Tag Archives: family

Every Six Months…

We made it to Delaware… with minimal traffic- which always makes me happy! Being in the company of doctors who are so confident and can answer questions that I forgot I had, or that I never even thought of always calms my mind.

When we got into the room with Dr. Bober, we sat down and Addie started playing. We talked a lot about where she was developmentally, her walking, her sleep- the usual. We then talked about her ears- which are at the top of my worry list. With her tubes coming out and her infection, we came to the conclusion that she will, most likely, end of with another set. Also, interestingly enough, we discussed the idea that her adenoids could also come out. Our ENT, locally in Rhode Island, spoke about a 50% chance that if we remove the adenoids with another set of tubes that a recurrence of tubes would be unnecessary. Dr. Bober assured me that this number is not reflective of children with achondroplasia.

A new lesson in life.

So… we will check her ears in a few weeks, see if there is fluid in there, and then take it from there. Should fluid still be in there, we will check for swollen adenoids. Fluid, tubes. Fluid and swollen adenoids, tubes and adenoids. Plan of action- simple! Of course there are a million steps in between, but to have a start and an end point makes the middle ground a bit easier to navigate.

So we are moving out of the worry of hydrocephalus, as her soft spot is closed and she has no signs, as well as the concern for central apnea (which seemed to disappear after 6 months) and kyphosis because Miss A is up and walking… and her x-rays looked amazing! Hearing that her spine looks great is nothing short of wonderful news!

And what are we looking at now? The bowing in her legs, which is something Dr. Mackenzie really keeps an eye on. Obstructive apnea and being aware of the signs, such as snoring and bad sleep patterns. And we also have to be more conscious of ear infections, especially because Addie’s tubes fell out already… but we already talked about that! :)

Some interesting facts for expecting mamas:
We have a 2-3% chance of having another child with achondroplasia.
A Level 2 ultrasound after 30 weeks will give us answers if there are size concerns.
We could still have a child with dwarfism without knowing (just like with Addie!).
Bonus?
We aren’t concerned. Knowing what we know now, we are thrilled to be welcoming another baby into our family!

… and then Dr. Mackenzie. After we ended up doing acrobatic acts on the floor:

#aisforadelaide #babyyoga

#aisforadelaide #yoga #downwardfacingdog

Colleen and Mac came in to examine my sweet yoga girl. After a few looks at her, we took to the halls of DuPont for some walking action. Make that running! Knowing that she’s been falling sideways a lot, I was worried about her legs and knees… but thankfully her legs are just the way they are (for now). We are having x-rays done to make sure her legs are going in the right direction and, as usual, monitor if she has any pain or increased falling.  Addie does have the typical hyper-extension in her knees, but she also has hyper-mobility that causes her knees to arc sideways, which could be adding to her falls (but not bad per se).

As expected, we will be going back in 6 months (really 7) for her next set of appointments and are excited for what lies ahead. The best part of going to DuPont are the answers, the new knowledge and knowing that the next time we see these specialists we will have a whole new world opened to us. Given that we see the doctors every 6 months we are never given too much information that we worry for months to come, but we always leave with things to think about.

… we hope we can work with our insurance going forward and are looking to generate more information about United’s vendetta against major medical providers and bringing them back to Nemours! (Hello high hopes!)

Until then, We hope you had a wonderful Sibling Day… Addie loved giving her soon-to-be baby sibling a kiss while we were on a beautiful family walk:

#aisforadelaide #siblingday2014

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Marvelous Monday

I seriously cannot believe it’s Monday. I feel like we didn’t get a weekend- it was so jam-packed! …and while I am certainly stressed out and frazzled from the festivities, it’s the best feeling in the world.

I usually have a format… thankful dwarfism random that I follow, but this week, I have two thankful-s and no random. I know. I live on the wild side- even breaking my own rules!

SO this week, I am thankful for all the medical wonders we have at hand. While it is not my story, I will say that my newest nephew, Beckett James, has arrived. As I would expect any child of my bestie would be, he has a bit of a flare for the dramatic and didn’t make his entry into this world easy. But he is here. My beautiful (by everything but blood) sister is not only doing well, but looking like a super model, and they are heading home today. I spent much of my weekend running between birthday celebrations and the hospital, and I feel so tired but so energized at the same time. That feeling of holding new life. The one-on-one time of a new baby, in the quiet of the night (sure, I stayed a bit beyond visiting hours), talking to my friend. About our parents, about the future, about our families, and plans and and and. It was like a sleep over, with cooing and sweet baby breath. I took photos as my nephew took his first bath, and we laughed at re-learning to change a diaper (we both have girls for our first babes). This experience made me wish I lived closer to my big sister in Florida, wishing I could have been by her side, and also brought about such a deep love for this woman who mustered all of her love and strength to bring sweet Beckett into the world. I’m so excited for the next chapter!

