Tag Archives: Thankful

Marvelous Monday

Hello Reader! I hope you had a wonderful weekend- and a Happy Mother’s Day to all you moms out there!!!

Normally, I focus on being thankful, talking about something that has to do with dwarfism and something random. This week I want to just share what I am thankful for and explain a bit more.

I am thankful for life.

There are a lot of things that bring me to this, most of all, just being a mom. I never thought I would be graced with a child. I lived a teenage existence that left me wanting little from life, except to end. I was sad, lonely and mean. Mean to myself, mean to people around me. I was scared,  which made me more mean. It was hard- almost as hard to live as to admit. But then, it all began to change until, finally, Dave found me. Fast-forward a few years and I am slowly making bonds with my in-laws and procuring friendships from all walks of life. And best of all, I am Mom to one beautiful, talented, brilliant, HAPPY little girl! She doesn’t just light up our lives, she brings a smile to everyone she sees.

So the look on her face that I saw Friday afternoon was not one I will soon forget.

We were headed to the Omni Hotel in Providence to pick up my race packet for the Cox 5k on Saturday. This was going to be my PR 5k. My first race since August 2011, when I was just pregnant with Addie (following a heart breaking miscarriage). This race was going to define me. My mother-in-law had been spending almost every evening with Addie to allow me to train the course- mapping out the hills with my legs, retraining my muscles to take long strides, lead with my toes, control my breathing and water intake. I was ready. I was under 11-minute miles and was sure I could pull 10 minute miles on race day.

CRASH

It all came to a screeching halt about 250 yards from exit 18 on I-95 North. As traffic gently slowed, I applied pressure to my brakes. When he hit, I had no idea it was coming. I jammed my foot into the brake to avoid being tossed further forward in our lane. I straightened myself from the hunched position as quickly as I could, hearing Addie’s shrill scream from the back. I searched all the mirrors in my car. I leapt from my vehicle, screaming at the young man who hit me to, “Call 9-1-1. There’s a baby in my car!” Not just any baby. My baby. My whole world was strapped into her car seat with the most wild-eyed look I’d ever seen come across her face. The multiple attempts at a lumbar puncture when she was an infant- doctors jabbing her time and time again in her spine- could not rival the fear in her eyes. I grabbed my cell phone from the diaper bag in the backseat and dialed emergency. I cried into the phone, pleading for them to hurry. All I could think was Addie’s spine. It wracked my brain. I was seeing white. It was hot, traffic was flying by. No one stopped- in fact, people honked for us to move. “THERE’S A BABY IN THE CAR!” I screamed as they whizzed by. I felt the driver who was planted in the hatch of my SUV back-off. “STOP!” I boomed at him as I quickly went about snapping pictures of our vehicles. He slammed on his brakes before his car broke free from mine. He was scared and apologizing. “I just looked down for a minute…,” he stammered, phone in hand. The damn thing looked like it was attached to his palm. He was scared. He saw Addie in the backseat. Every apology that came through my window from his lips scraped at my soul. I called Dave, “We were hit. An accident. I’m getting her to Hasbro.” “I’m on my way.” We hung up- the hot air of the day buzzed around me.

Car Accident

It only takes a second to kill someone.

We pulled off to the side. He came to my passenger window again- he was sorry, so sorry. The only thing I could do was ask if he had his insurance information with him. He ran back to his car and handed it to me through the window. I wrote everything down on the paper I keep in my glove compartment. I spoke no other words except, “She has a spinal issue. Pray.” I didn’t mean it as a threat. I meant it as a request. Please pray this does not bring upset to her body- but I’d said it through swallowed tears and clenched teeth. “Is this all your info?” I asked as I handed it back. “Yes.”

My father-in-law showed up. Dave was en route from Weymouth, running out of his office with a “my wife’s been in an accident,” and nothing more. Behind us on the highway I could see where the trooper was that was supposed to be here. I could see the rescue that was meant for Addie. There was another accident. It was hot. Addie was bright red from the heat and scared. Trying to see what was happening, every car that went by causing her eyes to flash open wide. A fire engine pulled over to wait with us. Multiple cars drove by. People on cell phones- talking, texting.

It only takes a second to kill someone.

“I only looked down for a second. Just to see…,” he said again and again. Then his mother showed up yelling in Spanish. I watched his head bow down as she pointed at the crushed pile of green and yelled. He was sorry, and I was sorry I was not able to offer him forgiveness. But, it only takes a second to kill someone. When you look down at your phone at that text message that couldn’t wait, you could change someone’s life forever. You could kill someone’s mother, child, father, brother, son, cousin, aunt, uncle, niece, nephew, friend. You could kill a teacher, doctor, student, the woman that makes your coffee everyday, your local bartender, a man you’d never met and never would. Because, it only takes a second to kill someone.

My head was pounding, I tried to get Addie to drink some water. Where were the cops? Where was the rescue? Finally. We spoke to the officer separately. I filled out my witness statement. “I can’t offer you an escort because we only have 3 cars out today. I’m sorry,” said the trooper. “Thank you for coming. Stay safe- I’ll take her myself.” I looked up at him. “Thank you- you both take care,” he replied. I was in my car and pulling out onto the jammed highway before I could say goodbye to my father-in-law. I drove the speed limit, which only made my head hurt more. My teeth clenching in their respective roots- each one pressing into my jaw so hard I was beginning to feel dizzy.

Instead of picking up my race packet and heading to Pinkberry for some treats, I was bringing my baby to Hasbro Children’s Hospital. “Don’t fall asleep, Addie!” I yelled into the backseat.

We pulled in to the valet parking area in front of the ER where Dave was waiting. “DO NOT take her out of the car seat!” I barked. Be gentle. Bring her in slowly. I was breaking on the inside. She passed the initial exam and we were told it was OK to remove her from the seat. Vitals, normal. Initial physical exam, normal.

Then we were in a room. We waited. The happiest baby passed her neuro exam and flirted with every doctor that walked by (of course). She was checked again. Calls were placed to Dr. Bober, her geneticist. Again, she was checked. She crawled and stood. She was happy… as usual.

AtHasbro

She was alive.

She continues to be monitored at night and we watch for signs of pain. For signs that compression is becoming an issue.

