First Letter

So… There are so many times I find myself wanting to tell Addie things- or to write her a letter, but I know I will lose it in a move, or it will fade and wither. So, I started a new category that I hope to utilize from time-to-time to write letters, notes, etc. to Addie. Something she will always have and can look back on- like her baby book. Here I go…

Dear Adelaide,

Tonight Daddy left for a last minute business trip to the UK. It sounds more glamorous than it is, trust me. As you finished your milk, you looked at me, mouth covered in sticky drool, and smiled. Your two white teeth stared at me from the bottom of your gums. It was like you knew what I needed at just that moment.
I lifted you from your back and burped you- which, in true Addie style, you did in my face- followed by some pterodactyl screeches sounding somewhat like dadadadadadada. I asked you for a hug and pat, pat, pats. You collapsed into me and patted my shoulder.

You, dearest girl, are why Mommy was born into this world. I never knew how much Mima loved me until I held you, and somehow my love for you grows stronger every minute. I feel like I might explode sometimes. There are nights I go to bed and stare at the monitor, your little bum in the air and head turned to the right, and I cry. I don’t know why- I’ve never been much of a crier, but you just bring me to my knees.

These next 5 days and 4 nights might be miserable as I toss and turn wishing I could roll into Daddy’s arms and snuggle to sleep, but I know that I have my girl to snuggle with in the mornings and during nap time, and that we have a lot to look forward to this week!

For starters, your first PODS class is Wednesday! And your first Easter is this coming weekend. Today, Miss Lynette (owner of Exalt Photography) asked us to come model for her (mostly you as you’re the most beautiful!). You got to meet your first real bunny and you were so brave- giving him pat, pat, pats and playing with his ears. I’m so proud to be your Mom, sweet girl. You don’t just wow me, but everyone who meets you falls in love with you. Your energy is intoxicating and your smile and always happy demeanor mesmerizes anyone who has ever been near you.

This first year is coming to a close, and there will be seconds and thirds, tenths and sixteenths in our lives- I will cherish each one. Because you give your all, I will give mine.

I love you, beautiful. I always will,

Mom

How Naive!

Scouring through bags of hand-me-downs, I am looking for pants without the cutsie details, or just buttons. I can sew buttons back on the hem- a cute detail. Am I thankful for hand-me-downs? YES! I have been able to make matches out of things you could not even imagine, and I’ve passed on so much to moms at our church and my in-law’s church. But the thing about clothes is… I’m naïve.

In fact, I’m so naïve, that when I went to the store the other day, I saw a matching outfit that had the cutest shorts and top options that I tried them on Addie. I picked up the shorts knowing they would fit, and the top knowing it would not. I knew there was no way Addie’s head would fit through the opening. But I tried. I failed. I cried in the bathroom of Carter’s. As I walked out to hang the items back up (a routine I’ve grown accustomed to), I noticed that the toddler versions of these outfits were tank tops. What the heck!? If they had tanks in smaller sizes, the head opening would fit my girl! I was bummed. As I hung up each piece, the woman working asked me how they were. “The head,” I announced. She was familiar with my heartache and well-versed in our clothing struggles, so she just gave me a knowing smile. I felt better.

With all of my research, how am I still SO gullible? I have no idea. Here’s how I stumbled upon my my recent shortcoming: Addie’s birthday bag.

A birthday bag? Yep. I’m an all-year-’round shopper. We don’t get large sums of money as a bonus or otherwise acquired cash at any time of the year, so I’ve adapted and purchase things when I see them, if I see them for a good price. In this manner, I created a birthday bag for Addie. I’ve been putting books, toddler toys, a dish set, and clothes in as I come upon them, and thus far- she’s set to have a wonderful first birthday with most of her summer wardrobe and some new reads. What I didn’t expect, as I rifled through the “loot” Dave and I have gotten over the last year, are the clothes I was so clueless about.

When Addie was diagnosed, I was concerned about her clothes. Sure, it was the LAST thing that went through my mind, but as I dressed her in the same newborn outfit week after week, I wondered: could I return what we had in her closet? The answer, in some cases, was yes. I was blessed to have met some of the most amazing people at our local Carter’s Store in Garden City.  I truly adore the employees of that location who helped me return and try different things on Addie until we found what worked. However, some of what worked in my head didn’t translate to real life. As so much of this first 12 months of Adelaide’s life has not.

As I pulled out different outfits from our birthday bag, I was pleased. I had made these purchases with multiple discounts, coupons and reward dollars shared by my Mom. They were all 0-3 month shorts, 3 month pants, 3-6 month onesies… then they weren’t. In the bottom of the bag laid an un-bagged layer of clothes.

I picked each piece up. I remembered the day I had gotten them. Dave and I went to Khol’s after Addie was diagnosed- maybe only a week or so after- to exchange something. While we were there, we wandered the store a bit. Being summer, there were sales going on, and we made our way over to the children’s clothes. What we saw seemed like the Holy Grail: three shelves of capri pants! After going through all the colors, I settled on just one pair of capri jeggings and one in black, in 9 and 12 month respectively. From the bag, I pulled out those pants, as well as the 12-month owl shirt (WITH buttons, thank God), and slid them into a bag of their own to be gifted at a [much] later date.

Addie, at 11 months, wears newborn or 3 months- and the 3 months are for her hips and require cuffing.

Then, there was the outfit I’d dreamed of.

It sounds SO silly to parents who have kids that can wear those whimsical t-shirts and pants right off the rack, but to me, I was heartbroken when I saw these two pieces. I knew that the beautiful head I kissed every night would never fit through this t-shirt, and the pants… 12 months? As I mentioned, the biggest pants she wears right now are 3 months. Thankfully, I saved the receipts and Carter’s, as usual, was wonderful to me. But, as I searched for new pieces I came across my new conundrum: Some onesies with buttons are not made of a forgiving fabric. This means that though there are buttons that seem to widen the head opening, they do not stretch, thus they will not fit without struggle (resulting in tears) over Addie’s head.