And what else could I be thankful  for this week, if not the amazing women who rallied behind me almost 2 years ago through Rhode Island New Moms Connection? These women have given me so much love and support, and having them surround us to celebrate Addie’s second birthday (a little early) meant so much to us. We played, ate delicious pizza and mini cupcakes, and then played a bit more… and I watched as each child made connections to the others- all of whom they have known for their entire lives. Many of the kids ran up to other parents, giving hugs and kisses, because we all know each other. We all have a bond with each other- those first few weeks of motherhood that we spent together sitting on a floor with our new babies, trying to make sense of what we were doing right, and what we needed to change. Having those same women beside me… that’s what keeps me going. But there’s more. There are the moms I know from other personal experiences… like a friendship kindled over a wedding gown, flourishing through a love of hockey and sharing a first pregnancy! And friends from our cherished LPA community who made the hike to play, and pick up good conversation like we’d just spoken last week. A comfort and bond brought to us by a shared difference, making us  common- but a friendship we grow together watching our kids enjoy Life.

#aisforadelaide #birthdayparty #hangingaround

Just hanging around (BY HERSELF!!!!!). She’s come a long way in 2 years!

I have been blessed by my experiences, no matter how frazzling they may be, because they have brought me right here. To you. What will happen this week that will test you, but also teach you, nourish you and grow you? I hope  you find those moments and smile.

*  *  *

And what’s new in the dwarfism community this week? The LPA National Conference registration opened on the first!!! I would love to know what families will be there this year! We are so excited to meet new people, explore California and learn as much as we can at the workshops! Stay tuned to the blog for my conference tips later this month!

Lots of love to you this beautiful Spring week!
xo,

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Adelaide has achondroplasia

Adelaide was born after a lengthy labor on April 17, 2012. She was perfect. Beaming up through eyes that spoke of wonder. We swaddled her and held on for hours. It felt like we could not sleep. She was too much to let go of- her small body (18″) was a ball of cuddles that we’d waited almost 39 weeks to hold.

As the weeks passed, I noticed she didn’t look like the other babies in my new moms group. She was… rounder. She was happy, and a great sleeper, but she wasn’t the same as the other babies and I couldn’t put my finger on it. Each morning as I dressed her, I saw that her clothes fit oddly, and her head struggled to fit in her onesies.

Her head is big, I remember saying to her pediatrician’s nurse as she took measurements at her two month appointment. Addie was 9 weeks… and the ball had suddenly been put in motion.

When the doctor came into the room to examine Addie, she took two looks at the measurements and whipped out her own tape measure. She looked Addie over, asked me some questions, and cooed at her tiny patient.

What was happening? I wasn’t sure. But my stomach was in my throat,

You’re right, she confirmed about Addie’s head. It was bigger, but she was also measuring a bit small. To be safe, the pediatrician ordered an ultrasound of her head and x-rays of Addie’s long bones (arms and legs) to make sure everything was working as they should be, to be performed the following Monday, but we didn’t make it that far. A few hot days later with a lethargic infant and incessant fever, Addie was admitted to our local children’s hospital. An emergency CT of her head was performed to make sure there was no abnormal fluid in her head- this called for multiple spinal taps to be attempted unsuccessfully (and without anesthesia of any kind) to check for meningitis. Due to her high level of dehydration, the tests were lacking enough fluid, and we were left to give her broad spectrum antibiotics.

Panicked, I called my mom (250 miles away) who hopped in her car and started the drive up.

Because the tests were already on the table, while admitted, Addie got her x-rays and ultrasound done. After hearing that her head and brain were fine and there were no signs of hydrocephalus, we were wheeled back to her room to wait. I tried to sleep, to read, to do something, but I was stuck in a whirlwind of what-ifs.

I’d read it all… so when a woman came in who introduced herself as a geneticist, I knew we were looking at something serious. I listened to her introduce herself and say that she just wanted to stop by and check in on us. She was asked to look at Addie’s x-rays… I stopped listening, but then  she stood up, shook our hands and left.

