I believe that You’re here for a reason + i’m so happy that you are. and even if you’re not here to stay, i’m happy the universe allowed your soul to stop by. if you need to hear it today, remember, you’ve already made it through 100% of your hardest days. you learn something through every single obstacle + you will always, always, always come out stronger than you were yesterday, as long as you realize that you have a purpose.

you need to keep moving on, darling, or you’ll miss the train to bigger things in life than this.
you absolutely, positively got this, my friend.
and you are never alone.

 

click here to hire Shelby Resler Photography

click here to hire Shelby Resler Photography

photography

From the beginning of your journey together to growing your family, I'd love to tell your story for you! My heart is the happiest when I know that I'm able to capture these special moments for others, as this is where my passion and calling in life began. There is so much more to life if you just look a little deeper and I would truly love to help you see and cherish that from a different perspective.

click here to go to Owen’s Story

click here to go to Owen’s Story

OWEN’s story

Thank you for being here to read about Owen’s Story. With a little help from you, I know that we will be able to make a difference in the world. It may not be within the time that we need in Owen’s life, but everything takes time. And we, as a family living with a rare disease in our home, are never giving up hope. (read more below)

click here to go to The Women Warriors Project

click here to go to The Women Warriors Project

the women warriors project

I have a huge goal and passion to help encourage my women warriors to find the purpose out of their pain in life. There is definitely something new + exciting happening for this block! We are still working on some things so please check back here soon!

click here to visit the online store

click here to visit the online store

 
 

Details

Thank you for checking out our online store!

This space is dedicated from myself to everyone else in our home, to encourage my babies and even my husband, to always find their creativity, but especially through the harder times. We can help so many people through our individual stories in life and using our creative minds to find other ways to help. Each one of you has something different that you can offer. Always. And please never forget that I love you for always trying to make a difference in someone else’s life.

Items here will come and go and will not be guaranteed to stay for a period of time. Please read why we’ve started this.

We’ve gone back and forth since the time we moved into our home on whether this was going to be our forever home or if we wanted to build someday, as that was always kind of our plan together. But as of right now, after going over our list, we are deciding that staying where we are right now may be our best choice and where our heart is. We’ve always wanted land, a place for the kids and the dogs to run and a sense of peace watching the sunsets out of a kitchen window with a view. And maybe someday in our lifetime we will get to enjoy that, but we have a happy home on the corner of our main road in town that we’ve made ours. We are physically surrounded by people who know us and care about us. When you receive any kind of diagnosis, and especially one with death involved, you surround yourself with people that matter most in your life to help keep you safe, to keep you happy and to always remind you to keep going. As our tribe is always still forming, we have ‘our people’ right here where we are and don’t really feel the need to leave. Owen started his school years here, he has teachers, therapists, and peers his age who have grown with him and know him and love him for who he is. There are friends of ours who have become more like family and our other friends and family are still close enough to be with us when needed. I’m secretly afraid that if we move somewhere to have our land or original dream, we won’t be able to take our people and the physical closeness we have with us. It hurts my heart to think that we wouldn’t be able to see them, talk to them or hug them as much and I know 100% that we will need so many of you in the harder days to come.


We want this space, to not only be for Owen and not only for us as a family, but as a community. Living in a small town right outside of a bigger place we’ve always called ‘home,’ from those who care and love, we have just that. A community. It’s important for us to share how people are helping us throughout this time we have and how or what we are able to do because of all of YOU that are helping. I know that sometimes it’s not always easy to give the way that you’d like to, but this is a way that I knew we could give back to you and allow you to see first hand what your donations are going toward. We, as a family, want to be able to donate to help find treatment, clinical trials, anything we can to help. Owen is too old for trials and such for this disease, at this time there isn’t anything available for us. But we have hope that someday these babies will have some kind of treatments or cures to save their lives. Our shop is dedicated to Owen’s medical finances, medical equipment over time and small home remodels or accommodations that will also need to be done to meet Owen’s needs. Bathroom remodels with an open floor plan to meet medical needs, a bedroom addition on the main floor of our home and a ramp built outside for him are some examples.


