Tag Archives: Rhode Island

Preparing…

I receive emails every week asking me questions about dwarfism, Addie, diagnosis, signs, etc. I got the following email (personal information removed for privacy) and wanted to share it with you in case you (or someone you know) have questions about a recent diagnosis:

First off your daughter is ABSOLUTELY BEAUTIFUL!!! I am 22 weeks pregnant with my first child and my husband and I were told at our 18 week doctor visit that our daughter most likely has a form of skeletal dysplasia. After sending us to the Children’s Hospital and doing ultrasounds and a CT scan they narrowed it down to achondroplasia. Although they won’t say 100% or not if she has it because we opted out of doing the amnio since she didn’t have any other chromosome disorders. When were you told or diagnosed that your daughter had achon? We are just worried and scared and don’t know where to begin since neither side has a history of skeletal dysplasia. We go back to the doctor April 23rd and will hopefully learn more then, but I am wondering if you could give me any advice or suggestions on what to do to help prepare for a child with achondroplasia. I have read that achon children will have problems with sleep apnea. Also I have read that it is advised not to put your child in a bouncy seat or swing. I am wondering what I should register for at our baby shower. I appreciate any help you can give me. Thanks in advance for taking time to read my email.

I responded:

Hey (name)! Congratulations on your pregnancy! You’re halfway there- are you excited?

Thank you for checking out the blog- and Addie <3 She’s the light of our lives and also our first baby. We have no history of skeletal dysplasia in our family, so we were surprised- We didn’t learn about Addie’s diagnosis until she was about 9 1/2 weeks. Addie was born average size (18inches and 7lb,7oz) with no bossing of the forehead or noticeable trident in the fingers (where the 4th and middle fingers split). 80% of the time, children with achondroplasia are born to AH (average height) parents and have AH siblings, etc. There is a whole numbers-based system I could lay on you about that- but truly, it’s not important now. After her birth, a genetics counselor will speak with you and you will have many opportunities in life to go over that. For now… let’s talk baby gear!!!

We didn’t know about Addie being “achon”, so we had some things that we had to return, or re-gift… clothes being a BIG issue. Personally, I suggest keeping ALL tags on clothes- bringing one NB and one Preemie outfit for going home from  the hospital (Addie was in NB and it was huge on her), and keep receipts for everything. Besides that, there are certain things that should not be used due to spinal issues like:

Bumbo Seats, or similar designs. Our babies have spinal differences, and should not be propped up to sit. For this reason, some milestones will be slightly delayed (See CHARTS), but do not fear. They find their way! Addie army crawls all over the house and loves to pull everything on the lower shelves down on the floor in her reign of terror :) It drives the dog crazy.
Slings shouldn’t be used because there isn’t spinal support. I believe we CAN babywear our LP babies, but we have to make changes to each product to provide support and make sure the head and neck are supported.
Umbrella strollers don’t offer support to the spine.. I will make my only stroller recommendation below.
Bouncers, swings, sling seats, jumpers (clips onto the moulding in a doorway)- HARD BACKED items are mostly ok, you just want to make sure that there is plenty of back support! Addie likes being in an exersaucer, but not until she was well over 3 months and it has to be on the lowest setting (make sure it’s adjustable) so her feet touch, as the legs should never be hanging as it’s bad for the hips. The stability is good in the saucer FOR ADDIE (but not all achon babies have the core muscles to be in one and can damage their spines- TALK TO YOUR DOC FIRST), but jumpers that give leeway to movement can be a lot for their legs and back to control and cause spinal injury.
Preparing for a baby with achon, is just like preparing for any other baby (although if we had known prior to her birth, I  would have looked into NOT getting lots of clothes and certain baby things). All your little one will need is love. Some kids that are said to have dwarfism, are just little at birth. Some do end up with a type. Without amnio, you won’t know for sure- BUT I would not do the amnio, either! If you can, research doctors- and make sure you speak with your chosen pedi about the diagnosis. We see Dr. Bober for genetics (every 6 months) and Dr. MacKenzie (orthopedics) in Delaware… we also have local doctors: pedi, ENT, audiology, neuro (for sleep studies), etc. Early intervention is state run and you will, with a dwarfism diagnosis, qualify for services- there is NO need for therapy right off the bat. We use EI for the pool and some sign language classes as Addie had some initial fluid in her ears and hearing loss- but the PT does not touch Addie- she just monitors her. As I said, our babies are a bit behind AH kids in their motor skills, but they get there and they do it their own way.
As far as your registry goes… people will give  you clothes, no matter what- so I chose not to register  for any except for the very few outfits I wanted Addie to have for sure. Some items we LOVE: Rock n Play (perfect for sleeping next to you in the room- allows for slightly elevated sleep if there is a breathing issues, Graco Blossom highchair, Mia Moda Facile Stroller (THE ONLY UMBRELLA STROLLER I WOULD EVER RECOMMEND FOR OUR BABIES- there  is a crossing ‘X’ at the back, and an adjustable foot rest- it provides the best back support I’ve seen in any stroller)- NO UMBRELLA STROLLER SHOULD BE USED PRIOR TO SPEAKING WITH YOUR DOCTOR, lots of small toys- I love the Green Toys teether, and the Angel Care monitor- Addie sets hers off sometimes- it’s been helpful to tell when she’s having a particularly tough night in the breathing department, and a good way for tummy time- which is crucial for a strong neck and back. For you… the Mombo Pillow! I used it for feedings and to help Addie now when she’s sitting up in case she goes backward!