I’ve learned a lot about sewing this year, and some of what I’ve learned includes the harsh reality: some items are not made to be altered. Inexpensive, single layer fabrics can be more work than they’re worth, and I choose to spend my days with Addie, not just sewing for her. This reality makes it hard to find matching outfits, but my beautiful girl in just her diaper is perfect for us!

So… When it came to clothes, I was  am [still] a bit naïve. I truly believed that I could just shorten 12 month clothes when she was 12 months, because upon diagnosis, I didn’t know what dwarfism meant; almost like I had to see what the internet said before I could believe it (a sentiment I think more people should consider before agreeing with everything that WWW has to say). I hope that as I become more familiar with my Brother Sewing Machine, I will be able to alter more items, but until then… I shall scrutinize everything I bring home, and I will never forget the days I thought I knew better!

As a closing to this post, I want to disclose something I am (and might forever be) insecure about. I added Addie’s wishlist to her birthday invitations. I will tell you, Reader, that I was torn when I made this decision. I felt like I was asking for gifts, when in truth, I want people to know that she doesn’t need anything. There are so many times that I feel personal disappointment in myself. Addie has some amazing friends who have gifted her some of the most beautiful dresses I’ve ever seen. Designer jeans, and name brand sneakers. But she will never wear them.

In my wording on the back of her invite, I stated …due to Addie’s “little” differences. It’s true, Addie’s differences are just in size, but her difference is forever. She can’t reach most water-tables that many friends have at their homes and want Addie to have, too. She can’t wear any shoe that’s even remotely narrow, beautiful clothes from small boutiques collect dust- always plaguing my mind for a chance to be worn just once. But Addie isn’t in those sizes yet, or her body shape (the same small waist and larger hips I grew up with- just on  a grander smaller scale) doesn’t allow for a certain style to fit her. I keep the things that cannot be exchanged because Addie might be able to wear these things one day, and if not, maybe a sister or cousin can. I made the final decision to add the list on Addie’s invite for my own personal reasons. Knowing that Addie won’t wear the items that people spend their money on makes me ill. The economy is killing us out there- this time in our country is a war. It’s a battle everyday to pay bills, and I know that. I want Addie’s friends to come and play, for parents to have a glass of wine and watch our babies interact so innocently, as this is the only time in life they will be truly innocent. If someone wants to bring a gift- I want them to know that we will cherish, use and love them all the same for that purchase. I would be disheartened to see something I gave someone in the box or with tags months later. That’s why mom always made us wear that sweater grandma knitted (you know the one that hideous holiday sweater parties are based on). People put hard work into choosing a gift, and now more than ever, we have to put in more work to be able to afford such a gift. I thank everyone for their support… your gift is your reading, spreading awareness, educating and for loving Addie- all 24 1/2 inches of beautiful (almost one!) baby that she is.

I thank everyone for reading about Addie, educating yourselves about dwarfism and understanding that being a mom, no matter how many blaze the trail before you, is always an uncharted territory left for one lone woman to traverse.

Listen to me roar!

This past weekend I was blessed to be a part of, hands down, the most empowering experience of my adult life. Listen to Your Mother auditions were this weekend… I don’t know that I nailed it, or even did well at all, but I do know that it meant more to me to just get up there and read my story in front of two of the most amazing womenbloggermoms I’ve ever had the good fortune to meet.

If you know me from college, you may remember the time freshman year I was speaking in my Honors English class. For some inane reason, I thought it was a good idea to pick my favorite poem that made me think of my Dad. I was reading Don’t Grieve For Me Now as my choice- My other favorite is Wasteland, but it’s SO long, I knew I would lose the class after line 3… I began speaking from the page in front of me, looked up, smiled, held up my index finger to signal them to wait, walked away from the podium to the glass door, picking up the wastebasket on my way out. I closed the door behind me and proceeded to vomit into the small plastic bin (thank God for trashcan liners). I pulled the bag shut, tying a knot, walked back into my classroom (where everyone looked like they had just witnessed a war), and finished reading. Complete with tears.

Suffice it to say: I am not so great at public speaking. With all the CPL (if you know what that stands for, you’ve been reading for a while) stuff going around, and news cameras and writing more frequently, I’ve become more comfortable in social situations where I don’t know many people, or anyone at all. I think my newer confidence may also have something to do with becoming a mother. It just makes one less inhibited and more able to speak up! In my 38 weeks of pregnancy and 36+ hours of labor, I had more people check out my body than one weekend in Virginia Beach in my late teens… and I looked GOOD then! Once you’ve shown it all, birthed life from your loins and actually want to do it again, I guess something inside mama says what’s next? and you better have something to offer that inner voice, before it gets too quiet. So, I let my voice rise and shouted from the roof of my mind! I wanted to share my story about learning of Addie’s dwarfism. I wanted to show people the softer side of me- the darkest moments of becoming a new mother, when your baby is in a hospital bed and there is nothing you can do… as well as the brightest moments, when your infant somehow offers you more comfort than you to her. And so, I shared an edited version of the first post on this blog called A is For Adelaide and Achondroplasia. Here is a little bit about the audition:

As I laid Addie down for her nap just moments before I had to leave for the Providence Library, I felt my stomach turn. No time to puke… I ran out the door and into the first car in the driveway- Dave’s Forrester. I pulled out into the road and was on my way. Holy crap, was all I could think.