I want to remind you that we have a long road ahead of us. This isn’t something we need done tomorrow or next month, but we do want to do what we need to to accommodate Owen correctly and sooner rather than later. We’ve been in and out of hospitals since he was 1.5 years old trying to figure out this diagnosis and it has been draining on so many personal levels. Now that we finally have our answer, we would like to just LIVE and enjoy our life together the best we can without so much of the unknown hanging above our heads. We don’t want to wait until the last minute or feel rushed when making these accommodations, and I definitely didn’t want to wait until the last minute or ever have you feel like we don’t feel the love and importance that you guys give to our family. We appreciate you being here with us through our journey in any way. Word of mouth travels fast, and I know wholeheartedly that you all can help spread the word of our Owen and help spread awareness right here beside us every single day.

Thank you for all of your continued support, now and in the future. I wish I could hug every single one of you.

xx


 
 

What are people saying?

 

"It's the moments you don't even know you are going to miss one day. These are the beautiful moments Shelby is able to capture. Each picture evokes emotions and it stirs a memory. We are so grateful that we have found Shelby to document our journey in life!"

"Our session felt more like hanging out with a friend at the park than posing for family photos, the result was beautiful candid moments that captured who our family is. I have the pictures framed in almost every room in our house and get comments about how much people love them almost every time someone comes over. Thanks for putting your whole heart into what you do!"

"We live in Florida and Shelby photographs our family every time we visit the Quad Cities. We love her work so much that we invited her to come to Florida! She's truly and incredibly talented. She captures so much emotion in her pictures and every picture has a story. We are so glad we met her a few years ago - she's such a joy to work with."


  • "My experience with Shelby has been the best I have ever had. After I shared our heart break of 4 miscarriages before we had Lucy, she decided to come back and make something extra special for us after our newborn shoot with her. To this day, it brings tears to my eyes and it means so much to me. After our son Jack was born we had her come for newborn photos again and I was so worried about how Lucy would be during them. She was absolutely amazing with her and once again made my heart melt with what she captured. She is very gentle, compassionate and caring."

"I mean...... she brought me Starbucks as a mommy pick me up for our session! Who does that? Only the sweetest person ever. I treasure her as a photographer because she loves what she does and it shows how great she is with children through all her photos."

“There’s no one I’d rather have document all the important moments in life than Shelby! She’s been there for anniversaries, pregnancies and new babies. Her work is true art - going far beyond the “click and smile” posed pictures. She’s captured what our life is really like in that moment. A session with Shelby is easy and comfortable even for the most camera shy husband! Kids and dogs love her too!”

“We have been lucky enough to have Shelby capture our yearly pictures of our children since the birth of our son. Our daughter had just turned three when our son was born and was very camera shy. As we were busy putting the finishing touches on our home and ourselves, Shelby quietly went into Ellie's room with her and they started to play. Ellie was completely at ease and relaxed with Shelby and she was able to capture some truly remarkable photos of Ellie and our new baby. We chose to have Shelby return when our children turned 4 and 1 and again at 5 and 2 because she is truly a baby whisperer. She has such a calming presence and is able to just "be" with my family and capture all of the precious moments we share together. Her relaxed style allows my children's personalities to come through in her art. (Although we probably should have warned her that when our son puts his football helmet on, she will need to be ready to be tackled!) I love the detail photos she captures such as their hands, feet, and eyes since I'm able to look back and remember their pudgy little baby hands. We are forever greatly for the moments that Shelby has captured for us.”

“I am so incredibly glad that I had Shelby by my side during our birth story. She even held my hand when I needed! Knowing how the birth process is and remembering how I wasn’t able to mentally be a part of it as I would have liked to, looking back on all of our memories from that day and it is something that I’m beyond grateful for. You don’t get those moments back and I wish I would have had her there for all of my children’s births. I highly recommend her to be there for you in your birth journey.”