Photo: Dimery Photography

Photo: Dimery Photography

I tried to nurse Addie, who was still having trouble eating, so I resorted to the pump. As I stood at the hospital room sink, burning my hands in the water, I looked up in the mirror to see the geneticist walk back in. I stayed there, forgoing the pain of the water for a minute. The look on her face was a nervous smile, not that of a confident woman. I sat down. I was prepared… but numb. The woman in front of me talked about the x-rays, the best doctors in Rhode Island, thorough examination…

Adelaide has Achondroplasia.

My husband asked what that was, but before he could finish his questions, I blankly said dwarfism.

I cried. A lot. I didn’t know enough about what was happening. Was this why she was sick? Would she be ok?

As it turned out, her dehydration was unrelated. She wasn’t great at latching, the summer was hot, and she had spiked a fever. That was why she was sick. Dwarfism was not an issue here.

In fact, here we are 2 years later, and dwarfism isn’t an issue anywhere. Some things are different- that’s for sure. Addie is a pro at staying still for x-rays, falling asleep with things attached to her head and body (sleep study), she can travel hundreds of miles by car without much issue to get to and from her geneticist in Delaware, and she’s encouraged to climb objects to get what she needs (where as other kids are told not to!).

When I think back to those days in the hospital, the fear and the unknowns, they scare me- how could I know so little about my own child? But they also serve as a reminder that what is different is not bad- difference is something to be celebrated and advocated. Our lives are different from most, of course… but it’s an amazing life. And that’s what means the most.

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I Take it Back

Let them eat cake.
Well, not my child, but whomever choses.

Recently I reposted THIS article from HuffPost Parents on my personal Facebook page. I’d love to be featured there, but I won’t do it via parent wars. So here, I offer my rebuttal:

At first read, this opinion holds a lot of water with me. Why go so crazy for every holiday? I don’t see the point. But hey… that’s not my family. I also don’t see why people drive $100,000 cars, hate tattoos or still have flip phones. But judging others won’t change them, it just makes my point of view narrow. I see how some holidays have gotten, for my family, out of control. So I choose to not make traps for leprechauns or host color-coordinated Easter egg hunts. This doesn’t mean I’ve sworn off Pinterest or the fun crafts that come with the holidays, it just means that I don’t stay up until 1am for every holiday making a path of coins or creating a huge mess from a Christmas elf. But you know what? I wrote THIS piece over Christmas about why I don’t want to be judged for my Elf on the Shelf. My parenting my child does not affect you. I am not teaching hate, bullying, judgment or harm. I am instilling memories, silly times and having some fun myself- all in a way that does not overwhelm me. I defend my creepy little Christmas doll because he adds some more wonder to the holiday. As with the rest of our celebrations, we incorporate food, but not candy or sweets, and like to teach a lesson- as simple as a Bible verse or learning to save the change from our pockets. Another child gets 8 nights of gifts, and sure, that seems unfair to a child who only gets one… but there is a story, religion, culture and familial beliefs surrounding all celebrations. It is not up to our children to dictate how we observe holidays, or for other parents to redefine our celebrations.

#elfontheshelf Jingle #aisforadelaide

Who am I to judge you, parent who takes the time to handcraft Valentines for each class member or makes fondant topped crafted confections personalized for your child’s birthday? I am not one to pass judgment on anyone.

If I choose to make an observation, it’s that any child who doesn’t have what another child does and has a tantrum because of it, does not deserve a stressed parent who will appease said child. It is a life lesson- a family lesson, if you will. “We do not celebrate by doing x, y and z for the holiday.” End of story. I know tears and a few “it’s not fair!” arguments will ensue, but it is! Fairness is celebrating with your family as your family does.

When we look to others to make ourselves feel better about what we, as parents, do differently, we are creating this rift we claim to be fighting against. Our lives are all different from each other. We can’t preach love and acceptance to our children if we, ourselves, do not believe it. I am not a lazy parent if I choose fill-in Valentines, and I am not an over-achieving parent if I choose to make handcrafted gifts for all of my child’s teachers. I am simply parenting as I do. Let us release our insecurities. Let’s do more than teach that difference is OK- let’s believe it.

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Life Hacks for Traveling Parenting Moments…

This past weekend we attended our first regional event for our LPA district. While I love eating out, when you’re paying for everything away from home, while still paying for your home (wouldn’t it be cool to suspend your mortgage if you weren’t there?!), that can be a weighty financial burden. So, we did what anyone would do. We packed food and gift certificates- which we used to treat ourselves to dinner!