I parked the car close to the library and put just 2 quarters in- a decision I regret- and walked into the grand building (where just weeks before I witnessed my friend, Tim, propose to his fiancée on just that corner where they shared their first kiss!!! SO ROMANTIC. And I digress). As I took the elevator to the third floor, I was repeating the mantra breathe to myself. I took the clipboard, as was noted on the sign outside the audition room, and filled out the requested information. After wringing my piece in my hands, Carla and Laura come out to get me.

I had no idea what to expect, I’d just recently learned about LTYM, and was excited that I was even chosen to read my submitted post from this blog. But their welcoming demeanor, and the fact that there was candy in the room, made it a much lighter experience. Earlier in the day I had gone on my first Team in Training run, and so I was able to resist temptation, but something about candy on the table (Angry Birds gummies?!) makes everything less formal.

I began to read. Somehow, I could not pry my eyes off the page. I was filled with self-doubt and mortified that I was telling these women, verbally confirming what I had written, that I had been scared of Addie’s diagnosis and that I was angry at myself. Then, a surge of pride ran through me- I was telling my story- a story felt by thousands who were afraid of the same things I was, and also too ashamed to share their stories. You might think that children choose their parents, as I do, but that doesn’t make the decision seamless. There are obstacles and hurdles one must maneuver and jump in order to cultivate relationships. These do not end after a certain stage in development, this is life. This is the work it takes to make a marriage flourish and parenthood so rewarding. Things don’t happen to those who do not make them happen for themselves! There is no shame in admitting that sometimes it’s hard to do it all. We ask for help, we shed a tear, we learn to love- everyday.

I tried to pull my eyes up to my audience of two, praying that they would enjoy my piece, choose me to share with my community and to not cry. My eye contact was terrible and the knock on the door threw me for a loop, but I did my best, and I cannot ask myself for more. I did not throw up, quiver, cry or make excuses of why I could not go. I think I did great! I am not a public speaker- yet- but I am just 28… I have at least 100 more years of good living in me.

I regret the 2 quarters because I could not pry myself away from Carla and Laura, and we ended up talking long enough for me to get a $25 ticket! Oops!  When I got home, Dave just smiled about it- it’s my first ticket since we bought the house (we used to get them randomly when we lived in the city)- he was so proud of me for completing my goal. When Dave hugged me, I knew I had already been chosen. Whether I read or not in the show, I’d been chosen by this man to be his wife, to mother his child(ren) and to have him stand by my side.

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?!

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.

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!

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 ❤

Have a marvelous week!!!

Using my Feet

Is anyone else having a hard time focusing? It’s hot, it’s cold, it’s warm and rainy or sunny and snowing. What is happening?! Beyond the weather driving my headaches to the breaking point and my dog to chase his tail- I am ready to battle the out of doors: FEET FIRST!

This Spring I was certain I would have a few half-marathons lined up… alas, they are both expensive and time consuming and with my milk supply already dwindling with each extra mile I push myself, I can’t risk too much training at the sake of my darling Adelaide. And so… I have banded together with some awesome people to run, walk and sit for some things that are close to my heart- literally.

The two events I have coming up mean more to me than most would understand. I speak of my father often; a man dying too young, leaving his wife and four children far too soon. I like to imagine him coaching my little brother in ice hockey up there in the big blue sky, instead of deep in the ground. What I hate to imagine more, is Addie losing her Daddy to cancer, as I lost mine. That is a story which I’m sure I will tell time and time again, as April 21^st passes every year- no matter how hard I will myself to sleep through it. What you might not know, is that my cousin Allyson will be 18 forever. After a battle with Hodgkin’s Lymphoma, she lost her life at Bowman Gray Hospital in North Carolina. That was 17 years ago. There are stories that have been told about the events after her death. How hard it was for my aunt to lose her only child, and right after her high school graduation. How everyone felt so alone- lost in their own thoughts and afraid to ask those around us if they were OK. None of us felt OK. Sometimes, we still don’t. There is much to be told about the loss of a child, but not much you want to say. We will always love you, Allyson. You and Jonathan are my guardian angels.

My baby brother and my cousin, Allyson

Fast forward a few years from tragedy. My Mom was reinventing herself. She’s always been amazing, but now she was ready to take it to a whole other level. She was ready to be a runner. She signed up with Team in Training in Philadelphia and did 26.2 miles (a full marathon!) in Disney in 2001. Yeah, she’s amazing and inspiring. So inspiring that when I saw a TnT mailer on my dining room table in 2010, I immediately checked off the box that coincided with the informational meeting I was able to attend. Hearing the past participants talk and meeting the coaching staff was amazing. Coaches I would get as a bonus for running!? Yes please! I had already run my first half- a pitiful display in Philly’s ING Rock ‘n Roll.

Worth-women running!

It was hot and I was fresh off cigarettes… and it showed. That was September 2010. I wanted my next display to be amazing! So in May of 2011 I ran the Cox Half Marathon with my new teammates. I loved every mile! I knew I would sign up for more.

The next Team event I ran was the inaugural ING Rock ‘n Roll Half Marathon in Providence. In August. Being what Rhode Island is (Hell), the weather was terrible, but it truly reflected my spirits. I had just had a miscarriage and was still feeling pretty terrible emotionally. I had not trained since the morning of July 22^, 2011 when I woke up and I wasn’t part of that longed for group of expectant moms anymore. Those weeks I had sat there, waiting for my doctor to call and tell me that there was a mistake, were just weeks I was not training. I laced up two days before the race for a short run and I was badly winded. None-the-less, I gathered up what was left of me, and put on my purple shirt for the race.

My favorite part of Team in Training is the camaraderie. There are people EVERYWHERE that yell “GO TEAM!” as you run past. You know what? They’re cheering for you! I love this sport, but more than anything, I love taking part in it as a member of TnT.

