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Marvelous Monday

“How many times has this happened?” She asked me to repeat the number.

“Six. But only 4 times this year.” It was May. I knew our batting average was not good on this one.

“I’m going to refer you to a neurologist just to get her take. Other than that, she’s perfect- don’t you worry.

Marvelous Monday Decompression Surgery #aisforadelaide

I’d heard that before. When Addie was a newborn, I was told not to worry. A lot of kids have big heads, but they just wanted to be sure. I’d pushed to know more and at 9 1/2 weeks she was diagnosed with achondroplasia. And here we were. I’d pushed it. I’d asked if these blackouts were normal. She’d hit her head. No breathing, loss of color, completely limp, eyes rolling. 10 seconds with a lifeless body that would spring back the with force of the Devil inside, screaming. Followed by a headache, but other than that, back to herself. Six. Times.

“So she hits her head, cries, then stops and passes out? Sounds like she’s holding her breath.”

“No,” I responded. “She hits her head and nothing. I pick her up, trying to stop her fall from the beginning and nothing. She is lifeless. Then she comes to. She doesn’t cry first. She’s not holding her breath.”

“I see.” I see, too. Her hands furiously typing into the tiny laptops that the hospital just implemented in their paperless plan. She’s slamming at the keys, catching each word.

“Does she  ever get headaches?”

“Yes, but they’re weather related, my husband and I get them too. She has them a few times a month.”

“So you all get headaches at the same time?”

I paused. I felt hot and upset. “No, we don’t.” I’m wracking my brain. Dave and I get them on the same mornings, but not always Addie. Some days she just rolls around holding her head, and some nights she’s done this. “But it’s not all the time,” I’m sputtering. I want to take it back. How did I miss this?

We talked for a while longer. We did a neuro workup… a few times. Then, “I’d like to order an MRI to check it all out if that’s OK with you, mom.”

I left with papers and numbers and numbness. From the first hours I spent reading about achondroplasia, I feared decompression surgery. The recovery, pain, spinal cord, scarring. Everything about decompression scared me.

The MRI was done, and that was that. I was sure she was fine. My achon baby who walked at 16 months, spoke in full sentences, showed no significant apnea after age 1… she didn’t have classic signs of compression in her spine. She was fine.

She was fine.

I got a call the very next day from a doctor. The neurologist didn’t like the MRI, the neurosurgeon didn’t like the MRI. The story, the images. They were not great news. “Give her office a call. They will get you an appointment soon.” The appointment they  gave me was nearly immediate.

We discussed surgery, but nothing was in stone. I wasn’t convinced. I wanted more opinions and I would get them in San Diego from our specialists- but after the images and story, the answer was still clear as mud. Sure she falls a lot- all kids do. The blackouts may not be from compression. Her images are not indicative of surgery. Our doctors could go 50/50 on the surgery. I felt lost, but with an order for more images. They would tell us something. They must.

So last Wednesday we headed to Boston. Hungry and hot, Addie was ready for whatever was in store so long as she got to eat at some point. By 3pm they finally took her back- she was so loopy from the meds that she could hardly whimper when I handed her to the anesthesiologist, but I was still torn apart. We met back up in recovery, where Addie was still asleep. There was a laundry list of medications, and my usual lion woke up rather calm (read: drugged) from the anesthesia with her usual intubation-throat, looking for snuggles. At last, we were in the car and headed home.

By midnight we were mostly asleep, but not ready for the next day.

We walked into the APC building at Rhode Island Hospital- full of angst and armed with her MRI from the day before. We talked again. I mentioned her falls seemed to be from slow feet. Her waking in the night. Her headaches that still happen, but not often. We talked about how she hangs her hands funny sometimes, but she seems strong. There haven’t been any blackouts since April- she hasn’t gone backwards since then. Then there was a neuro workup.

At first, I thought it was my mind playing tricks, but as the specialist hit her heel, I saw her foot jerk. The fluid motion I was looking for, the common reaction of a reflex was replaced with this ugly movement. Taking her foot in her hands, she pressed up, let go and checked with the hammer again. “Clonus.” I said. She looked at me with sad eyes, knowing eyes. She recognized defeat in my voice. I had nothing left to fight about. Clonus is a sign of neurological hindrance (a continuous rhythmic reflex tremor initiated by the spinal cord below an area of spinal cord injury, set in motion by reflex testing). Catching it and treating the compression would be key in keeping Addie healthy. She could eventually stop walking and suffer from severe spinal damage without it. Decompression was the way to go. I had my answer.