But what about the race? Dave drove us to the hotel after Addie was discharged to get my packet. I limped into the Health Expo with my hospital bracelet on, wondering if I was even capable of running the next day. Weeks of training- feeling like a million bucks, complete with healthy knees and a strong stride had all come to a halt as I felt each muscle twinge from my knee to my ankle like knives stabbing at the limb. My right leg felt useless.

“Do you know your number,” a woman asked from behind the 6 foot table. “203,” I responded. “Michelle Martin… Mar… Martinnnn…” “Martinka. Yes.” I grabbed my pins and moved to the left where I was given a shirt and my bag. I wanted to check it all out. Was there a onesie for Addie or an armband for my phone (which I need!)? I have no idea. I limped back to the waiting car full of my family.

Packet Pickup

I pinned my bib to my shirt Friday night, pumped full of Tylenol and water. “I don’t know if I can do this,” I said, looking at Dave. “Then don’t,” he replied. He was right. Everything hurt. My head was blurring my vision and my legs weren’t working- he had to get my contact case from the bathroom for me. I was broken.

But so are thousands of leukemia patients everyday. The people I signed up to help. The people I raised money for. Those people hurt everyday. I run for Team in Training and I would not let them down.

I woke up Saturday morning and took 3 Tylenol. I laced my shoes up and put on my shirt. I was running to honor Belle Bradley. I was running to remember my Dad and my cousin. I was going to finish.

I didn’t fail, but I didn’t succeed. Unless you’re a runner, you won’t get it. Running it wasn’t enough. My teammates were SO supportive and all the love at the mile 2 water stop urged me to keep going, but there were lots of tears as I pushed myself up the hill. People die from this, I repeated to myself. Dad help me, I begged. Everything hurt, and it was only a 5k.

LLScox5k

I was angry all my training had been stripped from me for a godforsaken text message.
I should have been thankful for my life- I smiled at the thought- but reeled inside.

I jogged a bit (I had the most amazing coach by my side)… but I walked a lot and limped a bit, too. My 30 minutes slipped away. They became something closer to 35. The soreness throughout my body raked up my spine, splitting my body down the the right ankle bone. I was doing this to save lives, but I didn’t feel much like I was living well on my own. My race I’d worked so hard for was taken away… it only takes a second to kill someone.

I grabbed ice from the med trailer at the race, shared a banana with Addie and was driven home by Dave. I showered and packed myself into the car and headed to the ER (the only place that will take “3rd party insurance”). X-rays showed no break, but the doctor gave me a referral to an orthopedist and an air cast and advised me to stay off it. I guess he’s never been a stay-at-home mom. I plan on seeing a chiropractor to try and alleviate the headache that’s going on day three.

I spent Saturday night getting my tattoo for Addie (a blog in itself), my first in 5 years, and eating dinner in Newport with my loves. Mother’s Day was beautiful and I got to spend it with two very important women: my mother-in-law and sister-in-law.

mothers day pictures

I am thankful for life.

This was supposed to be a race-recap. A thrilling ride for you to take with me about making it back from a near-bedrest pregnancy to a PR. But in place of an age-group first, I’ve amassed a collection of hospital bracelets.

IMAG3150

There’s no making this OK. Instead, it’s a PSA: Put down your phone. Save a life.

As we pulled into the driveway from Hasbro, I had to snap this photo. She was finally sleeping. Safe. Home.

Homefromthehospital

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Listen to Me: Marvelous Monday

I’ve grown up, bought a house, married, gotten a puppy, had a baby, cooked a few thousand meals, given up part of my identity to be known as Mom or, more accurately, Addie’s Mom, I decided to stay home (at least for now), and I have a handful of friends I could not get through life without… then I met my fellow Rhody Bloggers and that changed. I met people that I didn’t want to live without. Women with stories that made me cry til I was dry, laugh til I was crying, buy products I never knew existed and teach me how to be a better Mom, wife, friend and human. This week, and every week going forth, I will be thankful that I was able to be a part of Listen to Your Mother. I didn’t make the show (you can read about that HERE), but I got to see it, live the moments each woman bravely shared- whether it’s a life lesson about grocery shopping with kids, how we struggle to overcome our insecurities, having emotions we wish we could control, about our mothers shaping us just by believing in what we could do- I lived it. I sat between two new friends of mine, as we each shed tears, shared laughs and then drinks after the show- it was an experience I will treasure always. Thank you to Carla and Laura for producing the best first LTYM: Providence!

Me, cast member Jackie Hennessy of Venting Sessions, Carina and Tera of Girl Gone Healthy

Me, cast member Jackie Hennessy of Venting Sessions, Carina and Tera of Girl Gone Healthy

We are doing very important work with our pens... like math.

We are doing very important work with our pens… like math.

New friends and snuggle buddies <3

New friends and snuggle buddies <3

 

My random of the week is… GET IT DONE NO MATTER WHERE YOU ARE! If you’re not following me anywhere but here, maybe you haven’t been as inundated as you should be with my Girl Gone Healthy posts. Well, that sucks for you! Tera is an inspiration as a woman, wife and mother- not to mention a warrior. This lady gets it done, no matter what. I’ll keep it brief, but the next time you say you can’t get your workout in because you have to get the food shopping done, you darn well better park FAR away from the front door. This is Tera this weekend, in heels, walking the 4 flights of stairs (she did it 3 times) to get a little workout in. And stairs? They’re no joke.

In heels, 4 flights, 3 times. Get it done.

In heels, 4 flights, 3 times. Get it done.

Lastly… dwarfism! Lots of people have pointed out Addie’s belly, so much so, that I began to get concerned. As I have done many times before, I turned to my POLP (parents of little people) friends and asked: is that normal? I kind of loathe the word, but truthfully… we all have our own normals in life. But I digress… here is some information about why there is a belly on the little beauty (besides the fact that she eats very healthfully… and completely). Children with achondroplasia often have lordosis, or sway back. This makes the belly look like it’s sticking out more. A smaller chest also gives the appearance of a large tummy. Other factors: smaller space leaves the belly the place where many achondroplastic children show weight and it’s super common that after eating the belly is visibly more full!