As I ran the umpteenth hill Providence threw at me, I came up on another purple shirt. He was not someone I had trained with. Chris was from another group, but he was one of my kind! We met up with each other as the hill seemed to gather all it had to keep us stationary. Suddenly, back and forth, we began to encourage each other. We made it to the plateau, and we ran the rest of the way together. Chris’ mom (insanely beautiful from her pictures and one of the most special women I’ve ever heard about) had recently passed from cancer. Chris was running for her. He was going to finish this race because he had to. We all have to do what we have to do to make it through what life hands us. I felt like I was losing my grip on happiness, so I ran. Chris had lost the most amazing woman most men ever know, so he ran. And us? We ran together. We ran though shallow breaths, each gasping for air we thought might not come. Yelling out encouragement as we passed the mile markers, we would tell the other to go ahead, but neither one budged from the other person’s side. We chose to tell each other stories of our loved ones past, and I told him I’d recently lost a pregnancy. A total stranger, Chris looked at me with his big brown eyes like he was trying to take some of the pain away for me. Running in purple led me to meet a friend I will always cherish. He may be a New Yorker and like the Rangers (lame), but this Flyers’ fan still thinks the world of him.

And that leads me to my first race post-baby: Cox 5k. How does one go from 13.1 miles to 3.1? They have a baby and take a year off. That being said, I am SO happy to be back in my purple shirt! As with every season, there is an honored patient. I am proud to run for them, but I choose to honor my own hero. She goes by the name of Belle. Please read about her HERE. I immediately broke in two when I heard she was the daughter of a fellow blogging mama right here in my (now) home state. I knew I had to lace up again to try and fight this battle to win this war- to find a cure for leukemia. And so, I will be running my 5k on May 11, 2013. I have a fundraising page HERE, but I’ve already met my goal. While I encourage everyone to keep donating- everything over the goal is just a bonus for the Leukemia and Lymphoma Society (LLS) and runners like me love over-accomplishing our goals, but I’d also like you to consider making a donation directly to Belle and her family HERE.

This past weekend I had the honor of meeting Belle. She was the first to greet me at the door of another friend’s birthday. Her beautiful face is what struck me. Hiding behind her full cheeks was a smile that swept across her face as she ran to her equally stunning mom, Melissa. At this event I got to talk with Melissa, who is both mentally and physically strong. Sometimes we say someone is strong because there isn’t a better adjective to describe their character. In this case, this woman is breathtakingly strong. Her ability to keep calm and positive, even on the bad days encourages me to tie my darn sneakers, plug  in the treadmill and spend nap time running- I can always shower later. Belle needs me to run, now.

For the next few years of Belle’s life, she will fight the ultimate war within her own body. I ask you to help me however you feel comfortable, to donate what you can to help this cause. Donate, blog about, share on social media sites. What can you do to help? Team in Training, Sit-a-Thon or check out this event the Rhody Bloggers For Good are hosting:

Lastly, my amazing blogging ladies (myself included) will be walking for the American Heart Association. So many of us women don’t remember  our tickers, and often, we are the ones who have undiagnosed heart conditions. Our team is HERE. I am so excited to participate in this event! This is our mission:

Imagine the impact if we reduce death and disability from cardiovascular diseases and stroke by 20% by 2020! Our team is joining the American Heart Association’s Heart Walk to promote physical activity to build healthier lives, free of cardiovascular diseases and stroke. Please Join Our Team! Help us reach this lifesaving goal!

Thank you for joining me in my Spring of He(alth)(lping Others)! My plate is full, but I am so thankful for each bite. Or in this case, step!

Sleep, my angel

Well that six months went by fast! All of a sudden we were back at Boston Children’s Hospital and getting our second sleep study done… where did the time go? We were supposed to be in on Friday night and out Saturday morning, but there were 6 phone calls and multiple times and dates that moved us to Saturday at 7:30pm to Sunday at 6:30am.

I was a bit more prepared for what would happen than I was last time. Read THIS if you’re wondering how it went the first time around! Well, more prepared for Addie and less so for me. I had not had dinner when we pulled out of the driveway, and I could already tell I wouldn’t last the night without food. When we got to our room at the hospital (after a seamless drive to Boston: weekend sleep study perk!), our AMAZING nurse, Kate, asked us what she could get for us. As I waved my hand and said, “Oh nothing,” she continued, “I can make you some soup if you didn’t eat yet…” My eyes lit up. She made me soup! And English muffins with butter and jam. And ginger ale.

After I gorged myself on low sodium (NOT recommended) soup and bread, it was onto wrapping up my little girl into a hooked-up mummy. The nurse we had was wonderful and told me I could hold Addie and feed her while she was getting hooked up to the sensors. If you’ve never had a sleep study before, the head is measured numerous times and marked with red. Then sensors are placed on those spots with a type of glue. Then the head is wrapped so the sensors stay in place and all the wires stemming from them are plugged into one machine that reads them all night. Then, there is a mic “glued” onto the chest, right under the chin (to record snores) and tapped there for security. There are sensors placed on the legs, ribs, chest and toe- and all the leads are pulled though the top and plugged into the same sensor box as the head leads. Over-top the pajamas goes two belts that also get plugged in and up to the box. There is a nasal cannula put in place, as well. We were SUPER lucky that our nurse was so awesome- she waited until Addie was asleep and she had gotten good information before placing it in. Addie barely woke while she did, and easily fell back to sleep without comforting. Previously, two nurses got Addie into all this gear and she was hysterical. This time around it was much more laid back and pleasant.

Barely any tears! Just an ounce of complaint, and she was fine!