All I could think was fucking clonus.

The neurosurgeon came in. More people checked. Sure enough. What wasn’t there just a few weeks ago was emerging. You can’t make this stuff up. I was near speechless.

I’d wanted an answer. I said I did, at least. I wanted a yes or no, and I was looking for reasons. There it was. Coming in little jerky, hesitant motions. I signed the paperwork for her surgery (which is happening tomorrow) and we headed to the lab.

“Her veins roll away,” I said. “They look closer to the surface than they are. Seriously- they will try to escape. They’re hard to get on her.”

“We do this a lot,” she said back with a polite smile. No one likes to be told how to do their job, but to be fair, I warned her and I know my child.

They pulled the needle out 3 times, and moved it around in her small arm a dozen times. “I got it,” a phlebotomist beamed. The second one who’d tried. I was annoyed, I was crying. I’d told Addie that this day wouldn’t hurt. We were just going to talk to the doctor. But here she was screaming from her back, “No mama. I want uppahs. Please pick me uppahs. You said. You said. It hurts.” I tried to take it on, “I’m so sorry, bug. I’m so sorry I lied.”

“YOU LIED.” She screamed. It came in a spit. A slap in my face. She was covered in snot, and red-faced. The fear spilling from the corners of her eyes. I started to heave into her neck. She suddenly stopped crying and began to stroke my face. “Don’t be sad, mama. It’s ok. You ok, mama.” I stopped my tears. This was her moment. She began to whimper again into my chest. They taped the gauze on and she practically leapt into my arms.

We got home and she fell right to sleep. She napped. I made lunch and I started some laundry. I called Dave to tell him everything and I answered all of his questions. I joked on the phone with my mom about attempting to get a urine sample from a 2 year old. I sat down to work. And then it hit me. I started to panic. I lost my breath. The scar. It would be on her neck forever. I didn’t want her to have that scar.

It’s not the aesthetic I worry about. It’s her sweet neck. Where I nuzzle. Where I pull her hair up and the most graceful neck appears, balancing her head gently upon her shoulders. Long and lean. Untouched. Beautiful. There will be a scar in that place, to constantly remind me: I couldn’t fix this. I’m her mother, and I could do nothing but hand her over to a team of specialists.

As I came out of my panic, I decided I needed to put time aside. This week, as much as I want to write because I love to write, I will not. Of course I have work to do, but who I am means more. And who I am is a mother, a wife. I need to support my family this week and appreciate all of your love and concern as we regroup and work through this. As Addie goes through decompression surgery, we too must decompress.

Spinal Decompression HOlding Hands #aisforadelaide

I’ve spent weeks in denial- maybe months. I ignored a lot of things, never mentioning them except to friends because it was just Addie being Addie. Headaches I kept calling seasonal. Falling that looks like she was dizzy. Holding her hands in a funny way some times- almost floppy. Blacking out entirely when she hits the back of her head. Holding her neck. Screaming at night (which is pretty new). Gasping for air in the night, but not related to apnea (still sort of a mystery and hoping surgery helps). And now, clonus. I’ve denied it all too long, and I could not be more thankful to the multiple doctors who pried and asked more questions, forcing these things out of me. Showing me that decompression, though scary, is truly the direction we’ve been headed. Her strength, both physical and mental is sure to be tested, but our girl will be strong. My warrior.

Addie will be at Hasbro Children’s Hospital from Tuesday to possibly Friday (hoping for discharge before the weekend and maybe earlier), and I will be by her side the whole time. Her recovery means more to us than anything now, and while I can’t wait to be back (I love to write and share!), I have to take this time for family.

Have a beautiful week, reader. Talk soon,

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

Marvelous Monday

You may have noticed an earlier publication today HERE!

It’s a sponsored post by Hallmark and helped our family in multiple ways: one, to celebrate our marriage and two, as a sponsored post, I was paid (or will be with in 30 days unless 30 days falls on a weekend or holiday in which case I’ll be paid the next business day). But that is why I am thankful. I am blessed to have the ability to work from home.