In our cooler we had:

#aisforadelaide #vacationisntaboutgoingbroke

This stash, plus a stop for a bunch of bananas, got us through 2 breakfasts, a lunch and snack times without hesitation. We ended up treating ourselves to coffee (because we are coffee snobs) as well as a special baked good from a local bakery, Plum Beach Bakery. For $1, their glorified dough boy left Dave and I stuffed! So, while we can’t control the price of fuel or tolls, we can control our food costs with some planning!

Best tip: PACK WATER BOTTLES! Even when you’re traveling and cannot bring a cooler of food (say on an airplane), you can always bring water bottles for everyone in the family. For this trip, we brought enough water so that we would not have to drink from the tap, but when we fly, we bring empty Nalgene and CamelBacks so we know that we can fill them up at a bar (just remember to tip the tender) and board with it!

And what else do we struggle with as parents who want to travel?  Ahh… The dreaded hotel room-with-a-child situation. Addie too big to sleep in a Pack n’ Play and the hotel cribs are often not full size, so those are a no-go, too. A big bed? By herself? No rails? No thanks.

But wait!
Those decorative pillows are not for naught! They are for bed rails!

From The Sea Crest Hotel website (Falmouth, MA)

From The Sea Crest Hotel website (Falmouth, MA)

Using the large cylindrical pillows under the fitted sheet, I created bumpers along the sides of the bed. Addie was able to sleep by herself, safely, while Dave and I watched over her and cringed each time she kicked… knowing it would have been his face, or my back, had we not put what we had at hand to good use. Sharing a bed with your child is a beautiful thing- until the day your child becomes a smallest bucking bronco one has ever seen.

#aisforadelaide #lifehack #hotelhack #travelhack

She only looks innocent. Don’t let her smile fool you.

#aisforadelaide #seacresthotel #lifehack

What travel-hacks have made your life easier? Share below!!!

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Because Normal isn’t What You Think…

My life is different from your life. It’s got nothing to do with you, your child or your relationship status. Actually, it does. That’s it exactly.

We are different.

Do you need me to prove it? I went to private school. My pinkies are curved. I only have one living parent. I love my step-father. I have 4 siblings. I am a dog person. I prefer reading a book to reading on an e-reader. I have blue eyes. I grew up in suburban Philadelphia. I haven’t gotten a haircut in over a year and a half. Ice hockey is a way of life. I enjoy running. I own a life insurance policy. I think water is delicious. I never want to own another car besides a Subaru.

Did  you get all that?

We’re not the same.

But that’s ok.

Somewhere along the lines, someone thought that someone like me could be considered normal. Here’s a few things that you may not know.

I have flat feet. I’m above  average height for a female at 5’8′. My father died while myself, my mother and sister were holding him. I’ve suffered from depression. I  don’t love where I live. I have a child with special needs. I’m addicted to social media (but I won’t be detoxing). I have over 30 tattoos and a permanent piercing. I’ve totaled more cars than most people own in a lifetime. I’ve miscarried. I have anger outbursts that I’ve worked almost 30 years to control and still struggle with.

But, someone thinks I’m normal.

I know this because I’ve been asked how someone normal has a special baby. Well, here’s how it goes. Two normals get together- you know, in the between the sheets, don’t tell mom kind-of-way. A baby grows. It’s an amazing baby. The parents, those normals I told you about, have dreams and hopes for this baby. Then the baby is born, and it’s so much different than the normals expected. It’s not better, or worse. It’s different. This child is, GASP, normal too. Sure he or she is different, but all humans differ. If you believe that there are two people alike, you’re only fooling yourself. All children are special. They are all unique- even those really strange ones like my brothers who are identical twins. Somehow those kids, 21 years later, are night and day… both amazing, handsome, special kids headed in two different directions.

So what’s normal? How the hell do I know?

I’m a tall woman, with crooked fingers and flat feet. I’ve encountered death and loss the likes I don’t wish on my enemies (do I have those?). I’m married, but is that even a cool thing to be anymore? I live with  OCD issues paired with insomnia (no, I don’t consider any part of my life to be suffering from…).  My normal husband? He’s a 37 year old who made a career change at 35. He went from a single guy-musician-business owner, to husband-solely-supporting a family of 3 (soon to be 4!) in under 5 years. He’s not very tall, or dark, but he’s really handsome. His nose is big and his heart  is huge. His normal-self didn’t own a car for 6 years. In fact, he’s so normal that he chose me to marry (as described, I’m as normal as they come, no?).

Normal? It’s not what you think.

What are you? What am I? What is Dave? And Addie?
Well… we’re all human. Let’s act accordingly.