After she was in her gear, we did our usual routine then off to sleep! We began with tooth brushing (she doesn’t spit yet) and then we read our usual night night book. We said our prayers and curled up with snuggle puppy. It took a bit of loving and about two minutes of cuddles and she was off to sleep. She woke up a few times during the night, but she didn’t need much help to get back to sleep- just a back pat or hand to hold or replacement of a lost bink. She was able to sleep on her belly for a while (which is how she prefers to be), and then the nurse gently rolled her to her back, where she stayed until the next morning!

Sleeping baby ❤ Snuggle Puppy

I was SO happy that I had my tablet with me- I was able to link up to the WiFi and watch (really bad) movies on Netflix. With my headphones on, I snuggled into a really restless sleep. I know I will never get any sleep myself during a study, but it’s always hard to actually go through- constant door openings, trying to not wake the baby while getting ready for bed, having to pee and not wanting to flush because of the noise, that midnight snack you can’t have because you didn’t bring, pumping without showing anything just in case you’re too close to the camera or someone comes in… it’s a hard night for the parent, too!

In truth, the sleep study is hard enough, but add to the mess the hair the next day, and you’ve got a real mess on your hands. My tips HERE are from last study, but this time, our nurse (AWESOME NURSE!) took her time and helped me wash Addie’s hair until it was almost perfectly clean- at least all the glue and red pen were out!

Before… After

As a bonus, the nurse gave us some goodies to go home with… including a spray that would help take the residual stickiness out, wipes for the tape and glue left on Addie’s skin, and 2 packets of Aveeno Oatmeal Bath to soothe after the wipes. I could not have asked for a better experience than this one if you have to have a sleep study done.

Our take-home care package!

Because Addie’s hair was wet and the hat she came to the hospital wearing was a hand-knit owl, our (once again AMAZING) nurse gave us a really cute princess one- and it was big enough to fit Addie’s head 🙂

We were finally ready to go, and Addie decided we needed a pic of just us ladies

Silly, but true, dirty hair is ALWAYS easier to put up than clean hair- this is true even for babies. After she got home, we took a nap and got into clean clothes- then it was time to experiment! Because her hair had been washed so much, I figured I would wait a day to try and clean it again and made Addie’s first pigtails instead!

If I could give you ONE piece of information and that’s all you take away from this: bring as much of your routine with you as possible. Addie was uncomfortable and annoyed, but with everything as similar to at home as possible, she acclimated very well to what had to be different due to our circumstances. For us that meant mamas milk, tooth brushing, reading Goodnight Moon, saying our prayers and getting Snuggle Puppy.

Our usual suspects

Ready for breakfast when we got home from Boston!

And that’s how you do a sleep study!

We are hoping for less sleep apnea occurrences, both central and obstructive, but when she had her tubes put in (ears), she showed signs when she was under. Not a good sign. While apnea is common among children and adults with achondroplasia, I am hoping that she will grow out of it before it gets worse. We head out to Waltham to see the doc in a few weeks for the results. I’ll keep you posted! Thanks for taking this journey with us!

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 ❤

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!

Making a splash!

Sometimes Addie and I go to Petco to see fish. You may think that’s kind of  a pathetic day-trip, but the tanks are well cared for and it’s free. Recently, however, just 20 minutes of fish watching has not been enough. Addie wants to see more, and touch the tanks. It’s adorable to see her love for sea life growing before my eyes, but the employees of our local pet shop are not thrilled at the perspective of slimy baby hands on the front of their tanks.

This is what brought me to the Biomes page on Facebook. After liking the page and following all their posts for weeks, I asked a few of my girls if they wanted to take a trip with me to check it out! On a cold day earlier this week, we bundled our babies up and headed to the North Kingstown gem!

Thank you, Nikki, for snapping these pics!

My girl ❤

A location with easy access, Biomes is situated on the busy Post Road. There was plenty of parking and it’s all close to the door- perfect for this rainy day! We went in and were greeted at the desk, located to the left. Once introduced, we began our 2 1/2 hours to the right of the building- with Darwin, the tortoise. He is in a low, wooden tank- perfect for kids to pet his shell or just peer over the edge to see him. He’s pretty cool- for us old people, too 🙂

We moved on to some awesome tanks, including sea horses… which are my favorite!

The venue is small, and one-level, and the scenery is simple and casual. There are no fancy signs or digital displays- just beautiful sea life and lots of it! As we walked through to each tank, Addie began to get hungry.  As she was sitting looking at a tank, she pulled her bottle from my hands and laid back into me. I let her lay down and drink… no one seemed to mind. It can be so hard to hold a growing, curious baby- I was so glad that no one gave us heat for this… plus, she was really cute! The scenery around her actually helped her finish faster than usual!

When she was done, we headed over to one of the many hands-on tanks. Addie loved reaching in the water and got to touch (briefly) a shark! Above,  she is attempting to get her hands on a horseshoe crab. There was even a tank of baby horseshoe crabs- so cute!

There were a lot of larger tanks for the kids to look into, and they are perfect for smaller and taller kids- makes the trip worth it for families of all ages and size.

I was shocked when I looked down at my watch and realized that we had been there for 2 hours! When we walked in the place seemed so small, but there is truly so much to see, it’s easy to get lost (mentally) in all the tanks and even in watching the wonderment of your children as they observe a whole other world.

Before we went to leave, my ladies and I noticed a white picket fence area full of toys (mostly ocean-theme) for kids to play with! Excitedly, we walked towards the space, filled with options for younger and older kids. I scooped up Addie and went to change her diaper before we got down to play. I have to mention this, because it’s not common for me to find… The facilities were CLEAN- not just acceptable, but clean. The changing table is new and they have disposable liners to put down underneath your wiggly one while you freshen his or her bum. And then, we got down to play! Our babes seemed more interested in playing and drooling on tanks, so we didn’t go to story/craft time, but I suggest you check out THIS page to learn more about them- both of which are held in this same play space!