#bethankful #aisforadelaide

As I work each day, hours in the morning, as I can throughout the afternoon, and again until about 1am- I know that the peanuts that some weeks come easier than others, are worth all the linking, liking, posting, research, photos, editing, daily chore threads, shares and other work that I put in 7 days a week to have the option to be home with Addie. I am thankful for the husband that gives me the years it takes to cultivate a blog, and the hours of time at night he spends helping me with last edits, saving every ticket, pamphlet and menu we have, offering back rubs when the clock ticks well past 2am and I have just 5 more minutes of work.

I am thankful that each week, Reader, you come back to the blog and check out what’s happening in the Martinka world.

Here’s to another Marvelous Monday and all the days that follow- may we do what we love each day, even if we don’t love it every day.

xo

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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!

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Surgery Day!

So here we are again… Hasbro Children’s Hospital! Addie is headed in for her second set of tubes and an adenoidectomy.  I talked to 4 different doctors yesterday, and though I am pretty much not answering my phone if I see 401-444-#### (which indicates someone from Lifespan Hospital Network calling me), I am thankful that we have such an amazing team, willing to do all the research possible to keep Addie safe and healthy.

As many have read, we’re going through a lot of diagnosing and problem-solving for Addie’s blackout episodes, which included an MRI. Sadly, we did not have full follow through of the order, and Addie will need to undergo another round of imaging so we can get a better idea of what might be happening. For this, we will head up to Boston (in a few weeks)…. for today, we just want to get through the ENT battle.

#aisforadelaide #warriorgirl #HasbroChildrensHospital

After I wrote about needing sedation (Addie is intubated as her airways are constricted), and how incredibly apprehensive that makes me (pregnancy hormones don’t help), many people chimed in. I wish that I could say their words helped, but sometimes they hurt or scared me more. When I lost my father 16 years ago I remember a lot of other people missing “the mark” of things to say- there are a thousand articles about what to say to someone who is grieving, but what about parents and caretakers who are scared? I know that nothing said truly makes anyone feel better, but there are things that have made me feel a bit worse about what’s going on and I wanted to share them with you because many parents have told me they too feel the same way–>

1. Don’t worry.
See, the thing is… I’m WAY past that.
2. It’s not a big surgery.
If my child is in surgery, it’s a big surgery to me. It’s a part of me I’ve entrusted to the Earth in a situation I cannot even try to control.
3. Been there. Done that.
While I am aware we are not reinventing the wheel here, routine surgery for one is not for another. Please, try to not one-up others.
4. I had that, and I was OK. (Or my child did)
I know lots of people with  lots of stories. I know kids that do GREAT under anesthesia. I know kids that have gone into comas from it, too. I know that when Addie wakes up she is a mess, her throat hurts, she’s raspy, she needs to be held and fights needed oxygen. I know that she gets ill, but refuses to drink or eat to help it. I know that she will be OK because we have a handpicked team, but brushing off a parent’s fear doesn’t make them feel better… or at least doesn’t work for me.
5. I know someone who died from that.
No joke. Someone told me they knew someone who had a child who died during a routine surgery- then they IM’d me their prayers. Ummmmmmm… I know things can happen, please don’t share those personal stories with me as I’m scheduling a routine surgery.
6. Try having (insert different procedure here).
This one really gets me. For some society has created a need for constant comparisons. Pissing contests. Who has it harder. I’ll tell you what, I know what hardship is. Maybe it is experience (I am still just a mom to one, and if you think back to those days, you too will remember your feelings were different then than they are now), maybe it’s age, or financial status, or location… or maybe, just maybe, it is how I feel as an individual. And it  is OK for me to feel the way I do. Maybe, someday, I will experience a similar hardship to you- but if you’re that person who feels like your life is harder, it just won’t matter… I’ll never be justified. This is, if you truly think of it, tragic for you.

And now that that’s off the table… I appreciate your kind words, your loving emails, texts, phone calls. So many are pulling for Addie to feel 100%, and for that I could not be more thankful. For those who go through major experimental surgeries, I pray for you everyday and I am thankful for the love and support offered to those families. When any family is going through unusual circumstances, the support system that surrounds them gives them the most strength. Thank you, Reader, for your strength.

lots of love,

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Filed under Achondroplasia, Community, Parenting/Family/Lifestyle

Marvelous Monday

And just like that: Monday!