As I wiped my forehead of worry-lines, I looked over at my sweet girl. That belly so many like to point out: it’s beautiful. It’s ticklish, it holds many kisses, it flattens out against my body as we snuggle in the morning, it rounds to my hand when I carry her facing out, and fits right underneath my chest when I carry her to me. I love that belly.

Belly I Love

**AND WE HAD A FIRST THIS WEEK… JUST WANTED TO SHARE: Addie climbed up a step!!!!

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Marvelous Monday!!!

Could this weekend have been anymore perfect in ‘Lil Rhody? It was beautiful in the Ocean State- I hope it was where you are, too!

This week I am SO thankful for resilience. I have been blessed to have two of the most resilient people living under the same roof as me! Miss Adelaide had her one year check up Thursday afternoon, and with 3 shots and a finger prick (lead and iron), she was happy as a clam (are clams really that happy?). After coming home from the appointment, she took a brief nap, ate a hearty lunch and came to the Local Author Night at Barnes & Noble in Warwick!

With author Jackie Hennessey

With author Jackie Hennessey

Days later, we are still fever free and happy as ever… who could be sad with an awesome play set Grandpa put together??

LittleTikesPlayset

And then there is Dave. A little back story: Dave was NOT a morning person when we first started dating. He was often at his shop at 12:04pm everyday, which opened at 12:00pm. But, somehow about 6 months before we were married, Dave started to make me a hot breakfast every day before work. Sometimes this meant him getting up at 6:30am to cook… then we got a puppy and I started running at 5am- yet, Dave still got up and figured out the time to have coffee and breakfast ready for me. This isn’t about breakfast, in fact, there is a big change coming in our life that makes breakfast look a bit less important than my daily coffee requirement (not a baby), but his sacrifices have afforded us much in life- whether it’s a few hours of sleep, letting go of old dreams or selling his most prized instruments- I’m blessed to have such a man.

Mountain Man <3

Resilient and resourceful <3

When it comes to dwarfism I certainly explain what I can, but recently it’s come to light that people have a need to know what to call Addie. Here is my definitive answer: Addie. It’s not rocket science, it’s just her name. While I appreciate so many friends, acquaintances and strangers wanting to be “PC” (hey, I’m the CPL!), there is no need to describe her as a Little Person. She has a form of dwarfism, but she also has a beaming smile, a head full of strawberry blonde hair, a million teeth coming in all at once, the sweetest little voice, dance moves that would shame those on DWTS, and a love of hugs unseen before. While I will focus on dwarfism awareness, please know that there is not one person out there with dwarfism who should ever be defined by their genetic difference. Little People does not describe intelligence, emotion, desire or ability. LP can run triathlons, be doctors or school teachers. You see, Little People are just people. Until you describe me as your tattooed, new mom, ice hockey and football fan, half Catholic half Jewish, blue-eyed, 5’8, size 8 1/2 shoe wearing friend with brown hair who drives a Ford, you can just call Addie Addie.

Lastly… my random of the week: Mapmyrun app. While I usually use the MapMyRun website, I found that logging in the app and tracking my run (instead of remembering where I went and when I left and when I returned, etc.) as I was doing it gave me more accurate results, I was able to see a map of where I was, which prevented me from getting lost at Roger Williams Park, and it was EASY! It’s the overrun runner’s app! I still have my daily runs that I know in my sleep (and I time with my Garmin), but when I go off my beaten path, it’s nice to know that I can map it easily and not have to question where I am! :)

Have a beautiful week, Reader!

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Marvelous Monday

Hello Reader! I missed you last Monday- BUT the site made a seamless transition to its new host and here I am!

As many read yesterday HERE, I lost my father 15 years ago. This week, what I am thankful for is my niece Hadley. She is in my life because we were meant to have a special bond- a connection only an aunt can have with a child- to keep each other smiling when we forget how. I took Hadley aside as her party was winding down and we had a little talk. She smiled at me, and drooled a bit- to most it would seem that she didn’t understand me- but her smile came just as my eyes began to tear up and she let me hug her to me. It was a brief moment, but I am so glad that we had it. I love this beautiful girl!

Hadley's Party

My random of the week is date nights! I agree everyone needs some time without their children, but I don’t know that I’m ready for it. We went out to The Grand Tasting for Eat Drink RI festival with tickets that we won.

EATDRINKRI

It. Was. Amazing! Not just because we felt like we were just dating again (getting a little day-drunk will do that to you!), but because we hadn’t been out in so long and it wasn’t forced. I felt comfortable, albeit nervous, about leaving Addie, but I knew that she was old enough to communicate her wants and needs well enough to my mother-in-law and that she would have fun. Lots of my friends need to go out, but that need is not something I feel yet. Maybe it’s because I don’t let myself- it’s not like we have excess cash to go to dinner or the movies, but truly, I think it’s because Dave and I don’t get much family time and that’s the time we want to spend together. We dated and got married and had 3 “single” years together- in our first year as parents we wanted to be parents as much as we could! They’re only in babyhood once- we will be married forever <3 Thank you to Jen at Keekoin for the opportunity to have a beautiful afternoon together and my in-laws for taking such great care of Miss Adelaide!

Addie at InLaws

Lastly, my information about dwarfism is an update on Miss Addie AND a little bit about why we travel. We went to Delaware last week and had a great check-up (and first visit) with Dr. MacKenzie. Addie didn’t get the full skeletal work-up (thanks insurance company), but she did have two spinal views and an x-ray of her lower limbs (read: legs) and all of her “pictures” looked great!

As I’ve mentioned before, having the proper care for children with skeletal dysplasia is very important. While many children are perfectly healthy, monitoring their bone growth, as well as their overall health and development are very important factors to having a healthy adult life. Just like an average height child with a difference, parents want to bring their children to the person who knows best about their child’s condition- whether it is thyroid or behavioral, a hearing loss or vision problem, tippy-toe walking, etc. Addie goes to the closest doctors who specialize in, not just “has patients” with, skeletal dysplasia. Thankfully, the closest doctors are also on the medical advisory board for the LPA- which makes me feel all the better about her going to them. Dr. Bober (who was away on personal leave this visit) is her geneticist, and Dr. MacKenzie is her orthopedic specialist. When we saw him, Addie was in great spirits and loved playing on the table (i.e. eating paper).

