Tag Archives: LPA

Dwarfism Awareness Month

As some may know, October is Dwarfism Awareness Month.

Last year I wrote a proclamation and expected (as only one can expect in Rhode Island) to have to jump through hoops… BUT, lo and behold, I got an email response that October would be declared! It was super late in September, so I was both shocked and SO excited! This year, I got a head start and asked for the renewal of the proclamation in late Spring. And… it arrived just a few months ago!

I ask you to please make October Dwarfism Awareness Month in your state, too! HERE is the perfect wording!

Dwarfism Awareness Month #aisforadelaide

Thank you for helping our community gain some footing- more people knowing, expressing and seeing that people with dwarfism are people. Please consider, even in the medical community, a picture of someone with dwarfism starts out with “This dwarf…”- no other disabilities say this. Most read as: “This PERSON with…”

Let’s make a change.

Let’s spread awareness.

Let’s do this. Together.

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Filed under Achondroplasia, Community, Educate/Adovocate/Make Change

Survival of the Fittest

#aisforadelaide Survival of the Fittest #dwarfism #achondroplasia

Photo by Lisa Gendron, Agroterra Photography

There are some things that just boil the blood. For the most part, while I don’t agree with “teaching thick skin” to my kids, I do force myself to toughen up. But… there’s always a but.

If anyone who reads this blog thinks that Survival of the Fittest is something that doesn’t apply to my child, that her medical treatment isn’t something that should be covered, I have a few concerns about your fitness level. I question your ability to survive. I wonder, if the application of survival of the fittest should apply, why are you not dead?

From behind the “safety” of your IP address (guess what, that’s NOT hiding your identity), you’ve sent emails about how my insurance should continue to fight me because if my child was not different (I will never repeat your words), she wouldn’t be a financial burden to the insurance system. How I put her through life. A barrage of your friends agree with you- that’s why you feel you can write to me in such a manner. So I ask you a few questions.

How many people from behind their LCD screens, reading these very words just took a medication? Something as innocent as Tylenol or ED meds (which can be a sign of needing to see a cardiologist). Maybe something serious like blood thinners or insulin? Have you needed a blood transfusion? Ever had pneumonia? Have you broken a bone? Did you know you could die from an infection if a broken bone is left untreated? Now, how many of you also have children that are not fit enough to survive?

Survival of the fittest is not about surviving because you’re the fittest, it’s surviving all of the things that come your way. They are what make you “fit”. Fit to survive.

The 7,000+ members of the LPA who strive for awareness. Those people who have gone through and the parents who continue to push through surgeries, while groups band together for support and love- an outpouring of strangers who become family. I don’t think my daughter is amazing because she has a form of dwarfism. I think she is amazing because she’s taught me more about humility and humanity. And humanity is kindness. And those who are kind, survive.

Kindness is to love, but not blindly. To lead, but know how to follow. To not fear the unknown, but those who do not seek to know. The strong, but not the tyrannical.

Survival of the fittest… those who surround themselves with who and what they need. Who will support them and who they support in return (support does not mean agree with). Who adapt society to them, adapt themselves when they can’t, and create change to improve the world. Yes. The world. Those who survive, are the kind.

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Filed under Achondroplasia, Community, Educate/Adovocate/Make Change

Listen to Your Mother… that’s me!

I am still full of awe and honor to have been a part of the 2014 Providence Cast of Listen to Your Mother….

Listen to Your Mother Providence Cast 2014 #aisforadelaide

(My intro written by the talented Carla Molina at All of Me Now):
Chelley Martinka is a Philly native with a little thing for Game of Thrones. A closet drummer, she’s a mom to one awesome kid living with dwarfism and is expecting her second daughter this fall. Chelley is up next with “Do It Ugly.”

Do it Ugly

Everyday, when I look at my planner, I see this quote, Dream so big you’ll look like an idiot if God doesn’t step in!

It’s a reminder to do it ugly. To get in in past my ankles, waist deep. To get dirty, cut- go full throttle.

Growing up, I was loud. I would sneak out. I smoked cigarettes and overly enjoyed cheap beer. I played a lot of sports and I was rough when I did it. I got injured. I suffered from depression. I liked a good party. I liked to study so much I graduated college with a 3.5 in 3 years with almost no friends. I got tattooed. And then got some more. I got dermal anchors before they were a trend. I dated. I over committed to people that needed “saving” and after they were saved, I moved on. I broke hearts. I uprooted myself a lot, took on a lot of jobs, was reckless with my emotions and other people’s hearts.