 
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OWEN’S STORY

 

Thank you for being here to read about Owen’s Story. With a little help from you, I know that we will be able to make a difference in the world. It may not be within the time that we need in Owen’s life, but everything takes time. And we, as a family living with a rare disease in our home, are never giving up hope.

Below is a little peek into Owen’s Story. Our ‘family blog’ located in the navigation bar at the top of this website as well as the ‘educate + advocate’ page, will be two places where you can keep up to date with Owen and also become more knowledgeable about this disease and what to expect through his lifetime. If you have some time in your days, please take some time to read more about it and join along in our village of support. It does ‘take a village,’ after all, and we are so appreciative of every single one of you who mentions Owen’s Story to another friend, to not only help support him, but for all of these other children who need the love as well.

———————————

After six years of his life searching for a diagnosis, we are here. About a month before his 8th birthday. We got the phone call on Wednesday May 2, 2018 at 9:40am.

“It’s confirmed. We’ve received a positive result and there is no need for any further testing to be done. This is your final diagnosis.”

Those words, ‘This is your final diagnosis.’ Final. Diagnosis. Those are the words I’ve been waiting to hear for six whole years. My heart sank while an entire load of weight lifted off of my shoulders. I felt like I was flying. But only for a moment...

Owen was a healthy babe at birth, weighing 7 pounds, 2 ounces and was 19.5 inches long. He was born via c-section and we didn’t have any complications. He met all of his milestones as a baby and we soaked in every little coo and smile that he gave. He started sitting up at 6 months old and sat on that chunky bottom until 13 months until he decided he was ready to crawl for a week and then take off walking. It was around that time when we started noticing some changes. He said some basic words around one year old, ‘mama, dada, nana, book, duck...’ but then he just stopped all together around 18 months for about a 9 month period. He started to moan or grunt and point to things that he wanted, he would get frustrated a little quicker, it didn’t seem as easy for him to communicate but he still showed expression and enthusiasm. He started chatting again a little over 2 years old and it almost felt like he picked up where he left off. Life was good and happy and it was like nothing had ever happened. Something to me, however, just didn’t feel ‘right.’ I’ve been around children my whole life and I knew right then it was time for me to look into things.

We started early childhood intervention with speech and occupational therapy from ages of 2-3, which helped him tremendously in so many ways! He went to preschool for an extra year before heading off to Kindergarten as our big boy, with an IEP we created for him to be able to have a secure and safe future based on the extra help he was receiving with speech and occupational therapy at the time. Since then, we’ve been in and out of numerous hospitals hearing one answer, and then ruling it out and replacing it with another time after time. I felt like it was a joke. He couldn’t even go to one hospital for testing because he was ‘too old.’ Doctors kept telling me to ‘keep allowing him to develop and grow at his own pace’ and in my head, I knew that ‘he was getting too old now, he’s passed this milestone and this stage, doing that would only get him further behind...’ So, I became our own case worker. Needless to say, I’m completely exhausted.

I made all the phone calls, set up all the meetings, ordered more labs and attended conferences and did more research. As he grew, he showed more strong autistic characteristics. He lined up his toys, he flapped his arms, he had sudden meltdowns, he was repetitive, he showed signs of sensory issues, he obsessed over specific things daily, we started visual lists to get us through the day, ‘and then what?’ And so so many more... The autism spectrum is so broad and it was something I wanted to look deeper into.

A friend of mine knew that I’ve been working so hard to find out some answers and referred us to a different city, more recently, in hopes to help us work toward getting an official diagnosis. Again, we had months of travels and testing and labs and ultrasounds. They ruled out Autism. Again. Because he can communicate and passed all of the ‘tests.’