Exam

We travel 350 miles (each way) to Wilmington, Delaware to A.I. DuPont Hospital, where we see these two specialist who work as a team, every six months. It’s amazing to see Addie’s progress and the amount of work that goes into proper care- all the questions, the physical exams that are done so gently- using minimal invasive tests like blood work- in favor of research and a thorough physical exam, the listening and true concern for each question we have, and making sure that we are comfortable with the care plan given- all make Dave and I so happy we are able to make the drive. We are lucky that my parents live about 80 miles north of the hospital so we stay with them on our visits, but there is a Ronald McDonald House there, too, and I know so many families who just love how welcome they are there. The hospital is pretty great, too, because right outside they have a beautiful playground with lots of places to sit and enjoy the weather! Addie LOVED playing after her appointment and got to go on a swing for the first time! …Of course for our picnic, we went to the local Saladworks (YUM!) and got our favorites to enjoy :) I wish Rhode Island would open a location!

Playground at DuPontEating together

This was Addie’s first visit to MacKenzie, and he saw that her kyphosis is still there, but he is hopeful that it will straighten itself out as she learns to walk and hold her spine straight, and her legs look great, too! I have been SO worried about her ankles, as they seem to bend out- I’ve never seen another baby with ankles like Addie’s- but he told me that that was normal. I have learned to laugh when I hear that word, but in this case it made me smile. Now I know that it’s normal for my achon baby to have ankles like this- sometimes it’s strange to be normal :)

Thanks for catching up with me! I hope you have a beautiful week ahead and a Marvelous Monday, today!

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Marvelous Monday

Sorry for the late Marvelous Monday post! It was quite the weekend here… thus I will be brief!

This week I am thankful to be a part of such an amazing group of women. I am a Rhody Blogger, and there is a smaller group I support called the Rhody Bloggers for Good- they are amazing women. Truly inspiring. This weekend they hosted (with La-Z-Boy Warwick) a sit-a-thon for Belle Bradley, who is battling cancer and her mom, Melissa- who is battling not just Belle’s illness, but the medical bills associated with the disease. I was blessed to be a part of the festivities, donating things to the yard sale and sitting for a few hours tweeting, instagram-ing and Facebook-ing the event. Together, $10,000 were raised to help the Bradley family!

From Rhody Bloggers

From Rhody Bloggers

My dwarfism fact of the week brings up our week ahead! Many children with dwarfism see genetic and orthopedic specialists, among many other types- there are very few to actually specialize in skeletal dysplasia, however. In Addie’s case, we drive over 300 miles each way to see Dr. Bober and Dr. MacKenzie for genetics and orthopedics, respectively. It’s a lot of driving, and we do it twice a year- but at least it’s not a flight away- and we are so thankful that Addie has the best care possible from two of the most amazing doctors. There are many children out there who have to travel much further than we do, or don’t have any access to a specialist at all. For all we have and all the properly trained doctors we have, we are so blessed! We are heading to Delaware this week, in fact!

Lastly, my random of the week: With my baby girl coming up on one year, it’s amazing to see her growing into her own person, but also taking on traits of both Dave and myself. Here she is doing her first instructional vlog on how to blog and her first typed piece below! It feels good to have such a talented baby!

  Bbn sc jdfbfghj0 05202 v0bvc dxd0 vc vc vc vcv cc kjm,

//’,./,.nv c  vb 0 n

Ng hbfnjhgvjhnh

Have a beautiful week!!!

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Marvelous Monday!

So, It’s been QUITE the weekend. I think I am stressed for the next two weeks before they even happen. Don’t you hate when you do that to yourself?! I am combining MM with Mom Before Mom because… well, sometimes life just all comes together in sweet harmony. Read on!

This week I am thankful for my beautiful girl and her power of healing. We had a wonderful visit with the ENT two weeks ago to check on her tubes and they’re doing great! She seems like she is hearing SO much better, but I will have more conclusive, scientific results after our audiology appointment in May. Until then, we are back in the water and loving out new ear plugs- they’re even fun to try and eat!

Ear Plugs

Which brings me to the Mom Before Mom prompt from All of me Now this week: What was the first piece of music you couldn’t stop listening to? What was the first piece of music you bought?

I am so glad that Addie can hear! I can say that I remember driving my sister crazy when I was about 15, listening to Dave Matthew’s Band over and over- more specifically, Every dog has it’s day every day has it’s way of being forgotten- “Mom it’s my birthday.” What would you say?, and then restarting the song. Ah, the joys of newly made compact discs.

But my first favorite memories of music are the nights after Flyers’ games, when I was half asleep in the back of the car and my Dad put on Oldies 98fm Philadelphia for Doo Wop Sundays. As I drifted off to sleep, knowing that I would wake up in the morning safe in my bed, I listed to some amazing songs like Earth Angel, In the Still of the Night, Sixteen Candles, I Only Have Eyes for You, Why do Fools Fall in Love, A Teenager in Love, Pretty Little Angel Eyes, Life is But a Dream, Blue Moon, Tears on my Pillow, Sunday Kind of Love, Since I Don’t Have You, and my all-time favorite Unchained Melody. These songs all bring me back to a time where I knew (almost) nothing bad in this world existed. Where all evils could be cured by a hug from my Dad.

I want this for Addie. I am thankful that Dave and I can give her the gift of music, and that Dr. G was able to give her (back) the miracle that is hearing. Dave is a very talented musician and he needs to share that with her. I want to give my little angel all the happy memories and related history that comes along with different musical eras. To cherish memories that were both mine as a child, and my Dad’s (him being young in the 50′s and growing up with this music), gives me the “old soul” I’m said to possess. Passing on my love of music is something I am proud to give to Addie and cannot wait to share with her more and more as she grows into her likes and dislikes… or maybe I can wait- if it means NOT having to listen to the same Sesame Street song over and over and over!

* * *

This week, in light of Easter, I’d love to focus my information about dwarfism to weight. Addie had a beautiful Easter shoot last weekend, as a model for one of my wonderful friends, Lynette, owner of Exalt Photography.
Exalt PhotographyYesterday was Easter and we had a beautiful time as a family! We went to Home Depot, snuggled in, boiled eggs we never dyed, and had a wonderful dinner at my bestie’s house… we also had an Easter basket!