Biomes is an AWESOME place for us to all meet up and have a fun afternoon out of the cold and rain. The babies loved it AND their admission was free (kids and adults over 3 are $9). There is a family membership for just $100 a year, which I think would be awesome to have (gift idea for those of you that shop for Christmas in July!). Their hours are Sunday 10am to 5pm and Monday-Friday noon to 5pm. It’s a perfect place for parents to meet up and let the kids enjoy learning in a hands-on environment and an open space (can’t get lost here!). I cannot wait (or can I?) to have one of Addie’s birthdays here– they offer them on weekends!

Addie wants YOU to come to Biomes with her!

When we parted ways, my ladies all said their goodbyes and our little ones did, too. As we turned to leave (close to closing), we saw one of the fish being fed (it was being fed other, smaller fish). It was awesome! I cannot suggest this place more for all your afternoon blues- when you need to get out, but don’t want to do the “usual”, or on rainy days. I could have spent more time here, but the 2 1/2 hours we had were perfect!

*I was given free passes in exchange for a blog review. All opinions are my own and are not influenced by outside sources.

Perhaps no one is wrong to be right

When a new mother holds her child for the first time, it is a beautiful thing. It is also scary. Those dark eyes, just seeing light for the first time don’t immediately recognize the woman that tenderly carried them for 40 weeks. Small hands grasp for the air during involuntary swings of muscle twitches after all those weeks curled up. This new life is being held by a woman who will do her best to raise this child with poise, grace and dignity. To be honorable, strong, yet kind and gentle. Being a new mother is nothing shy of a miracle.

When I first began this blog, it was a few weeks after I had the above experience. After over 35 hours of labor, most of which was unmedicated, the doctor told me to push my first child into the world. I saw her dark hair and I was a renewed woman. I found strength inside me I knew nothing of before, and I, though a labor of love, delivered my first child. Before anyone could catch her, I reached down and pulled her to my chest where she let out hardy screams and cries. After Dave began to speak to her and we were wrapped up skin-to-skin, she settled into me.

Weeks later, sitting in Hasbro Children’s Hospital, after 2 days had already passed during an unrelated-to-dwarfism admittance, we learned that Addie had Achondroplasia. A skeletal survey had shown positive, but the geneticist drew blood to be sent to Johns Hopkins to be sure. As I sat in disbelief, I wondered if I was the right mom for this child. I had never been more than a few feet away from her in the 9 ½ weeks she had been in this world, and she was inside me for 38 weeks and 4 days prior to that. But, this baby seemed new to me. This baby could not be in a carrier, those really deep breaths that sometimes scared me were a sign of apnea- common to achon children, and all those milestone charts I’d printed out meant close to nothing.

I was scared.

The first time I picked her up out of her hospital bed, I looked into her eyes. She wasn’t dehydrated anymore- she was nursing better and sleeping more soundly, and her irises were becoming more and more blue and bright as the hours passed. She gave me a sideways grin- all drool-y and gummy. I put my forehead against her’s and cried. I sobbed. She let me. We connected those first hours after diagnoses, not with me comforting her, but she comforting me. When my eyes could cry no more, I began to research. The information I came across, though some scary, was not at all negative- sleep issues, hips/knees/ankles, spinal concerns, kyphosis, lordosis, flat feet, fluid in the ears/hearing loss, larger head- awareness of hydrocephalus. The list went on, but it was nothing that I could not handle. I began to research doctors, as well as personal blogs for more answers. I came across two famous LP actors, Peter Dinklage and Danny Woodburn– successful men (Peter is in one of our favorite series- Game of Thrones- and Danny is from Philly- so of course, he’s awesome). I learned about TV shows focusing on LP. As we do not have television, I often miss these things. And then I came across Rosie [O’Donnell] and Chelsea [Handler] talking about LP. I won’t say much about it, Google it if you want, except that while having a fear of the unknown is perfectly OK (it’s what makes us human), dehumanizing someone by speaking about them as though they are a deviant, both sexually and in society is a sad, sad thing. There were many comments made, and discussion about giving LP jobs out of sheer pity- but I had to stop watching the YouTube video that was tearing down a community that my daughter was now a part of.

I sat down in my chair-converted bed in Addie’s private hospital room and I started my first blog post. It was June 23, 2012. I called the few people I didn’t want to learn about Addie’s diagnosis online, and then, on June 25th I posted it at 11:59pm. A is For Adelaide and Achondroplasia.

The response to my first post was overwhelming. As we came home from the hospital and I researched LPA, I saw that we, too, were a part of the community. People were emailing me, messaging me and commenting on the blog. There was support, more support and questions answered. Information about doctors, car seats, adaptive items for the home, new charts and parental tips came flooding into my life. I was relieved that I was welcome into such an amazing group of parents, friends, family of LP, as well as a group in which medical specialists actively participate. Addie’s geneticist, in fact, is on the medical advising board for LPA.

I wasn’t scared anymore. I was, indeed, the mom for Addie.

Above is my long-winded explanation of how we got here. The story about how I came across the pickle jars in December of 2012 is infamous… at least in New England and Minnesota. Again, just Google it. I’m the “crazy pickle lady”. While I don’t object to the moniker, I like to think of myself as “the woman whose initial step into making a change was blown out of proportion by naysayers who are not affected by her cause at all.” But I guess that’s too long.