Doing it ugly was more about how low I could go. How many problems I could fix of someone else’s while ignoring my own needs- uselessly helping others chase their desires. I knew I’d never stick around long enough to see the ending. Like the friend who needed money for car payments… a loan I would never see the repayment of- I worked weeks of overtime. I’m not quite sure why, except it seemed like the right thing to do. I was a wild one with a sucker-streak- looking to take care of all the people surrounding me, and sleeping as little as possible while doing so.

But then it happened. I was approached by a lion tamer with the patience of a kindergarten teacher and heart of a saint. Some have come to call him Dave. So here I was married. A wife. Together we ripped apart the money pit and created a home. We both worked long ours and enjoyed uneventful hikes with our dog and nights by the firepit with friends.

Gone was the Chelley of the past, replaced with this woman who quit smoking, ran half marathons, was letting someone else take care of her once in a while, learned to enjoy wine over whiskey and, for whom staying up late lost its once alluring appeal. Who the hell was I, now?

Not looking for redefinition, she came- The reason I had to get all riled up again. My reason for getting my hands dirty- I was ready for parenting. Here I was, rolling up my sleeves and spending late hours burning the midnight oil- literally- we have oil heat. But I was more than prepared, I’d been practicing to parent this special lady since my days as a rebellious teen.

I knew everything I did from the moment I heard her cry would be things she would be proud of. My perseverance would be her life lesson. I would work hard, and when she was diagnosed with a high-functioning disability, I knew I would dig harder than I’d ever imagined. With letters, videos and a blog, I would educate about our life as a family. I’d take attacks and hard words and fight to change the stigma. I’d create a team consisting of specialists in Massachusetts, Delaware and Rhode Island. I don’t know the answer to that, would be an answer I’d never settle with.

I would allow no one thing would define my sweet girl, a lesson I’d learned from my own mother. Dwarfism, gender, religion or a favorite band would simply be aspects.

I would raise her to be generous, dignified and tough. A woman who could do whatever she pleased, in jeans or a skirt, at a bar watching the game or in the courtroom arguing her case. With my biggest dream being a world that truly sees no difference between my Adelaide and any other human. Recognizing her disability as something about her, not something that defines her.

I spent two days bringing her into the world… and I will give my life to give her dreams so big that she never knows what the ground looks like with her eyes closed.

And while most of my days are beautiful- I work hard to make sure they are. Everything in life that feels like it’s too much is all the more reason to get in there. To do it ugly. Everyday isn’t a fight, but when it is, I make sure it’s worth it, to go hard.

This life is my one shot to make it what I want and give that power to my future warrior woman- and no one will lessen my gusto or dampen my dreams- not even God, herself.

Listen to the cast:

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Filed under Educate/Adovocate/Make Change

LPA Fashion Show #lpaSD2014

While we enjoyed all the workshops that the LPA National Conference had for us, we also loved participating in other events- like the Fashion Show! Check out Addie in her first appearance in the LPA Fashion show at #lpaSD2014!

LPA Fashion Show #lpaSD2014 #aisforadelaide

#aisforadelaide LPA Fashion Show #lpaSD2014 #rehearsal

#aisforadelaide #lpaSD2014 #firsttime LPA Fashion Show

#aisforadelaide #lpaSD2014 LPA Fashion Show #cuteasabutton

#aisforadelaide LPA Fashion Show #runway First try!

#aisforadelaide #lpaSD2014 #finalrunwaywalk LPA Fashion Show

#aisforadelaide #addiandjack ##lpaSD2014 LPA Fashion Show

#aisforadelaide LPA Fashion Show #addieANDPayton #lpaSD2014

#aisforadelaide #LPASD2014 #life LPA Fashion Show


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Filed under Community, Travel

Sleep in Luxury at the Manchester Grand Hyatt San Diego #travel

We went to Dan Diego for the LPA National this year, and though it’s only our second National Conference, like last year, I was blown away by the fantastic hotel that was chosen as the main site. The Manchester Grand Hyatt in San Diego offered many comforts in the rooms, wonderful on-site food, is within walking distance to all-things awesome, and has gorgeous views from both towers (where guest rooms are located)!