We had a whirlwind week (ummm… it seems like this is a real pattern here), and now that we’re finally home, in our little abode, it is all hitting me. My phone is buzzing and vibrating with photo tags, well wishes, comments, and a list- a list of gifts, cards, beautiful  messages lining cards all meant for Addie. In just 2 years my sweet angel has so many who love her, who celebrate her. For all the people who could be there and all those who wanted to be, I am thankful. How can one little girl have  such love surrounding her? As I type away, I am watching her sleep, and even with her eyes closed and her chest rising and falling, with her gentle snore… there is still the hint of her smile. Her happiness and her personality are always shining through- and this is why people are there. She’s a magnet to love. Our love. Your love. Thank you for celebrating our (almost) two year old with us!

#aisforadelaide #happybirthday #AddieisTwo

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I forgot to update everyone on Addie’s growth (which we truly only chart from her specialists) in the last post about Delaware, so I wanted to share her stats here:
23 Months:
24.25 pounds
29 inches long
20.3 inch head circumference

As I plotted her newest numbers with the doctors on the most important CHART according to her doctors (weight for height), we came up with Addie being at -1 SD for her head, which really put to rest the concern for hydrocephalus because her head is slowing on its growth  pattern. For height, she’s at +1 SD, so she’s right above the mean, and for weight she’s right in the middle. When you see the numbers on a growth chart, her own growth chart, it’s pretty cool! Dwarfism is an umbrella diagnosis with many forms defining it, and I feel very fortunate to have so much research about Addie’s form to help guide us through her possible medical needs.

*  *  *

Lastly, some random to start your week off… Heather, a fellow blogger and advocate, contacted me regarding a cause close to her heart. As I read her story and web page, I felt the need to share the information with you. As a child, I remember my school spending a lot of money to renovate during Spring Break one year. When we came back, there was some discussion about asbestos and that’s what they were doing… as a kid, I had no idea what that meant, but loved that our tiny school had gone through a face lift. Reading Heather’s story brings me such peace- knowing that I was not exposed to something so terrible as so many are. Please read and share her story…

At age 36, I was diagnosed with mesothelioma just 3 ½ months after my first and only child, Lily, was born. I was given just 15 months to live unless I underwent a drastic surgery to remove my left lung. Miraculously, I beat the odds and I’m still here eight years later.

Asbestos is not banned in the US, yet it’s the only known cause of mesothelioma. I was exposed to asbestos through my fathers work jacket when I was just a little girl; my diagnosis came about 30 years later. Once diagnosed, most patients die within 2 years. I am one of few survivors who openly share their story and work to spread awareness regarding the dangers of asbestos.

In honor of Asbestos Awareness Week (April 1-7), I created a webpage dedicated to raising awareness. Although this week has passed, I would love to help educate and protect your readers from this preventable disease!

Here’s the link to my awareness page: mesothelioma.com/heather/awareness

#themoreyouknow

Have a beautiful week, Reader!

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Marvelous Monday

And, we’re back! I hope all enjoyed the superb owl… I was cheering for the Eagles (ha… birds… get it? No? Ok… I’m done being punny). So, after a beautiful week last week and a ridiculously warm weekend, I’m preparing for Punxsutawney Phil’s prediction of 6 more weeks of winter and we are having the oil tank topped off today. Hooray?

This week I am thankful for the blessing of staying home and blogging- for the ability to work at getting my writing career off the ground and spending so much time watching Addie grow. I love that she is so independent, but I also love that I’ve fostered that. I’m there to see it. Most of all,  I love that my readers see that, too.

A few emails come in each month from new parents, or parents-t0-be, of children with dwarfism. Some have a million questions, some have fears, many just want to say thanks. For that I say, THANK YOU!

I love that so many read this blog- for information, for silly stories, recipes, giveaways (like THIS one or THIS one), for charts, to educate… just because you stumbled in here… I love each one of my readers. Truly. But more than anything, I love that so many know that I am here for them. So many moms, dads, grandparents, teens, family members, and friends have clicked the contact form and emailed me. Whether it is just a simple hello, or if you have  laundry list of what-if’s and how-will-I-knows. I am here. I always will be.