This is A LOT of information. I am here to answer any questions you may have and I am honored to do so. Please let me know how your appointment goes in a few weeks, and let me know how this is all settling with you before then!!

~ Chelley

*Legality clause*
I am NOT a doctor and all medical questions should be directed to a medical professional. I will tell you what Addie’s doctors have told me, however, in an attempt to help educate and offer other opinions.
I want to add that while many achon children do have apnea, many do not. A sleep study should be done early on, and yearly for monitoring under the care of a neurologist who is familiar with the differences an achon baby has.  -My apologies for forgetting to add this to my original email!
Addie has had two studies done and had much improvement in her second- leading us to yearly studies and not half yearly! You can read more about them: ALL BLOGS WHERE I TALK ABOUT SLEEP STUDY  Hope to hear from you soon!
And that is that! I hope that this information is helpful!

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Filed under #educate, Achondroplasia, Parenting

Marvelous Monday!

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

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

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

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

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

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

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

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

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

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

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Happy Monday to you, Reader!!!

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Filed under General

The week of One Months

I just posted about a conflicting celebration of one month HERE- rejoicing the making of history and mourning the loss of innocence. Here I am again, with a less discordant post: My baby has been a year for a month.

In that month she has moved mountains in her own way… including physical ones that seemed forever in the making. Addie can sit up. Feel free to clap for her as you read this- every time she finds herself seated squarely on her bum, she claps too. Saturday, the day after THE ACCIDENT, I looked over to see what she was playing with, and there she was. Upright. Shocked, I yelled for Dave in the next room. As she sprawled back out on her belly and made her way to him, she landed in the doorway of our bedroom, looked over her shoulder, pushed herself up onto her feet, through her arms (and their 15% bend) all the way onto her butt. She looked over again to see our mouths hanging open. The day after the accident I felt like I’d aged 100 years and Addie was proving that no one would stop her progression.

In this month she’s also decided that she’s pretty much done with the bottle, but will ask for milk with sign language. She drinks water from her cup like it’s going out of style. Everything that can be held up to her ear is a phone and she must say “hi” into it, including sun glasses. If it can be put on her head, she will try- life is made up of wearing many hats, after all. My father-in-law blew her a kiss one afternoon… she blew one back. We’ve never blown kisses before, so I have no idea where that came from. When we leave the house, she waves at everything. If there is a man with a beard, she must grin at him and turn her head away. She loves to brush her hair. She begs to get down from my arms and walk holding onto my hands (OUCH! on my back and heart). When music is on, you can bet she’s dancing. She loves to pat people on their back when giving hugs. “Uuuummm” means she’s hungry… and you don’t want to mess with a hungry baby.