When we pulled up to the hotel, it was about 1am. Eight of us unloaded from a shuttle service we’d all taken for a nominal fee from the airport located just a few miles away. Immediately men were there to take our bags and help us to the front desk where I checked in and asked a bunch of questions pertaining to our reservation. Because we were staying there under the conference rate (unbeatable) and when I’d first booked the night of July 4th was full, I ended up needing to make 2 different reservations to get the dates we wanted. Though understandable, I was bummed to learn that we would have to switch rooms the next day, but not to worry about that- we could stay in the room as long as was necessary to get our other room ready- a HUGE relief when you’re talking toddler, luggage and pregnant mama.

#aisforadelaide #hyatt #sandiego #travel #california #sleep

The beds were, clearly, very comfortable!

We started out in the Harbor Tower, getting to our room, searching through our suitcases stuffed with rolled up clothes until we found our PJs and toothbrushes, then passed out in the comfy bed. I was happy that although it was the 4th of July and there was a lot of celebrating going on, I didn’t hear it through the walls. We were able to get a great night’s sleep, and thanks to the time change and a nap on the plane, we were up pretty early!

We wandered out to get breakfast at  Café 222 (I’ll tell you all about that in another post) and then we headed back to the hotel… on our way stopping at an awesome playground and community garden to swing, walk, and talk about outdoor gardening all-year long! It was SO cool to just happen upon a superbly clean (not even a cigarette butt or graffiti in sight) city play area with such a beautiful garden and maintained path.

#aisforadelaide #sandiego #travel #communitygarden #hyatt #manchestergrandhotel

When we got back to the hotel from our breakfast and walk, we packed up anything that had been unpacked, checked out the view and then got a call that my parents had arrived! Addie was just ready for a nap, so Dave went to meet them and collect their luggage  until their room was ready- awesomely, by the time he got down to the lobby, their room was already ready (3 hours before check-in time!) and he helped them get to their room and settle in before he headed out for some snacks.

When he returned, we moved into the room where we would stay for the remainder of our time with the help of a bellhop and a sleeping toddler perched on my shoulder. This time our room was in the other tower, the Seaport Tower, on the 29th floor. Because we had to switch rooms, they actually gave us a higher floor (better view) without asking! The rooms were almost identical, with the biggest difference being that the bathroom layout was a bit different making the door open as you would expect, where the first room it slid open (which was really cool!).

#aisforadelaide #travel #sandiego #manchestergrandhyatt #hotelviews

We had a room with 2 double beds, thinking Addie would be in her own bed, but because she’s two, she ended up in our bed most nights- which made me wish we’d gotten a king, but the beds were comfy and we made it work! The table by the window was great for sitting and looking out over the city and I loved that we had a comfy chair so that I could sit and read while Addie napped (everyone made use of that chair for the same reason!). We also could relax in the room with the single-serve coffee and teas they provided which were actually good! The desk in the room was perfect for getting the work done that I could without WiFi, which was only free in the lobby, and the large TV in the room got PBS- making everyone happy when the adults wanted an extra 10 minutes of prep time and the Miss wanted to go, go, go on an adventure (from the Cat in the Hat theme song!).

#aisforadelaide #manchestergranhyatt #travel #hotelreview #sandiego #toddlerlife

The biggest drawback of the room was the fridge that was not only really small, but didn’t get cold enough to hold anything that could spoil. At conferences, we like to bring or buy food while we are there to save money on eating out, but not having refrigeration made that hard. Being able to rent a microwave for the room, however, is pretty awesome! The sink in the bathroom also seemed really high- and I’m tall. While the look is clean and modern (which I love), it’s not easy to actually use (I stood on my toes to wash my face over the sink without spilling water everywhere).

Finally, the pool! While we didn’t make it to the pool designated for adults only, we did get to spend some time at the 4th floor pool, which was beautiful! We walked right out from the elevators, to the deck, which is easily accessible from either tower and grabbed as many towels as we needed (no need to steal them from your room!), parked ourselves on some chairs near the steps and enjoyed playing the friends, splashing and sipping water. There is deck-service, which is awesome, for anyone who wants to order something to eat or drink right from their chair! Addie and Dave spent a lot of time in the pool- with Addie playing on the steps and jumping in from the side with the other kids. Me? I lounged my big, pregnant belly in the sun for a dose of vitamin D and a nap! The chairs were so comfortable, I would have stayed there had Dave not reminded me we needed to get dinner before Addie’s bedtime!

