dinner!
Pork is super easy because you let it rest for 5-10 minutes, then slice the whole tenderloin and divide it for dinner and lunch the next day. Couscous and steaming veggies are super fast, and great sides.

Happy eating… and HAPPY MONDAY… to all!

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Does she have what it takes to be…

The next top model?

I think so.
It brought me to the research of if others thought so, too.

In August I posted on Carter’s wall on Facebook:

Dear Carter’s,
My name is Adelaide (A is for Adelaide). I am an achondroplastic dwarf. My mom has been struggling to find me clothes that fit and trying to sell the clothes that are too big for me so she can get me new Fall clothes. My dad works really hard, so mom spends sparingly, but says I can’t wear summer clothes in November!
This is my favorite outfit: from your store, INCLUDING my hair clip (except my shoes).
I am 4 1/2 months and I wear newborn clothes. I wasn’t diagnosed until I was 9 1/2 weeks and my mom and dad are average height adults, so my mom had taken all of the tags off my stuff and washed most of it: she never thought I would be a dwarf- but she and dad love me no matter what!
The employees (especially Deb) at your Cranston, RI store have been wonderful to me, and mom can’t wait to go back and buy me my Christmas dress! Thank you for offering newborn separates in the same styles that big kids can wear. I am growing smart and strong, but not so big, yet. It’s great that you have such awesome styles and great prices to help my mom outfit me (and save dad a few hours at the office).
Your biggest fan,
Adelaide (Chelley Martinka and David Martinka, too)

When it comes to being different, I know things aren’t easy, but I wanted to know if there was opportunity and I came across this wonderful article about people with Down Syndrome in the media. In it, Model Club Inc. is mentioned. I dug further into Model Club and came across an open call in our area. I brought Addie, explained that Addie is a little person, but no one cared. She’s really cute, said the woman checking us in.

And so, Addie is being represented. We have no jobs yet, but I know that Addie is beautiful, and I’m hoping that she can help promote awareness in the media about dwarfism. There are opportunities that have presented themselves to LPs in the past, and I hope that they do so for Addie, too (not just for her college fund); like this: Oz The Great and Powerful! In Trailer 2, we know Mikey… he is at 1:50, back left stack, in the middle in the blue vest!  Addie gives a special shout out to him (and his lovely girlfriend, Jess)!

Onto her career? Maybe… maybe this will just be some fun she and I have taking silly pictures. Either way, she’s my top model. Her first Baby Book Card:

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Achon Gerber Baby?

Adelaide is entered in the Gerber Generation Photo Search! She is adorable, and her little smile fills up my heart! I hope you feel the same way!

PLEASE CLICK TO VOTE FOR HER!!!!

First achondroplastic baby to be a Gerber baby?! I think YES!!!! Vote for Adelaide!!!!!!!!!!!

You and your friends can vote once a day every day from September 4th for Adelaide to win a $10,000 Gerber Life College Plan!

Thank you, in advance for your support!

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Filed under Achondroplasia, Community, Milestones