Easter Basket

… with no candy or food of any kind involved. Someone made a point of emailing me to tell me that I shouldn’t feel superior just because I don’t give Addie sweets or candy because she’s young and I will someday. My response, quite simply, is OK. I don’t feel superior to anyone for any reason. The feeling that you need to email me to tell me that giving Addie candy and sweets is in some way inevitable is a given, makes me wonder why you are so passionate about this issue. She will have these things, but they do not have to come from our home. In no way does that ever need to happen. Will it? Sure. But I have made a parenting decision- equally with Dave- that sweets and treats will not be a part of our holidays. Instead, we choose books. Addie has gotten a special book for each holiday thus far. Perhaps she will get a special DVD one year, or a specific outfit. But, there are so many opportunities for junk outside the home, there is no need for me to spend my money supplying such things. It is not a judgement on what others do… it is just our prerogative.

With that being said: lots of other children do not have the automatic predisposition to obesity. Not being overweight. Obesity. I am a healhty person by nature. I like salad, I enjoy running and I come from a family of athletic people. While Addie is partly my genetic make-up, she is also Dave’s, who comes from a less athletic family. And she’s also something completely different from us. She is her! Children with achondroplasia have a high-risk for weight issues. I’ve been on a few sites in the last 10 months that have parents asking for dietary tips for their achondroplastic children… their 4 to 7 year olds, who are being placed on dietary restrictions because of their weight. That is terrifying to me. In a world where primary concerns are looks and weight, especially for girls, I am concerned for Addie. I want to give her the right foods now to avoid the issue of childhood dieting (which can have terrible emotional consequences, and often times don’t last) later. If Addie doesn’t have fast food (which Dave and I do not ever eat. Ever.), juices (they’re all sugar) or cake and candy, I won’t be setting her up for failure. Just a bite here and there at home, as regulated as they are, do not account for what she will encounter outside the home. Just a few extra pounds on her will effect her hips (she has dysplasia), knees and ankles, not to mention her spine- in-which she has some minor issues now.

It may seem like we are “hippy-dippy” (as I was recently called and chuckled about) because we have no TV, we don’t ever go through a drive-thru and I refuse to give Addie junk food (she snacks on peas- and rarely her auntie gives her puffed cereal), but I’m truthfully just trying to give her the best start to life as I can. How many play dates will be spent playing a video game or watching a movie (she still has never watched a movie)? How many parents will grab chicken fingers from BK for dinner when Addie gets a ride home? How many birthday parties will have pizza, cake and ice cream? A lot. I want Addie to learn about wonderful raw foods, foods cooked with love and care- prepared with whole ingredients that she can identify and learn to use in her own ways. I want Addie to learn how to play outside in the hot Summer sun, the warm Spring air, the brisk chill and leaves of Fall, and the snowy days in a New England Winter. I want her to like to dance in the rain, the way I do. There wasn’t a reason to be inside (except for lightening and thunder) as a child, and for that reason I am an active, healthy adult.

I guess as crazy as I seem, I am not trying to restrict her from ever having certain foods or watching TV, but I make the conscious decision to not have them in my home (for my sake as much as her’s), and to not spend my money on them. What other people do and all the elements of the world… they’re not something I can control. Addie will make decisions for herself as she gets older, and I will make those decisions for her now, as other parents do for their children. Sometimes Addie will be in the crosshairs of our family values and others. That’s OK! That’s growing up and becoming your own person- acceptance, respect and, at minimum, tolerance of other values are wonderful life lessons. I never ate Big Macs and therefore I never want one. I don’t battle with weight or weight-related illness. It’s just that simple. Many things in Addie’s life are bound to be struggles. With a healthy lifestyle, weight doesn’t have to be one of them.

* * *

My random of the week (of which there are two) is a BIG Happy Birthday to my amazing hubby Dave and his business partners Domenick and Jamez. Their business BSharp has been open for TEN YEARS!!!!! It may not be what keeps us afloat anymore, but it is an accomplishment to keep a business alive for 10 years, especially in this economy, especially in Rhode Island. Just ask Curtis Montague Schilling, also known as Curt, who couldn’t make a business work with 75 million dollars. I digress. Happy birthday, BSharp! I love you, Dave. I am so proud to be the wife of such an amazing, dedicated man. Working two jobs to keep your ladies together means more to both of us than we could ever tell you <3

Bsharp

Second… IF YOU HAVE DRESSES YOU WANT TO RID YOURSELF OF AND ARE IN THE AREA…
Dresses

It’s back – Say Yes to the Prom Dress! The Pawtucket Community Partnership Team Against Violence are looking for donations of gently used prom dresses! Make arrangements to drop off your clean and generous donations to make a teen’s DREAM COME TRUE by calling us at (401) 723-3057 by April 12th.

Addie and I dropped off 15 dresses last week

Addie and I dropped off 15 dresses last week

Dresses 15

We will pick dresses up from you and make the delivery! It’s so easy to help!

Have a fantastic week, Reader!!!

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Did someone say Marvelous Monday?

Are we there yet? By there, I mean Wednesday… when Dave gets home from his business trip.

I feel so whiny about him being gone, but the worst part is he’s not in the US, so I can’t talk to him. He is in the UK… it sounds more glamorous than it is- he could be in Ohio and it would all look the same. There is no sight seeing, or time to go out. He goes from the airport to a hotel and to work and back and forth until the last day that he ends up going from Heathrow to Logan, back to his car and home to me! His hotels either have WiFi that costs £4 per 10 minutes, or it’s free and set up really poorly. Either way, he’s been gone since Saturday at 5 and I have yet to talk to him. What I am thankful for, however, are his parents who fed the remaining Cranston Martinka’s last night and sent me home with food for lunch, fresh fruit for the week and a bottle of pinot noir. Sometimes, when the hubby isn’t there, his parents step in for the win!

My usual dwarfism fact really isn’t so much fact as life this week. Many of my fellow humans have been thoughtfully (note: sarcastic) reading about the pickles (still) and sending some of the most vile emails I’ve ever read. I will never share intimate details about them on the blog, but I will respond to one reoccurring theme: “I’ll bet this lady didn’t care about the pickles before her baby was born that way.”