#aisforadelaide #travel #sandiego #pool #luxurytravel #hotelreview #manchestergrandhyatt #hyatt

We really loved the hotel and all the grandeur it offered while still being affordable (at the conference rate for us), but wish the lobby had been a bit more conducive to meeting people. Last year at the conference the hotel lobby was built in more of a compact and circular feel, with the lounge closer and lobby seating closer together, as well as the hotel restaurants close-by. This made it easier for people to connect and bump into each other. With the lobby being planned in more of a rectangle with the bar at one end and a café at the other, and minimal seating, it was hard to bump into people- although easy to find a place to meet up if you planned it.

The Manchester Grand Hyatt made staying in the city such a luxury- close to good food and meet up spots like the The Seaport Village and within walking distance to the Gaslamp Quarter and convention center- this is the place you want to stay, whether business or pleasure, on your next trip to San Diego!

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Filed under Reviews, Travel

Keep Pushing

I was unable to find anyone who recorded (or even took a picture!) of the LPA Speakers’ Night, but I wanted to share my piece with you. I plan on recording me speaking it, but wanted to share it with you (written) in the meantime. So, without further stalling, here is my LPA Speakers’ Night Piece entitled: Keep Pushing.

#lpaSD2014 #LPA Speakers Night

As I embark upon the birth of my second child, I find the title of my piece ironic.

Keep pushing.

While that’s not my birthing mantra- that one is just breathe- Keep pushing is my mission in life.

Letting ourselves be defined by anything, even things that are so apparent, like our gender, sexual preference, race or disability is no way to live. It’s no way I will let myself or my children live, so why do other people expect me to allow such behaviors from them?

The answer is simple. The answer points a finger. The answer stings. The answer is me.

People treat others as they are allowed to. Sad? Pathetic? Lame? You bet. But it’s the truth. We love to take advantage of life- be lazy where we can be. We often, as humans, forget the implications of our language.

We let people call us homo, fat, crazy, midget, whore. Because as a culture stopping these things is too “politically correct”. We fear that we are being “too sensitive”, we aren’t raising tough kids, or we ourselves do not have thick skin.

“Good luck this time!”
“Good for you- trying again.”
“Sucks you didn’t know before she was born.”
“Is there anything they can do for her when she’s older to make her taller?”

Fellow humans have said these things to me. Why does the world view dwarfism as something to be cured, rather than embraced as a difference?

We don’t want to question what others say. We give up our right to know about ourselves when we don’t ask the hard questions.

“I don’t know.”
“We will learn together.”
“Let’s come back to that.”
“This is my first one.”

Doctors have said these things to me. Why is the education about dwarfism so slim that many medical professionals fear the diagnosis of dwarfism- offering patients little education and less options.

My mantra, Keep pushing. For respect, for knowledge.

Do you see it yet? Do you feel the need to push?

There is change that can be made. There is change that needs to be made. There are generations coming up behind you and me, behind the children being born today and the children following them. There are millions of people yet to be born, and thousands will have a form of dwarfism.

But they will not be dwarfs.

They will be painters and doctors. They will be writers and scientists. They will be political leaders and dreamers and veterinarians. Those born with a form of dwarfism will love and be loved. They will change lives and shape the world for future generations. The way we need to now.

There is a need to define ourselves by what we want as a community and let the masses, not the few, lead the way. Television shows that pigeonhole this community, media misconceptions, movies and comedians are things of the past when we push- and keep pushing- to be defined not as little people, but as people. Height doesn’t make someone smart, or happy, or better than. Average height just makes you average.

Be spectacular regardless. Keep pushing.

When a doctor tells me they do not know, I ask, “how will you find the answer?” When I am given news about a health concern and then that same medical professional attempts to leave the room, I ask for further explanation. I ask what our course of action is. I ask what their medical opinion and experience are. What is the timeline. How do we proceed? I push to know more. I push to make them answer. To make them accountable for their diagnosis. I refuse to let Google do my doctoring. I refuse to leave not knowing.