Since turning 1, Addie has become a toddler. She’s no longer a baby, although she will always be my baby. Every time I come to the computer I scroll through pictures from when she was born, her firsts, the holidays… and I always land on one of my favorite photos ever:

@Dimery Photography

@Dimery Photography

When Michelle Dimery, of Dimery Photography, mentioned cake smash I was jumping up and down. Not only was she Addie’s newborn photographer, she was once a bride of mine and has become a Mommy Mentor for me as I watch her grow as a mother of 2.

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At Addie’s smash, Michelle (and her beautiful and talented office manager, Courtney), were building the background to the smash: A Chicka Chicka Boom Boom extravaganza with coconut trees and the banner that Lisa from Heavenly Things for Angels on Earth made us. It was a clean and simple set- perfect for Miss Addie to eat cake on! Michelle’s new studio is a wide open space filled with handcrafted props, and beautifully designed by herself and her husband (a master of carpentry). With Addie outfitted in the diaper cover I made, Michelle took over 50 photos that melted my heart.

Cake Smash Collage

After the smash, Michelle helped me wash Addie off and filled a beautiful bucket with soap and water and she took pictures of her bath, like my favorite above. Addie stood up (holding onto the sides) by herself for the first time in that bucket… we were both so shocked neither one of us got a pic! The looks that Michelle captures always amaze me. I know the way a mother looks at a child is not a fleeting moment- they might be “easier” to find… but the way a child looks at a parent- the loving, mischievous, down-right confused looks. Those are fleeting. I was dancing around trying to make Addie laugh and she was just looking at me like I was crazy, her face a beard of bubbles. I will never forget this photo shoot and I am so blessed to have these memories of Addie’s first year coming to a close and beginning a whole new chapter of our lives.

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If you’re interested in the best newborn photographer, Dimery Photography, please contact them at: 401-580-0947 or DimeryPhotography@gmail.com

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Filed under Family Life, Reviews

Boston, this one’s for you

It’s been a month. A month since the terror ripped The City to the North apart. A month since murders, manhunts, city-wide panic, families locked in their homes, children kept from school, businesses closed and roads unused to free-up police. It’s been a month. And we remain Boston Strong.

Boston StrongCollage

With the Bruins making a comeback that will go down in history- I can’t help but think what I will remember more than explosions, the cover of Sports Illustrated, a play-off game that brought a city back from such sadness… I will remember John and Juli.

Below are their accounts directly after the race… I know there are still so many feelings running through the athletes- as with all of the Boston 2013 runners. Rather than let Boston be remembered as That Day, I want to preserve and celebrate it as the day history was made! Thank you to John and Juli for returning to Boston and finishing the race, and the beautiful medal-ing Owen did for his dad- It’s a moment that watching in the VIDEO brings tears to my eyes every time (how blessed we are with technology that we can all share it).

 

Boston Marathon
by Juli Windsor

Overwhelmed with sadness and heartbroken for those who lost loved ones today. I was only half a mile from the finish line, looking at a 4:30:00 finishing time, when I was stopped and told the race was canceled. There was confusion among the crowds and disbelief after hearing bombs had gone off at the finishing line. My heart dropped, knowing Blake, my mom, and mother-in-law were all at the finish line. Phone lines were down, so my attempt to call from a stranger’s phone was all in vain. All I could do was pray. I thought one of the most exciting days of my life was about to turn into one of the worst.

Thankfully, my family had crossed from the other side of the street from where the second bomb went off after I told them earlier that morning that I run on the right side of the road. Had I not said that, they would have been in front of one of the explosions. My initial goal was 4:15:00… had I not had trouble with the hills, I could have also been affected. My mom incurred some minor injuries and bruising from being pushed down in the crowds, but is otherwise fine. Overall, we’re just thankful.