Because my son can SPEAK? That wasn’t good enough for me. I walked out of there feeling so frustrated. I thought we were finally there, I really did. I had such good vibes and feelings during the whole process, but walked out with, what felt like, nothing. He had a team of people there that worked with him on coming up with a diagnosis. A speech pathologist, occupational therapist, psychologist, pediatrician, I just knew there had to be more. Something. The pediatrician had been the best one we’ve had by our side since he was born and I knew I needed to stay by him. He’s the one who thought of questions and ordered tests that no one had mentioned to me before. I remember feeling I was just so excited. He scheduled lab work that showed he had higher liver enzymes, so we had an ultrasound to check and make sure his liver was okay. It looked normal. He ordered an MRI to check out his brain (I’ve been wanting this so bad since he was younger) which then came back abnormal. That’s when he sent us to a specialist out of town to get a sleep study ordered and to meet with a neurologist. For the first time in my life as a mom, I felt like we were truly going to be getting our answers through all of this.

So here we were, another hospital, another doctor. And as much as I was dreading it, I knew I was never going to give up. We sat and chatted about family history (for the 1000th time), they measured him, the neurologist gave him a short checkup, we talked about what we’ve been through and what we’ve noticed and how he’s growing. He kept glancing at him, noticing his characteristics and finally asked, “...they really did rule out Autism?” Yes. They did. He was willing to look a little deeper and help. We started talking about the sleep study that was ordered, how he is so restless in his sleep and how I witnessed his one and only seizure a few weeks prior around his bedtime. He immediately ordered up for an EEG and we had that scheduled as soon as possible.

After the EEG was over, the tech said to me, “...if doctor thinks it’s emergent to call you, then he will call you today or tomorrow. Otherwise, he will give you a call in 3-4 days.” Umm. ‘If doctor thinks that it’s emergent?!’ I took that as a sign...

The nurse called me the very next day. She said they suspected epilepsy and we needed to start him on some medication to help stabilize them right away. I was sort of expecting it, but there is just something about you actually hearing it that hits you like a bag of bricks in the face. When we met with the neurologist next, he said that he was suspecting a certain diagnosis and gave us papers to go home with. With all of the appointments, we had had before this, I didn’t want to read anything else until I knew there was a final answer. It’s just exhausting to try and keep up otherwise. He ended up having a reaction to the first meds and is now on the second one we’ve chosen for the seizures. We did genetic testing that same day to narrow down the answer. His dad and myself gave blood and Owen did his own set of labs along with a urine sample. We still kept up with the mentality of ‘Let’s do this.’

We got the phone call exactly one week later. “It’s confirmed. We’ve received a positive result and there is no need for any further testing to be done. This is your final diagnosis.” He explained things a little more and then said, “Have you read the papers that I gave you? If you have not, please take time to read them and you may call me back whenever you need with any other questions that you have. Normally it’s a 6 month wait, but I’ve talked to the Genetics doctor and he is able to get you in tomorrow if you can make it back up here to meet with him.”

We hadn’t read the papers...

I remember feeling so HAPPY and EXCITED that we had the ANSWER! My husband grabbed the stack of papers and read the first page and says to me, “NO. You’re not going to want to read this.” I read it and immediately curled up in a bawl and didn’t move. My husband called all of our family to meet that same night so we could talk to them. ‘This can’t be happening, this can’t be happening, WHY is this happening? I’ve worked my entire life as a mama finding this answer, this CAN’T be it!!’

On Wednesday May 2, 2018 we found out that our boy has Sanfilippo Syndrome: MPS IIIA. It’s a very rare, genetic childhood disease that is terminal.

As of right now, there is no cure or treatment for this disease or any trials available at this time. He was born without a vital enzyme that breaks down complex carbohydrates in the cells. Over time, the waste product will build up and cause brain damage. Without a treatment or cure, children lose their ability to walk, talk and feed themselves. They often lose their hearing and have seizures. The typical life expectancy is between 10 and 20 years of age. We are absolutely devastated and completely heartbroken. He won’t be leaving us tomorrow, but with this disease, it is hard to gauge on how quickly things will start to regress. Owen is a happy, extremely loving and caring soul. He does not realize that he is different from his peers. He loves swimming and soon we will start some therapeutic horseback riding. He receives Special Education at school, speech, OT and a life skills therapy. He has difficulty with developing and understanding learning skills and speech. As of right now, he continues to be able to walk, although he gets tired quickly due to his lower muscle tone, and can still talk and feed himself. He is living through it every day, although he doesn’t understand anything that is going on and I’m thankful SO much for the innocence in his heart for that. All we are asking is to pray for him to happily get through each day the best that he can. We know that his brain damage is slowly always occurring and are, and always have been, blessed to have him and want our sweet boy to live life with us to its fullest.