One: Don’t refer to Addie’s dwarfism as that way. It’s so ignorant sounding, I can’t imagine anyone wants to come off as that silly.
Two: I’ve always cared about pickles. They’re delicious.
Three: I never noticed the pickles before, and if I had- YOU’RE RIGHT! The naming on these jars didn’t strike a chord in me, which is why I understand when people tell me they don’t get it. Many often follow up that statement with, but as a parent, I support you. This is educating others, creating conversation, and the more I have shared the m-word and its history and the pain, the more response I am getting- in the positive.

And so, to respond to that… I guess all I can say is: you’re right. Before I was personally effected by dwarfism in my family, I didn’t have the same passion I do now. In the same way that many men don’t care about the fact that many heart medications cause erectile dysfunction and the medications used to treat ED are unsafe for men with heart conditions, until they’re in that place in life. Guess what: I don’t understand why you’re so upset about those medical issues. I’d prefer to live than to get a boner- but hey, that’s just me. I don’t mock, criticize or threaten anyone who has sued, written or otherwise addressed this issue. My point is, evolution happens as time goes on (duh!). When one person is effected by something, whether at birth or 30 years down the road. Whether it’s something they’ve always been passionate about, or they just recently became involved with. Life happens when we’re busy living it- all we can do is try to improve each step and make sure our feet are on solid ground- this is what I am trying to provide for Addie. I want to lay a more solid path for her.

I went into this blindly. Pathetic, I know, but it’s kind of how I fell into Addie’s diagnosis. I have been trying to write about this exact topic. I’m just learning to see and trying to help guide other parents, if that makes sense. In the end, I just want people to know that many POLP (parents of little people) are in this alone, or lonely, at least. Eighty percent of us have no experience in our own families of having a LP in our lives. We aren’t sure of the medical implications, the social interactions that will occur, or how to best protect our kids. We are doing the best we can- just as most parents are. If this whole situation still seems to be just about pickles, I invite you to come back to the blog in a few weeks when I begin the series about name changes. From hotdogs to lacrosse teams- this is a movement. I invite you to join, or honestly, get the heck out of my way.

And my random of the week:

HAPPY BIRTHDAY, MOM!

Yesterday my Dad would have been 64. I tried to hold it all together, but around 11pm when I rolled over and Dave wasn’t there, I let a few tears fall on his pillow. Today, I woke up smiling. I have a beautiful Mom who celebrates her day today! She is the most amazing woman I’ve ever met- or could ever meet. She is strong and resilient. She gives herself day-in and day-out to her patients (she’s a family psychologist), and then answers her cell phone when she’s not in session to counsel my sister, two brothers and myself in our daily lives.

I know I mentioned in a previous post that when I grew up I wanted to be me… I also hope to, in part, be my Mom. <3

We could be sisters!

We could be sisters!

Happy Monday, Reader!

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Marvelous Monday!

Hello, Reader! I hope you had a wonderful weekend, and did not imbibe too much! If so: Advil + Tylenol and have a pint of slightly salty water and lots of plain water… at least that’s what my college taught me ;) I spent my Sunday celebrating my little beauty’s 11 month birthday… where does the time go?!

Addie11Months

This week I am thankful for wine stoppers! You know when you open a bottle, and you know you won’t finish it (at least you hope you won’t), but you tore the cork to an unrecognizable heap of flakes-that-once-were? That is where stoppers come in handy. I got a nifty owl-topped stopper as a gift (post-baby gifts are pretty amazing) and I am SO glad. It’s cute in the kitchen and makes me feel a bit fancy. For those times when you’re trying to open the bottle of wine with one hand, while you stir dinner, soothe the baby, finish the dishes and feed the dog with the other- my wine stopper has saved me! I no longer have to look to where the cork went to, pry it off the corkscrew, or figure out how to slam it back in there after I let it breathe and pour myself a glass… thanks to this awesome invention. Cheers to you Monday warriors- may your evening [glass] be filled once tonight, and the remainder saved, nice and fresh for tomorrow!

I am excited about this week, because I have some information about dwarfism that is both interesting to learn about, and crucial to new POLP (parents of little people). This weekend, new parents asked me about getting an MRI for their child who is not suffering from pain or sleepless nights. This child is just a few weeks old and also has achondroplasia. Addie just had a sleep study, and I think that’s what prompted this email to me.

Background information: Spinal cord compression is very common in people with dwarfism. Compression is the narrowing of the foramen magnum (at the base of the skull) causing the spine to become pinched. In many cases this narrowing causes pinching on the nerves and can cause pain, as well as central sleep apnea, which is when the brain tells the body to stop breathing. Without the presence of pain, it is hard to diagnose compression without an MRI or a sleep study. Due to the American Pediatric Guidelines on what tests should be performed for a child with achondroplasia, many doctors automatically prescribe an MRI. Because you have to be perfectly still for an MRI, many children are put to sleep for the process. Anytime someone is put under, there is a risk. For very young children, there is a higher risk. For someone with different spinal complications than an average height patient, there are more concerns and risks. With that, people with dwarfism often go through many x-rays in their lives, and the more you are radiated, the more you become susceptible to diseases that stem from radiation. With that being said: specialists in the genetic study of skeletal dysplasias suggest a sleep study (or multiple sleep studies) to rule out compression long before they suggest an MRI. Again, this is without the presence of pain. If there is pain involved, there are other factors that will be discussed in terms of necessary imaging and testing.

So… I wanted to share some of my responses with you. I think it is both educating and enlightening. While there are so many questions as to what is right or wrong for your child, I find myself, with other parents, wrestling with some heavy decisions about excess imaging (Addie is x-rayed every 6 months for the first 6 years of her life as a standard procedure with her geneticist), surgeries, testing and the big decision Dave and I made to spend time and money driving Addie to Delaware twice a year (305 miles each way) to meet with the top geneticist and leading orthopedic doctor specializing in skeletal dysplasia. We seek information about who is the best neurologist, ENT, pediatric dentist who has seen dwarfism, EI specialists who understand the physical limitations of younger children with achondroplasia… the list goes on. But, here, I’d like to focus on the idea of the MRI. I feel it is not necessary without presentation of pain AND/OR a negative sleep study showing an excess of central sleep apnea occurrences, with or without a severe loss in oxygen efficiency in sleep.