When all this happened, I ran back to John Young who I knew was less than a mile behind me. John Young, I really am so thankful you were there and it provided so much comfort to be with someone I knew. We may not have crossed the finish line, but we achieved something today.

Pray for the families who lost loved ones and those who were injured. I’m so proud of Natalie Stavas for stepping in at the scene and providing CPR literally right after running a marathon. You never stop amazing me.

Blake, I don’t think I could have handled anything happening to you today. It’s difficult to even imagine. All I can do is sing praise for God’s protection.

By John Young

The Boston Marathon was the most surreal race of my life. THOUSANDS cheering me for MILES AND MILES. My goal was not a medal or even to finish. My goal was to have people realize that you can do ANYTHING you want no matter what body you have. I feel both Juli and I succeeded in doing that 100 times over. By the way, she is FAST and passed me with about 2 miles to go, leaving 100 minutes AFTER I did. But to run for almost 6 hours and listen to people cheer me on, is an experience I will never forget. Don’t feel sorry I did not finish, be HAPPY I started. Running (maybe walking a bit) up “Heartbreak Hill” I heard a young boy say, “Dad look at the little man running”, to which the father calmly stated, “He’s going to be one of the first dwarfs to run the Boston Marathon”. That’s all I needed to hear. Please don’t forget to pray for the families of the dead and injured.

 

Photos from Charlie Abrahams, Boston Globe, and other sources

Photos from Charlie Abrahams, Boston Globe, and other sources

Reliving these moments with John and Juli brings me, as a parent of a child with dwarfism, more confidence that she can do anything she wants and that we can share my love of sports together! We’re celebrating with you, John, Juli and Boston!

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Filed under #educate, Community, Making Changes

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.

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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.

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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.

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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.

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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.

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Filed under Marvelous Monday

Safety Message

As I prepare for my first race since August 2011, I am getting all the usual emails: packet pick up, race day information and guidelines- the usual. I also got a Safety Message to Runners.

I was immediately sad. I’ve never gotten an email like this- there were ones that reminded me to hydrate, to use the specified gear bag, and to have fun. This email was business- it made running something less freeing.

I am trying to shake it off. I will run. I will have fun. I won’t let anyone take running away from me.

Because I know many people will be at the races this weekend, I wanted to post the information so you have it, too.  Race hard, running family!

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Pretty Neat

There are lot of things we worry about as parents everyday… when you have a child with a difference or special needs, there are other things beyond the usual suspects that wrack our brains, pull on our heart strings and force us into some sort of judgement about ourselves that we don’t deserve, but can’t help but endure. Then there are those things about our child’s difference that make us joyful.

I have a friend with a young son who is autistic. He doesn’t like to be hugged or make eye contact, he will touch fingers with you but not shake your hand or give you a high-five… but he can play almost any piece on the piano if he has the music in front of him, without practice, perfectly. On the days when everything seems to be falling apart, my friend points to the grand piano she got at an estate sale 4 years ago, and her son plays her soul into a calm state. We don’t get to talk much- she is in Arizona with 3 kids- but when I see a picture that she (rarely) posts, it brings me so much joy to see what the lens captures. Her kids in the sand, playing at the zoo, first days of school, last days of summer, and solo concerts from her only musical child, consisting of everything from Billy Joel to Bach.

In fact she just posted one of the pics yesterday. It made me think… even though I have a few hard days, there are A LOT of things that bring me back to center… and most of them are not Earth-shattering, they’re the little things that can go overlooked if I don’t slow down a bit and take them in.

On the days where I cannot seem to get a hold of anyone to explain a bill, or what a certain test revealed, they seem endless and unrewarding- except for the child I perform these tasks for… but most days, I feel so blessed to have such a joyful baby. Playgrounds are still not the best thing for us: skinned knees on wood chips that are, sadly, not edible, and the lack of small toys makes most trips, truthfully, not fun. Most “play zones” are geared to younger kids who don’t have many motor skills, or older kids who do… not the older kids who just don’t have it, yet- Addie gets frustrated and trampled, so we stay away from those places, too. We play in parks, in the grass with toys. We climb over rolling hills and make our way to random swing sets. And, one of the neatest things I’ve experienced as a mom so far: we do all of these things in last year’s wardrobe.