Too many parents email me with the same story. It goes like this: The doctors told me my baby would be a dwarf. They gave me a packet of papers and told me to make appointments for these things. They told me to be prepared, but not for what.

More often than not, I offer my telephone number. I spend hours each week calming mothers-to-be and new parents. Not giving medical advice, but offering an ear and listening to questions that are left unanswered. Unanswered concerns from a doctor who left their patients with a handout and maybe a few people to call.

This is not OK. This is not how patients should be treated. Dwarfism is not unknown. Specialists exist!

In my hours on the phone I’ve looked up local hospitals with clinics, referred many to our own team in Delaware, and always given out the LPA’s website. Hours spent giving the same basic information that needs to be readily available to all patients with a diagnosis of dwarfism. Support, love and most importantly, knowledge.

Keep pushing.

Keep pushing so that when someone sees a person of short stature they smile, the same smile they offer any other human on the street. Why? Because a person of short stature is any other human.

Keep pushing to make changes, because if there is such an uprising about a professional football team name change, then there should be a change across the nation of high school sports teams named The Midgets. Because other people do not decide what offends you. Because other people don’t control our emotions. Because being sensitive, caring, respectful people is what defines a civilized culture. That is what humanity means. Because even doctors need to learn something new every day. Because bedside manner isn’t dead (and neither is chivalry, if you were wondering).

There isn’t a facet of our culture that doesn’t need advocacy from our community, so be that voice. Never stop pushing because it doesn’t bother you anymore, or because you think one person can’t make a difference. One voice. One community. One change at a time.

Keep pushing because letting ourselves be defined by anything, even things that are so apparent, like our gender, sexual preference, race or disability is no way to live. It’s no way I will let myself or my children live, and I won’t being defined by anyone but myself.

 

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Filed under Achondroplasia, Community, Educate/Adovocate/Make Change

Marvelous Monday

So much to say about what’s been going on, but I keep reflecting on our wonderful experience in California.

If you followed my social media pages, you may have noticed #lpaSD2014 making it’s way around with pictures, quotes, and events… all leading to the LPA National Conference in San Diego. It was amazing.

It is also something that we could not have participated in without the help and support of our parents and my aunt and uncle. Both my parents and Dave’s helped us get there (via flyer miles, rewards, food, and accommodations). I am also extremely grateful for my dearest, who works his tail off at work and then each weekend doing repairs to save up for the cost of eating away from home (yes, a BLT in San Diego is $10!). But it is more than the money. It’s the understanding. My mother-in-law was initially going to come with us (she will be attending workshops with us in Boston in 2017!), but decided that it was just too much for her… however, she still supported us going, which means the world to our family. San Diego is an awesome vacation spot, but the conference, the LPA organization and the knowledge and friendships we gain each year are invaluable to us.

#Aisforadelaide #lpaSD2014 #family #friends #dwarfism

Addie was blessed this year with a gift from a family who lost their child to a rare(r) form of dwarfism with a Lifetime Membership to Little People of America, and we could not be more thankful. Knowing  that Addie will always have access to the best advocacy, community and medical advice, even after Dave and I are not here to guide her, eases my heart. There are so many lesser known facets to the LPA organization that I hope she explores- including scholarships and a deep-rooted community- that having this membership offers her access to all this and so much more- forever! #aisforadelaide #lpaSD2014 #LPANationalConference #SanDiego

With that, the opportunity to go to as many regional (local) and national events as we can gives us all opportunity to learn, play, educate and be educated. Last year, I was a part of a panel that focused on social media and how we present ourselves as a community, and this year I spoke about why I keep pushing (advocating) for more education and awareness. Dave got to learn about different home adaptations and how he can make our house more comfortable for Addie without making it difficult for us. Even the grandparents got to go to some workshops and learn a bit more about what it’s like to grow up as someone with dwarfism, the things they can help Addie with, and just take part in the community.

#aisforadelaide #lpaSD2014 #expo #travel #sandiego

All-in-all… this was an amazing experience. Made that much better by our trip a few hours north to see my Aunt Donna and Uncle Ted. While I am forever grateful to the LPA and being able to experience national events, being able to see my Uncle Ted meant more to me than I can express. My Mom did not find her brother until she was in her 20’s. Adopted at birth, she was able to reconnect years later with a lot of research… and I am so glad she did. My Uncle is amazing- traveling to see us a lot in my youth- and coming to stay with us for much longer than he anticipated, when my Dad passed. We often joke in my family that I was a wild child, but that didn’t really happen until my Dad died. My Uncle saw firsthand how out of control I became and how quickly I down-spiraled. But still, he stayed. Day after day he supported my Mom and did everything he could to help with the daily running of the house, and the big things that my Dad had been too sick to do in his last months of life. Going out to see him, hug him, talk to him and see the spark in his eye was more than I could ask for.