I am not a doctor. What I say below are my opinions as a mother. The stated opinions below should not be taken as medical fact or used as your final decision without consulting a medical professional. Here is our back and forth. I edited some information so that this family would not be recognized.

Our child is currently only 6 weeks old and the doctor wants to schedule an MRI, in which he will have to be sedated. It just scares me to have someone so little sedated, especially with all of the complications associated with sedation

Why an MRI? Is he feeling pain, in your mind? Addie has sleep studies instead of MRIs because I won’t put her under for imaging.
Is it a geneticist or pedi? Do they have experience with achons?

Currently it is the Pediatrician. He is not feeling any pain, as far as I’m concerned. She says that she is following the American Pediatric guidelines associated with Achondroplasia. She wants to consult with his geneticist first and then we are to go on from there. I don’t think she may have much experience with Achons but I am told that is the case with many. I’ve had many moms on POLP tell me that their children underwent MRI’s in infancy because it’s standard and they encourage it. I’m very much against it.

YES- she is right. The American Pedi guidelines suggest it, but that is for doctors who have patients with dwarfism, but who are not familiar with the condition, as they need guidelines.
Find a geneticist who works with LP and go from there. Dr. Bober in Delaware (we drive 300+ miles twice a year) was so glad we didn’t get an MRI. It’s ridiculous to image any child unnecessarily. They’re looking for compression in the foramen magnum, which will appear as pain and/or central sleep apnea. Apnea can also be caused by obstructions like the tonsils or adenoids. This is obstructive sleep apnea. A sleep study is the best place to start, especially if you’re not noticing pain cues. A sleep study will give results about if apnea is occurring and what kinds are, if at all. With this information you can see a neurologist, for central/foramen concerns, or an ENT for obstructive concerns.
If pain were an issue, I would go for the MRI, but with all the imaging our babies need to get in life, I, personally, want to limit unnecessary exposure.

Sleep studies aren’t “fun”, but they aren’t dangerous- putting a baby under always has risks.
Lots of kids still get them, but it’s not something that the leading specialists in skeletal dysplasia find necessary unless they see issues elsewhere first.

And so… there is a bit of what happens in our lives. It’s not tragic, but it’s a lot to think about just a few weeks after your baby is born, especially when it’s not something (like vaccines or schooling) that most parents think about long before their child arrives. Thank you for being more aware with me!

Lastly, my random of the week is a review! I was not paid, so don’t worry about advertising here!

As many of you know, Dave and I don’t go out. Not like “oh we never go out, but we get take out”… we don’t go out, we don’t get food out, we don’t grab a quick bite places, or the like. We simply do not have the funds for that… so, when we decide to have an afternoon date, we hope it’s out of this world. Let’s just say the Kitchen Bar in Providence was not that.

I chose to stop here because there is a restaurant with the same name in Willow Grove, PA and I love it- they are in no way connected, but I figured we’d give it a whirl. As we entered with Addie (and her booster seat cover), we were greeted by a customer with Alzheimer’s who shook Dave’s hand and told us how beautiful Addie was. I already liked this place from the name, and this older gentleman really brought a softness to me. Now… where was someone to seat us in the small, nearly empty place? Ahh… there she is. She’s the one who seemingly doesn’t have a smile and the reached past Dave without so much as a grunt to grab some menus and ask us if we needed a highchair. It was a rough start, but we figured: no big deal.

SittingatKitchenBar

Our waitress (also the hostess) came to take our order: Dave the poached pear and sweet potato salad to which he added grilled chicken and the Reuben for myself. She walked away before I could ask for a cider. Dave caught her attention on the way back from another table and ordered one for me. She asked if I wanted a glass, to which I replied “No”. She walked over, pouring the cider into a glass. Hmmmm…

As I sipped my cider, Dave took Addie to the men’s room to change Addie. There were no changing tables/stations in either bathroom, but they were really clean (bonus). Dave changed Addie in his lap- he’s such a resourceful Daddy!

When our food came, Dave was so glad he had added chicken, as there was barely any sweet potato (small bits) and just a few thin slices of pear. He made a note that when you have small bits in salads, a vinaigrette tends to lose those pieces, but a creamy dressing picks them up. This salad just wasn’t exciting, the elements were lost and without the chicken (which was delicious and Addie ate half of), he would have been left a hungry man. Then there was my sandwich. I LOVE Reubens (call it my Jewish heritage), so I should have read better. There was no Russian dressing… but there was SO much salt, I’m not sure that dressing would have saved it for me. Thankfully, the fries were amazing. Crispy, not salty or greasy- just delightful… and plentiful! I think there were enough fries for an army!

FoodKitchenBar

As we cleared our plates (except for the fries and the bread of 1/2 of my sandwich), we waited; Addie slowly growing impatient. Dave and I downed our water, and waited. Our waitress bussed and reset a table, refilled a customer’s beer at the bar and checked on another table all while we both attempted eye contact. From the moment she’d set our plates down, she had not returned to check on us once. With Addie in her coat and finally showing that she was done and ready to nap, Dave got up and went to the opening of the kitchen (it’s an open kitchen and he just popped his head in and said “if we could have the check, that would be great!”- in the sweet way only Dave’s patience allowed. She plopped it down gently next to him a minute later, took his debit card and returned the black folder to Dave to sign. She quickly returned for it less than 30 seconds later. I have to admit, I was miffed. Not once during our meal did you check on us, but you came back for your signed receipt faster than a speeding bullet? I’m confused by the service, or lack-there-of and the food was less than wow-ing. Personally, I would not come back here unless it was to watch a game on one of their smaller TVs on a day when there were few people there again. The bar was well stocked, and people friendly enough, but when you spend money eating out less than 6 times a year (this includes take-out, dates and sandwich stops), knowing that you’ll have good food and a good experience means a lot. You want to spend those few precious moments that someone else is waiting on you in a comfortable and welcoming environment. For us, that was not the Kitchen Bar.

The aesthetic design of the pub-style restaurant was beautiful- simple and clean, and the location on Hope Street keeps you right in the hustle and bustle of the famous East Side. Stop in for a drink and some fries… but leave the kids and true appetite at home.