SameOutfit

Some days are really hard- no matter who your child is- and it’s nice to remember it’s the trivial things in life that can bring us the most happiness, the biggest belly laughs and the deepest sighs of relief. When I can’t see much through the clouds in my head, I can see this: Addie is growing, making leaps and bounds, and showing us all: She is fierce (and adorable)!

AddieRINewMomsConnection

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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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Love Thyself

As a friend of mine stared at my recent status updates, she emailed me: Bitch.

WHAT?! I replied.

You’re running again! You don’t need to.

…the conversation continued. Mostly about our bodies and how she “hates” her post-baby figure. I turned it, briefly, to running- I do need to. I don’t run for the awesome legs, sun-kissed nose or black toenails. I run because my sanity depends on it. To sum it up: I was a high-risk pregnancy- partially due to miscarriage and partially because of surgeries I’d had. This left me sidelined during 32 weeks of my pregnancy (I ran my last half marathon just a few weeks pregnant… that would explain the intense exhaustion I felt after). All during Addie’s gestation, I worked 60+ hours a week- sure we needed the money, but more-s0, I needed to take up my time. I often stayed late, finishing projects just to avoid seeing my Asics waiting for me at home. At 20 weeks I was rear-ended on my way to work, and that set my back into a spiral. Up until that point, I’d had NO pregnancy pain… from that point on it was pain all the time. I explained all this to my friend and more… I ended it by telling her to take a walk, by herself, with music that she likes, or in a new place. As she goes along, run for a minute, jog, walk- do it for 30 minutes. Tell me you don’t feel better. Running isn’t for everyone, but a family walk that incorporates a jog, a good walk/run routine, or just a brisk walk on your lunch break- if not for your thighs, for YOU- can make a world of difference in your attitude.

So, yes. I do need to run.

Besides that… when I look at my belly now (one year postpartum), I’m not overwhelmed with joy. I have never been a skinny girl. Thin, yes. But I was made to run up and down a field, wielding a stick of composite wood or alloy and leather strings. I was made to run through those skinny girls with my kilt flying high, showing off the spandex shorts beneath. My cleats sounding like a 100 horses, as I slam my feet into the ground. Sometimes I forget that.

Senior Year, lacrosse

Senior Year, lacrosse

Early on in my pregnancy, I went home for my sister’s baby shower. She weighed herself on the super-accurate scale my parents have. When the number popped up, I forgot about everything I just said above. I was so angry at myself for being so big. My sister, at 7 months pregnant weighed what I did before I got pregnant. We are the same height (give or take half an inch)… we are not the same build, and you guessed it: she’s the pretty one. She is blonde haired and blue eyed. She’s thin with lean muscle- not paltry. She’s strong with a long face and a big smile and beautiful skin. I am muscular, and when I’m not in shape, I look round, bulky, dimply. My calves are huge from a decade of dance and gymnastics. My shoulders are broad- good for being a hockey goalie. My face is round and my blue eyes shine from behind long lashes and a shock of dark hair. I have my Mom’s face and my Dad’s body… my sister is the opposite parental combination.

It was then, as she stepped off the scale, I began to take belly pictures.

Through the years I’ve had an obsession with my middle. My legs are always questionable. I wish they were leaner… even with all the abuse I put my knees through, they still carry me… but my belly has always been toned (not well defined, just flat)- until I had a baby.

My belly when we decided to conceive, age 27. Me at 21, after being tattooed and me at 25 on our honeymoon.

My belly when we decided to conceive, age 27. Me at 21, after being tattooed and me at 25 on our honeymoon… And a week post-Addie.