From the moment I sat on the hospital bed, watching the littlest wonder finally resting, hooked into a handful of IVs and monitors and heard achondroplasia, I knew we had one of the most beautiful, albeit different, journeys ahead of us as parents. If you need to reach out, do. I have the opportunity to help you, and am so thankful that I do.

*  *  *

And… some info for parents looking for help: The Shriners! This is not just for dwarfism needs, but I just learned about the Shriners and how they help families who may need medical assistance, specialists and equipment! Yes, equipment.

We have recently run into a few issues with climbing, safety and the like with Addie and spoke to our Early Intervention PT about this… but because our health insurance can be a bit finicky about crucial things like sleep studies, we both knew they would not be forth coming with things like chairs, or other home care items. With this in mind, we were directed to our local Shriners Charity Trust and have an application in! We are very excited to have some assistance with keeping our crawling, climbing, jumping, hanging lady safe- without the muscle tone, coupled with her determination, I fear (more) head falls in the future!

For more information, contact your Early Intervention office or local Shriners (Google search!) for more information and an application to apply. Specialists are also in their realm of assistance- some of the best in the country! I hope this helps families looking for another option to care for their child- let me know if you need help finding out more!

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And I know you’re looking for some random, so why not give you some? Take this as you will. For me I mean it for my Life, but some days I have to say this by the hour. Just this second, just this minute, just this hour, just this day, just this week, just this month, just this year. Just this life. Do with it what you will, but remember:

This is it #aisforadelaideblog

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Marvelous Monday

It’s Monday again, and it’s back to being a loner for a few days. Somehow February, the shortest month, will also be the month we see Dave the least in a long time! He’s off on a business trip in Pennsylvania this week and Vegas in two weeks. Although I am not looking forward to going it alone for that time, I am totally excited for girls’ time!!! With all the non-night waiting we will be doing, Addie and I can have dinner earlier every night- and yes- there will be dinner in bed more than once… because I want to watch The Little Mermaid in bed with her as a treat! I am planning some other fun things, like making a cake together (she LOVES to whisk), lots of painting and a movie night. Who else has ideas about what we could do? I’m open to suggestions!

But really, let’s get this party started with what I’m thankful for this week.
Dave, of course! Recently we have made the decision to move closer to his work, which means selling the house. On top of all the other things we have going on, a rough first year of medical bills with Addie accruing a lifetime of debt, and the desire to move to Mexico and live in a shack, Dave drags himself 50+ miles from home each morning, to be away from us for about 12 hours, then come home (usually) to a madhouse of me needing a moment to pee. Alone. Or dinner not quite ready, or so ready it’s now cold, the dog needing to go out, or at least be fed, Addie wanting to be picked up, or put down, or both, toys spread from one end of the living room to the other, and a stack of newly opened bills with the dates and minimums printed on them by yours truly.

But he smiles, says “give me one of these before I deal with that,” and plants a kiss on my lips while picking up Addie, taking off his boots and closing the half-opened refrigerator door simultaneously.

I have launched into Dave a lot, especially under the stress of 2013, but I am learning that we are a team. Neither one of us spends an extra dime. We don’t treat ourselves or feel like we are in need. We want for nothing. We have heat, a home, lots of movies, and enough food to eat. As we embark on this next year, which hopefully includes a move, we also look to each other for more support and more teamwork. Knowing that we are both doing our best and beyond- support and encouragement will only bring more success. I hope to write more and bring you more, Reader, while Dave hopes to further advance his career and give us a bit more comfort, if you will, as a family.

Sometimes I think $10,000 would solve our problems. Then I think… we have each other. We don’t have problems.

Thank you, Dave, for making us the team we are.

#aisforadelaide #martinkadelux

*  *  *

And for some *shock* controversy in the dwarfism community, I bring you The Wolf of Wall Street. No. I haven’t seen it. No. I won’t pay to see it. While I think Scorsese is a genius, I think he bombed this movie because we all know that cocaine and womanizing and ponzi schemes are wrong. But is throwing a human wrong?

The answer, which I hope is obvious, is yes. It is wrong. Regardless of a person being paid or not. It’s wrong. I have so many thoughts on why this movie makes me sad. Why, with a team of incredibly well educated, passionate and driven people, I worked for months on petitioning the writers, actors, producers and the like to cut the scene- which obviously didn’t work beyond getting the scene cut from previews. Why people won’t see that this isn’t funny, because the point of the film seemed to be to show some jerk and how jerky he was while being completely oblivious to his actions. Why though historically accurate to his actions the way this scene was initially shown to garner attention was horrifying.