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Mother

It’s such a simple word.

moth·er
ˈməT͟Hər/
noun
noun: mother; plural noun: mothers
  1. a woman in relation to a child or children to whom she has given birth

verb
verb: mother; 3rd person present: mothers; past tense: mothered; past participle: mothered; gerund or present participle: mothering; noun: mothering

  1. bring up (a child) with care and affection.
    “the art of mothering”

This is how a book of words, all the words we recognize in the English language, defines the most important woman in my life.

So how would I describe my mother in less than 1,00 words?

She’s a rock when the whole world is on a roll. She’s the person that took responsibility over the lives of 4 other humans when her partner in crime, my father, passed away. She is what a pillar of strength hopes to embody to define itself. She is power. Beauty. Courage.

But she never had to try to be these things. That’s the most amazing part. Life never happened to her. She happened to life.

I grew up hearing: no one makes you feel a certain way.

Which is why I do not choose the love I have for her. It’s just there. It’s all in my heart and soul. It spills out as I bounce questions off her, call for advice or press the right buttons so Addie can hear her Mima’s voice.

I cannot help but love where my heartbeat first originated. I love you, Mom.

Happy birthday.

xo,
FTN

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Marvelous Monday

What a wonderful weekend- jammed packed with all I am thankful for and all things dwarfism! I have mentioned LPA about a million times, and all the support they offer to the LP community, but there is so much more than that.

There are lifelong memories made by friends who see each other a few times a year. Parents who lament all the silly things that we get that no one else truly does. Not life-altering stuff, but finding shoes that fit, are cool and also comfy. Why moving a faucet can make life easier for your child. How to hem jeans. It’s the same old parenting things we all think about, but rarely do we encounter so many seemingly minuscule things over and over and over.

The best part? When Addie gets into a large group of kids, there are no worries because this community is watching over her- everyone.

This mama may be suffering from serious pregnancy hormones, but when Jackie and Avery (two fabulous young ladies) took Addie’s hands and walked her to their dance circle complete with other girls, and encouraged her to dance, laughed with her and never let her out of their sight, I walked away, took my seat, gripped a cup of ice water and swallowed my tears. My face was hot. My body felt cold.

#aisforadelaide #firstdance #lparegional #2014

My daughter already has an amazing life.

I watched what her Spring and Fall would bring each year, as our District regionals pass by. I saw middle school dances and girlie laughter about things that us parents would just never understand. As I sipped my water, surrounded by women I’ve grown to love in our brief, but powerful 21 months as LPA members, we laughed at my verge of crying.

#aisforadelaide #ladiesnight #LPAspringregional2014

I have an amazing life.

These moments are not forever. We have our struggles. We have some of the happiest moments of our lives without the LPA, or anything related to dwarfism. Being little, or big, or average does not define us. Having such fabulous friends, regardless of distance, giving my child the opportunity to live her life and being guided by those around me. That defines me. There is nothing like knowing that your life changes shape when you let go of the reigns and just live.

With $100 in our pocket and a cooler full of fruit, bread, peanut butter and tuna, we went to Cape Cod. It was our first regional with our LPA district. We got to ask questions. We got to answer a few. I shared a conversation with men and women. Some were my height, some were not. But the conversations were the same. Our kids were being crazy, they all needed to sleep, we all enjoyed the sunset at the banquet, our clothes seemed to be getting tighter as the New England winter ceases to end. I joked with my ladies about this and that. We all ragged on each other, shared hugs, high-fived the  kids.

Being members of the LPA has allowed us to NOT define our family by dwarfism, but to learn in a safe, well educated environment for ourselves, our daughter (and future baby!) and those who will learn from us. To balance our lives between doctors and normalcy, because at the end of each day, I am doing the same as any parent… reading 102 books before bed, watching my child guzzle more water than they consumed the entire day and praying they don’t spring a leak in the night, kissing her cheeks and watching the monitor (sure, I’m also listening for snores and leg movements, but that’s neither here nor there). Addie? She’s just like your child. And me? I’m just like you. Tired, stressed and loving every minute of this crazy, fast-paced thing they call Parenting.

#aisforadelaide #swimming #capecop #seacresthotel #lpaspringregional2014

And my random  of the week? If you missed it before, don’t forget to check out this awesome video below <3 <3 <3 (Yes… I’m a bit excited to share after holding it in for 13 weeks!!!!!)

Happy Monday, Reader!!!

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Marvelous Monday

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

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

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

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

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

*  *  *

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

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

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

*  *  *

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

This is it #aisforadelaideblog

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Filled with Thanks

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