So, I write all that to share with you my mantra and what I try to remind myself of daily: “You are beautiful.”
[Now, you SAY IT: "I AM BEAUTIFUL"]
I remind myself… You gave birth to a beautiful baby girl a year ago… it’s not easy to take care of yourself with daily life, let alone when you have a baby. The house is always clean, the dog always walked and fed, the baby clean and smiling. The cabinets are organized and you’re up-to-date on your work. All appointments have been made and kept, the correct paperwork is filled out and sent. All phone calls are in and logged (fighting insurance companies is a full-time job). It goes on from there.
Give yourself a break and love it.

I’m a bit softer… but every extra pound, every little stretch mark… that’s Addie. Sure I’m down a few pounds from pre-baby… but it’s not the same. It being my body. My limbs feel heavier, my butt a little wider, my arms rub as I trudge up another hill in the park. What hasn’t changed is the rush, the surge, the high I get from logging miles. It’s not easy to get out there, but once you’re on the road- it’s hard to stop.

Let’s love our bodies, ladies everyone! Those 20 minutes you think are not going to make a difference, will make a heck of a difference compared to 0 minutes. Get out there and do it. Walk, jog, run, play catch, skip with your kids, play flag football with friends. Get active. Get healthy. And love yourself, love your mind, love your body.

I hope (when we’re ready) I carry just like I did with Addie- (all in the front):

Large photo: Exalt Photography Back and side pic: 37 weeks

Large photo: Exalt Photography, ~31 weeks
Side and back pictures: 37 weeks

For now, my middle is soft but my mind is strong. Run for sanity- reap the benefits of body:

Momma Belly

Momma Belly, May 2013

I hope you know how beautiful you are.

It is so hard to love yourself, especially when we have SO many pictures of our youth reminding us of the times when nothing jiggled! It’s a different love. I think of my pre-baby body as my first love, but as I evolved into wife and then motherhood, it’s a more mature love. A respect for what I’ve done in life and all I have yet to do.

Maybe someday I’ll love myself without trying, but until then… I repeat my mantra in anything but a full-length mirror!

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Mother’s Day Giveaway

Last night, around mile 4 of 5 1/2, I decided that I would whip out some of my new soaps- which I received in return for this review- and try them out. Sensational Showers, a small local business, gave me three items to try: Oat Face Bar, Oatmeal Scrubby and Herbal Face Soap. As I ran the hot water in the shower, I lathered up the Oat Face Bar and washed the sweat off my face and neck, peeled myself out of my tech-gear and unwrapped my other items.

Sensational Showers samples

Woah! Instantly, my face felt refreshed and the skin was so soft- exfoliated without leaving my skin red or irritated.

In the shower, I used the Oatmeal Scrubby bar- which totally relaxed my muscles as the finely chopped oatmeal gently exfoliated my overrun limbs- there are two sides to the bar! One gives a small lather, the other gentle (yet effective) exfoliation. As my hot water was coming to an end, I washed my face and neck with the Herbal Face Bar and was transported (in my head) to a spa! Not only was the lather soft and delicious, it left my senses tingling. If the cold water hadn’t finally come spurting at me from the shower head, I might have stayed in my spa fantasy all night!

After getting out of the shower, my skin was so soft I didn’t have to put lotion on right away- unlike when I use regular soap and my skin feels tight and itchy after being under the hot water. Bonus? My bathroom smelled so clean- not a chemical fragrance smell, but like summer.

Each product is handmade with all natural ingredients and safe to use daily. The packaging is Earth-friendly, the prices wallet-friendly and supporting a local company (Providence, RI) always brings me a smile… making these products some of my favorites- not just for personal use, but for custom party favors, too! Owner Stacy will work with you on scents and products that suit what you want, whether for you or someone else!

It’s not often that I take the extra time to run the hot water cold, but using Sensational Showers’ products are a quick way to give yourself some pampering that will leave your skin and spirit more refreshed! My idea for you (*hint* *hint*): request a Mother’s Day basket! Try out the new lip scrub, shea whip, mocha madness scrub bar- or enter to win these items below!

Sensational Showers

a Rafflecopter giveaway

*I received product samples for my review. As always, views are my own and are not swayed by outside opinions.*

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