There was an abundance of negative comments on each article posted online, and a few people responded to them in kindness. There was not one article, in fact, with more positive to the negatives- from what I was told. I stopped reading them after 2 minutes and never went back. The radio shows I went on, both in the US and Canada had DJs that seemed to listen, and then mock me as soon as I was off air- as did their callers. NPR, I was told, did not do this- Addie was in surgery during the piece and I missed it. Sadly the segment didn’t make the website, so I cannot hear it now. Callers into the shows were negative and mean- attacking and insulting me personally, where as I never made an assault against anyone. There were emails sent to me through the blog about the “lawsuit” and “court system”. About my “tirade” and “company bashing”. I answer each with dignity and pride. You are more than welcome to read some of them. I will post them below.

There were also comments shared with me by teenagers who found me via Facebook and blog. They thanked me, admitting to reading the story with tears in their eyes. Children moving into a adulthood who have gotten “gag gifts” of these pickles and other items with the word. People who thought they were being funny, but were, in truth, mocking- looking to injure the psyche of someone with a genetic difference. Let me tell you, Reader: It worked. Over 25 high school-ers, and parents of a few middle school children emailed me. Some wished they had done something the first time their child was hurt. I choose to celebrate their paving the road for me. These parents and I have discussed how they were coming from a place of hurt and anger and were more likely to be reactive and not educate, but vengeful. The pickles don’t hurt our children- the people who misuse the word do. Because of this fact, I asked for a change. The word has been so misused, it’s now more commonly used as a slur rather than an adjective meaning “small”. These same parents have asked when they can shake my hand and thank me. I tell them: their words are thanks enough, and I hope to meet this summer. I am no leader, I am but a lone mom walking the same path thousands of other parents have walked before, looking to make what difference I can in an (obviously) unchanging, due to hate and fear, world.

I will tell you dear readers, I did this out of love for my child. I have always been more of an outspoken person. I was meant to be Addie’s mom so I could advocate for her, and teach her to do so for herself. There was never and will never be a lawsuit regarding pickles. While this change may “cost the company thousands”, so does the sensitivity training, paid for each year, that many choose to provide to their employees. I don’t have a lawyer, nor as a SAHM do I have the means to provide one. There was never a tirade or bashing- I did not call for a boycott, in fact, as someone mentioned in a comment, there is a picture in which you could see I had more than one jar of Cains’ Pickles. Yes, I do. I support them as a company- NOT because they are making a change, but because they opened their minds and hearts for a 3 minute video and educated themselves. I do not ask anyone to agree with me or think I am “right”. Having an open mind and being educated do not indicate that you are going to do what someone suggests, it simply means being open to new ideas. While I believe the m-word to be akin to other words that our society has deemed hateful and slanderous, I respect that others do not. While I respect your right to the opinion that the m-word is not derogatory, I do not necessarily respect you for having it. I made a video encouraging change and offering my support in the process. This company responded positively, and I am currently pursuing other companies and mediums that use the m-word. Please be aware that the FCC has been notified, as of 2009, that the m-word is considered derogatory and slanderous to the LP community.

As many have pointed out, this first step was to educate a condiment company. Though a waste of time to many, it is important to me as it affects my daughter and, thus, myself. Some have told me that they were injured in war and they choose to call themselves “cripple” to “own it” and not let the stares get them down. While that is all good and well, my daughter was not made different after she went to war as an adult. She does not yet have the coping skills these people have, nor will she make it through childhood or adulthood as an average person. She is, and always will be, different. Trust me, she owns it. She, however, is not required to “own” a word that is a slur. I do not expect many people to “get it”- I myself would not have understood just one year ago. I, however, would like to think I would not have made a personal attack on another person simply because I didn’t understand something. Or attack anyone, period. What posses a person to feel such hate? Whether I would have expressed  my support, I cannot say, but I certainly would not have offered up such comments like this one posted on the YouTube video I made for Cains:

Did that make you cringe? Yeah. Me too. But, as an attack on me, I didn’t stop comments. I got an email that said:

While I was shocked and saddened, this person was still attacking just me. And then, the last straw. I got an email alerting me to another comment. The reason I stopped comments on that video:

This was day 1. The same day that what was meant to be a feel-good article, was taken to a level I could not have imagined. What goes through the mind of a parent when they see this? I cannot tell you. My mind was blank. I got hot and cold at the same time. I wanted to make the world a better place and people were wishing harm on Addie. I disabled the comments and I stopped looking at my phone.

When the vibrating wouldn’t stop, I picked it up again. TheXtremeWRATH: “MIDGET PICKLES” and 3asi1y: “your kid looks like a midget” on different videos on YouTube came up as notices in my email. I disabled all comments on videos with Addie.

I read my girl her bedtime stories and we said our prayers. I put her down in her crib and she fell asleep. At 2:30am I was still awake- my heart was racing. I was scared that someone was going to break into my home and harm my child. People were making such vitriolic comments about a 10month old. I truly feared for her life. I crept into her room, lifted her from her crib and brought her in with us. I fell into a pattern of wakeful sleep for 3 hours that night.

Finally, the next morning, emails came flooding in from supporters. Emails and blog comments from strangers who have NO connection to dwarfism, and so many more from people who do have a connection- whether it is a family member, friend or themselves. These people chose to not fight “trolls” on Facebook or another website, but to contact me personally and thank me, support me, or to tell me that while they do not feel the same way- they encourage me to do what I think is right an ignore what they see as personal attacks. Parents, friends, strangers who are inspired to make a difference for what they believe in- things that have nothing to do with dwarfism, and everything to do with being proactive. People have cited this story in conferences and meetings, not to hurt, but to encourage others to seek change. One person can make a difference.

Then there were the few who found me off of these article pages- where on most, I’ve never read one comment- and into my email account. Thankfully, I have a junk email address that I can respond from and so I did. I want you, Reader, to know that I stand by my motto. To not be reactive, but proactive and educate. I will not let someone hurl insults at my daughter. Adult bullying is sad enough, when someone wishes to bully or harm an infant, that’s a whole other psychological issue I am not qualified to respond to. All the people who have commented about my husband, please save it- you’re only embarrassing yourself.  We have been married since 2009. If you’ve ever met Dave, he is a quiet, reserved man who loves his family. He works 7 days a week and provides all the love and support we could ask for.