This isn’t a debate as to whether the movie is good or bad. I care not. This is about whether the portrayal of this scene is necessary, or better yet, if it is safe to show people without giving them the ramifications of their actions. Beyond the embarrassment of another human. Injury, paralysis, death. I have a lot to say, but I have a friend who said it so well that I wanted to share his words.

So, when someone says something like this: “I really don’t see why people are upset with the movie.”Think of this:

It’s amazing how every time I discuss this, I have to bring up racism to explain how it relates. The N word has a sting to it, so much so that it’s referred to as the N word. When I say midget or hear it, it has a sting as well. But of course many won’t understand why I’m saying M-word, or will laugh it off because they are ignorant to what is in that word. The dehumanizing factor of it. How it deems a human being a prop, or a novelty that is beneath the standards of a human being. Many don’t see the big deal of this movie because they don’t feel that sting. They don’t see a minority being thrown as a dart and think, that is inherently wrong. I won’t go see this movie, not just because of that scene, but because I may fear for myself and my wife after the credits roll and we all leave. I can imagine the sounds of people laughing during that scene, laughing in utter ignorance. I can’t imagine the same crowd laughing when a slave is whipped on screen, or a Jew is forced out of his home. I can’t imagine them laughing if an actor were to say “fa**ots” aren’t people. But I can imagine the roar of the crowd when an individual with dwarfism is tossed and used as a toy. We are one of the few remaining minorities that it’s ok to humiliate for the sake of humiliation. That is why I won’t see this movie.

While I understand the shock-and-awe intended by the film, THIS piece says a lot. While I have a lot to say about the action, I have more to say about calling a human “it”.

Let that sink in.

Someone calling your child it. Because they’re a brunette? Because they have blue eyes? Because they have two feet? Because they are short?

This is why I will continue to advocate.
This is why I will not pay Scorsese, DiCaprio or anyone else.
I will create a more respectful world for my child and thousands of other children, too.
Dwarfism is not a disease.
Dwarfism is not a crime.
Cure your hearts. Open your minds.

*  *  *

And some random for your week? I know I spoke about this before HERE and here I am again. I want to let you know that I will have my Revelation 365 giveaway starting tomorrow. Want to know more? Check the link above and don’t forget to come back! Win this for yourself, for your girl friend, for your mother. Win this to change your life. To reveal you. Change your future.

Happy Monday, Reader!
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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Some Thanks are in Order!

So really, my WordPress Stats come in and I am shocked. There is nothing more to say than:

THANK YOU!

Thank you for finding me, no matter how you came…

How did they find you #aisforadelaide #2013stats

 

Thank you for reading, following, sharing, tweeting, retweeting, commenting and posting time and time again. For all the likes and conversation starters. For the kind words and feisty remarks. While there were 211 posts after I took over my own webpage, there were 58 before that in 2013! That’s right, I blogged 269 times last year! For all of you who work out of the home- that means I worked 53.8 weeks of full time work- 5 days a week, no holidays.

My Numbers #aisforadelaide #2013stats

Thank you for showing me so much support and love:

 My Top Commenters #aisforadelaide #2013stats

Sharon, Shell, Melissa, Mary and Kristin. Thank you for all of your love and support this year! Here’s to 2014!!!!

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The Last of the Marvelous ’13…

It’s not like MM will come to an end, but it is something I committed to for a whole year and DID! This first year coming to an end feels bittersweet, and my decision to continue is a true testament to your commitment to me- to learn, to guide, to discuss. Each Monday I wrote a Marvelous Monday post… most in the same format… and shared with you, Reader. I want to thank you for sticking with me, and let you know that I appreciate all that you do for me. From your readership to your sharing, comments and personal messages- I appreciate it all. Whether you stumbled upon this page, are here for a giveaway or want more information about dwarfism- thank you.

#aisforadelaide #happynewyear #2014 #blog

Addie, Dave and myself wish you the happiest of years ahead and hope 2013 was all your dreamt and more, and 2014 is good to you in so many more ways.

Here’s to the next year’s journey of Marvelous Mondays.

Love,

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