My favorites <3

My favorites <3

Have a marvelous week!!!

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Filed under Marvelous Monday, Reviews

Marvelous Monday!

Oh my goodness… every Monday seems to catch me by surprise! Where does the weekend go?!

To begin, I am thankful for new friends. This weekend we had the pleasure of going to a new friend’s house for her son’s 5th birthday. When we got there, everyone recognized Addie right away (even the hubbies). It was amazing to watch people smile at her and not look to question. Addie’s hair was pulled back, which I love because it keeps her hair off her face, but it also showcases her larger head. I think she’s drop dead gorgeous- her golden brown wisps around her temples and her big blue eyes shining, but every so often someone mentions her large melon and it darn near drives me up a wall. However, when we walked in the door, there were oohs and ahhhs. It may seem normal for most parents to hear those sounds, but to this mama, those sounds are pure music to my ears. I am so blessed to have met this family, and have the opportunity to expand my blogging, fitness and personal relationships.

At the party <3

At the party <3

Information about dwarfism you may not know… you cannot discriminate against someone simply because they have a form of dwarfism. I’ve been speaking with a wonderful woman who has run into numerous issues when trying to sign her child up for daycare, and being given the run-around as to why they cannot accept her family. When it all comes down to it, there are so many ways for someone to say no that this family has had to provide the accommodations, adaptive materials and planning guides to ensure their child’s safety, and still there is much hesitance due to the “condition” their child has. You may be thinking that’s illegal and call a lawyer, but please remember why my recent journey has been met with such resistance: the world is ignorant to the facts about dwarfism. The LP community is underrepresented, and it is apparent in the daily lives of many. I hope you continue to join me in raising dwarfism awareness!

… While I’m on the topic, I wanted to share my random of the week, brought to you by SNL.

You know when you hear a joke and everyone around you laughs, but you realize that their laughter stems from the idea of dehumanizing your fellow man? Yeah, I know what that’s like. I grew up in the era of dead baby jokes. My baby brother died shortly after birth, when I was 6. There was never a time that I thought these jokes were funny, nor did I understand why the idea of anyone dying or being dead was something to laugh about. I went to private school, so these kids were not under-supervised kids- they were mostly the opposite of such. Still, when I asked the kids to stop, they would continue, often asking what wasn’t funny about their joke.

THIS LINK  is just another example of what’s not funny, even when everyone around you seems to laugh. This is a skit of SNL’s Stefon & Myers, and while I understand how hysterical it is to force a human into acting as an inanimate object or one that can be forced to do something inhumane… oh wait, I don’t understand. It’s not funny. It’s kind of gross. I can only imagine how many people out there are laughing at the idea of making a LP act as their fanny pack, but why? Why is mocking another human, and treating them like an object humor? I ask all of you this week to reflect upon what is satire and what is downright wrong. Trade places with another group of people… say someone who is African American being used as a pack carrier, or someone with autism being made fun of this way. You might bite your tongue before you laugh, if you laugh at all. I asked my friend about this. I could hear his bitter smile through the phone as he said, “The ACLU would be all over SNL before the skit ended if the black man was used in a joke as a pack mule to clubbers.”

I’m not asking for much… just some respect for your fellow man or woman. I guess that wasn’t so “random” after all.

Silver Linings Playbook… not only does it feature my amazing Philly, the gorgeous GA grad Mr. Cooper and my angry-face muse, De Niro, but it shows the hard lives people battle everyday as a result of mental illness. While the end is pretty feel good, in terms of how real life happens, and how people (generally) have to gingerly handle their daily lives for the remainder of them- it is a movie I will be suggesting to everyone. Not everything is easy in this life- let’s bring some awareness and love. Respect, mindfulness, and tolerance to things we may not understand, but certainly have the ability to accept. I hope that random  is a bit more palatable for you. :) Thank you for reading! I hope you have a beautiful week, Reader!

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Marvelous Monday!

Oh my! What a weekend!

We had our sleep study… but I will write more about that later. For now I will begin for what I am thankful for:
Bic White-Out ecolutions… I know it sounds crazy and no, this isn’t a review. The thing is, I love making lists, and my mild OCD kicks in while writing said lists and often, if a mistake is made, I can’t just cross it out- I need to make a whole new list. Not only is this wasteful, it’s time consuming. For that reason, I’ve always loved whiteout. However, with a baby and no time to wait for things to dry, the nasty smell and when you write over the original liquid Whiteout it gets all lumpy (which sometimes means I need to throw the list away anyway, because it’s not neat)… You get my drift. The ecolutions formula is for me! Silly? Perhaps. But give it a whirl! Just one swipe over a mistake and you can write over the smooth surface immediately!

My information about dwarfism is simple, and not specific to dwarfism at all… treat others as you would like your child to be treated. So many people don’t care about themselves as they do for their children. We expect so little of our peers, but want so much to protect our young. A child is a child, no matter how different. You and I? We are there to lead those children to a life better than our own- not one of greater wealth or glory, but for the betterment of society. To leave this world better than when we entered. To enrich lives and teach those to pass on the virtues of kindness and nobility. To be leaders and followers. To be proactive and teach with a gentle, yet sure, hand. We are here to prove the phrases You’re never too old to learn and You learn something new everyday. Teach and be taught. Thank you for joining me in this journey.

Lastly, my random. Fitness is NOT something I (or my scale) take lightly. I love treating my body as my temple… including treating my body to the wine every goddess deserves. I have been following the amazing Girl Gone Healthy, and while I could not fathom doing a 45 minute plank with her last challenge, I ask you all to join me this month during the March Ab Challenge! Tera of GGH, is an amazing woman, wife, mom and blogger who doesn’t just preach at you, she preaches with you! Losing over 100 pounds and now on a journey to stay fit- follow her blog and FB pages (linked above) for technique, motivation and for the facts! You will know what to do everyday to better yourself. Think you can’t do it? I challenge you. You can follow tags:  March ab challenge #girlgonehealthy #gghmarch #core #challenge #getafterit #fitfluential #proof #push #arms #legs #squats @girlgonehealthy… or you can join those tags ;)

Your new month!

Your new month!

I need a pedi!

I need a pedi!

Plank this!

Plank this!

Will you join me for Day 4?

Will you join me for Day 4?

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