I have been told I am what is wrong with this country and to focus on important things, like the economy. Dave, a small business owner, now spends his weekdays in a position over 50 miles from home, and his weekends at his shop. Does he want to work 7 days a week? No. But, he has a wonderful job that he got as the economy was crashing down around us, and his business was no longer enough to support a wife and child. I focus on the economy so much, that I am often stressed and lose sleep about how we will have enough retirement, can we sell the house, how much college will be, will we be able to have another baby, or what adaptive items Addie will need that we might not be able to afford, like an adjustable chair that seems like a wonderful piece of furniture for her… at $400 a pop. While there are other items we can get instead, you understand my point. I worry. I do not think the naysayers to my actions are what’s wrong with this country, I do not think I am either… but between some civil comments and some not, I think this will give you a better view- a more personal insight- as to what change I meant to bring, and what was perceived. There were many comments on the blog, specifically on the About page, as well as under multiple posts, including Let’s Change the Worldand The Dust Will Not Settle– you’re welcome to read them and my replies. I am including only the least offensive private messages, as I just bombarded you with the evils of YouTube vernacular. In light of this, actor Danny Woodburn made the remark:

Understanding the origins of words and how they have been used to dehumanize often escapes those that use the word for what they think are other reasons, other identifiers. Acknowledging under represented minorities has historically been a hard won change. I commend her for doing this through open communication and commend Gedney for their understanding. Anyone who can’t see or refuses to see what this means comes from too casual an understanding of this kind of societal indifference.

What scares me are the adults who post and think that I should be “ridiculed and more”. Or the people who think I compared Addie to pickles. What were they reading? There are people who think that the m-word on a jar doesn’t hurt anyone, but from the people who are hurt, I hear different. Just as many people were not hurt by a certain candy name in the 50’s and 60’s, other people were. Finally, please know that the people who want to “sue me” for using the song on the Cains’ YouTube video… I created the video using Animoto’s library, which gives me the rights. Please Remain Calm and Stop Being So Legal-Jargon Driven. I did not “take on” any company. I’m not sure why the attacks, but please read ahead. I thank you, once again, for all of your support (not necessarily agreement).

Lastly, I ask… just because I do not agree with you, does that make you wrong? Didn’t think so…

Thank you for reading.

Sean’s lack of respect for my right to an opinion, are what led me to end the conversation- not his actual disagreement with me. Abusing the conversation by repeating “midget” and the past will, oddly, not change my mind. Asking an 11 year old to prove your point? You lost me.

There are so many to choose from, but two these seemed to be the most gentle. Thank you for sticking with me through this. I will be running a series about other changes and bullying in the next few months. Together, we can make a difference for all children.

Firmoo for You

When I got the email inviting me to review an upcoming company, I was skeptical about the prospects of new spectacles, but I emailed back for more info. I am SO glad I did.

I read up about Firmoo on their site- I loved the simplicity of their message: Quality and fashion done right. The prices, by the way, are unbeatable! Recently, we got Dave new glasses from a chain discount retailer. While his frames were under $40, the lenses tacked on another $125! Luckily, there are no hidden prices on Firmoo.

I scanned each page of frames, “trying” each on each pair that I liked (look at your script for your PD or call your doctor- I tried to measure myself but was WAY off!). After looking at more traditional styles, I decided that I wanted to go for bold, but good for daily use. This meant a plastic frame- sturdy for Addie’s grasp, and a basic color. I have a wonderful pair of black Coach frames and a fancy pair of gold DKNY frames that are over 7 years old (I just keep changing the script in them). This was my chance- I limited my search to white, plastic frames. When these popped up, I was in love.

As with the new online trend, Firmoo offers the option of uploading your own pic to “try on” products before committing, known as the Virtual Try-On System. I’ve never had good luck with this feature on other sites- the product NEVER looks the same on me as it did online, but in this case, I was pleasantly surprised!

My ordering page

What they look like in real life!

I was AMAZED that they fit my face JUST like they did in the online preview!

I patiently waited for my email that would confirm my shipment. The glasses come from a shipping company unknown to me, but they arrived at my door, none-the-less, safely in a yellow bubble-wrap envelope. I quickly tore open the paper. They were spotless from the moment I opened the package, which was great. Enclosed I found not just the glasses, but a beautiful soft case and hard case, cloth, screw driver and extra screws!

I threw my other frames on the dining room table and have been wearing my new ones for three days! In those days I’ve been asked where I got my frames, been told how fabulous they look, and how trendy they are! I will admit I was scared ordering online, but I could not be more pleased with the outcome!

Addie loves them, too! They’re built really well- which is wonderful, because Addie likes to pull them off my face a lot. She’s dropped them quite a few times this week, and I have no scratches or bends. Knowing that these glasses are not expensive (which you can’t tell by looking!) is a wonderful thing. Having a baby and glasses can sometimes turn into a juggling act. As a bonus, I am glad there are extra screws, because I actually needed them for one of my other pairs!

I invite you, Reader, to try Firmoo for yourself! Click HERE for the First Pair Free program! All you have to do is pay for shipping- it’s a super easy site to navigate, and the styles you can choose from are updated regularly. I cannot recommend them more highly- they’re perfect for you, or as a unique gift for your loved ones. As long as you know your PD (pupillary distance) and Rx (both are easy to obtain from your doc), you can choose styles that are both practical and fun, all with-in your budget! So let loose and try some new styles!

*I was given a free pair of glasses in exchange for a review. All opinions are my own and are not influenced by any outside parties.