#aisforadelaide #lpasd2014 #family #vacation #travel

He’s sick. I hate that. I hate seeing a man who has rocked the world, serving our country, playing a major role in aerospace development, advancing the programs that offer guide and service dogs to those who need, and most of all being an amazing family man- he’s diminishing in body… but never spirit. I was afraid he would be fragile and was instead surprised to see him, stout as ever, never batting an eye when he needed oxygen or apologizing for needing a break. Quite simply, as Ted has always been, he just is. Maybe that’s where I get my no apologies life-view from… I am who I am, be damned if it upsets you or makes you uncomfortable. And my Aunt Donna, his rock, she’s kind of amazing, too. Her love, support and drive are inspiring. A teacher for years, she set Addie up with all the fun stuff while accepting oxygen deliveries, getting towels for Addie and I to swim, her beaming smile never fading.

#aisforadelaide #family #LPAsd2014 #sandiego #losangeles #travel

There are some days that are really hard. For everyone. I have a family who has taught me, and continues to do so, that there are way more rainbows than rain if we look for them. I am thankful that we got to Cali this summer… for the sun, sand, friendships, education, family.

Have you done a big summer vacation this year? What was your favorite part?

Happy Marvelous Monday, Reader! I hope you have a beautiful week!

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Filed under Community, Marvelous Monday, Travel

Marvelous Monday

And so… we are back. Many times I spent my Marvelous Mondays writing about what I am thankful for as friends or my surroundings, but today, I want to be thankful for opportunity. We don’t go on date nights, or celebrate with fancy dinners or outings, most of the time the idea of vacation seems intimidating and daunting for the sheer cost factor, but we are never short on opportunity.

Much thanks to our parents, who help us do the big things in life. We’d love to cruise the Bahamas, take a trip to Disney, see the Eiffel Tower… but more than that, we want to learn and support this amazing community around us- the reason I even began this blog… we want to be active members of the LPA as fully as we can be!

Last week, we took full advantage of our membership and joined hundreds of others in San Diego.

#aisforadelaide #marvelousmonday #lpaSD2014

I spent hours in workshops, gatherings, meetings and group events… to learn, to think, to take notes, to listen, to share, to dream, to wonder, to play! Addie participated in her first fashion show! I met SO many wonderful people I’d only ever spoken to online. Dave got to SIT DOWN! I spoke… in front of way more of a crowd than I was expecting, and though it was not recorded (to my knowledge), I will share the piece with you soon. We made friends family.

So, what is there to not be thankful for in life? I’m not thankful that Addie will have to undergo another MRI for more imaging. I’m not thankful that we still don’t know why she’s blacking out. I’m not thankful that there are so many questions and so few answers… in general. But who is counting? What this means is that there is more to see, more to know and more to learn. Advocating for our community, for our family and for Addie herself is never done. So let’s start this week in thanks… and get ready to work hard once again!

Happy Marvelous Monday, Reader!

love,

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Filed under Community, Marvelous Monday

Marvelous Monday

Oh. Em. Geeeee!!!!!

There’s so much to say and so little time to type! I just want to let everyone know- we made it safely to the LPA National Conference- and I survived another public speaking engagement! We miss our sweet Carter Jay, but he’s having fun with his grandparents and ruling the roost.

If you are here at the conference, please let me know! I would love to meet as many new people as possible! Just leave a comment, or email me through the Contact tab! I will be posting way less this week and appreciate your understanding!

Lots of love and a beautiful Monday to you, Reader!

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Happy Fourth!

We are celebrating our wonderful country by flying the friendly skies! We are heading to the LPA National Conference, as well as a visit to my Uncle Ted (Camille Thea’s honoring him with her middle name), and we are so excited.

But before we go, this beautiful American girl wanted to wish you and your family a Happy (and safe) 4th of July!!

#4thofjuly #aisforadelaide

 

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