We plan to use Owen’s Story page on Facebook as well as our family blog here to keep our family and friends updated on Owen’s progress and accomplishments. We have several fundraising events in the future that we are planning out and will be updating you on those also, as we hope to see so many of you there with us!

Thank you so much for being here with us and to those of you who have helped Owen become successful so far in all aspects of his life. We can’t wait to share all kinds of his memories and updates with you here by our side. xx

If you’d like to donate directly to Owen’s Story, you can click here.

Please navigate to the other pages if you’d like to learn more on Sanfilippo Syndrome.

 

HEY, GIRL HEY!

 

I’m SO happy that you are here! (BIG HUG)

w e l c o m e, l o v e.
In so many different ways, you are here for a reason. I’m so incredibly blessed and excited to be welcoming you with open arms into a space where there is connection for you, a tribe for you, advice for you, encouragement for you, just so much. A place where you will find out that you are not alone, as much as you may feel that you are in your days. And you never will be. It’s a place of comfort, where you can connect, hug, cry, laugh, tell your story, but most of all…
be yourself.
Because there is no other you, after all.

I’ve created this space just for us. Encouraging you to put your purpose over the pain and know that whatever it is that you are going through, it truly is making you stronger. (believe it or not, ugh, I knowww, girl…I KNOW.) You are slowly but surely, it seems, finding all of the truth in the strength to be all that you are capable to be. You are becoming nothing less than the person and all that you have been created to be.

I truly have a lot that I want to say to you, sweet friend, and I will get to it all. Eventually. But for now, we are continuing to build our community every single day, a strong one. And it’s a LOT bigger than any of us could imagine! Have you ever been in a giant room full of women who are strangers? Or at least that’s what you may think we are when we haven’t met yet, strangers… But in fact, we are so much more than that!
I definitely need YOU to be a part of this with me!


You see, as warriors, we all go through the same things in life, really. As much as you may have been through something different than the ‘struggle’ of the living warrior next to you, we all go through the same process that gets us from the beginning to the end while still being able to live through everything in between. There is a process for denial, grief, acceptance, advocacy, etc. You see, whatever it is that you are going through, we all still tend to go through the same process. And we will do this together, as again, you are not alone.

We, as women, need to keep lifting each other up. We have so much power, especially when we come together! And we need to remember that we all have a story. When we see each other out and about at the grocery store, in the carpool line at school, anywhere in public, whether our children are with us or whether we are there alone, we must remember that as quick as it is to judge someone, we don’t know that woman, we don’t know their story. They absolutely may be going through something life changing, heartbreaking, breathtaking, something taking over her e n t i r e life, swallowing her up whole. And, you know what? Maybe she just needs a freaking hug. I know I’ve been there. I know I still have days where a hug sounds like a dream to me.

There will be encouraging blog posts on this, connections within this, gatherings and also events for this. Yes, gatherings + events! So stay close and check back here soon, as there will be a page at the top in the menu just for you.

We need you, but most of all, you need you.
Invest in yourself + don’t even think about giving up.

Make it through another single day with me, warrior.
Just take one day at a time.
xx

 

 
A reminder for you, written by my boy living with the terminal childhood disease of Sanfilippo Syndrome. One day he will not be able to walk, talk, eat, or write. Some children, unfortunately don’t get a chance to do some of these things at all. This is his handwriting that he traced since he is not able to write on his own, a reminder for you that we will all try our best to take it ONE DAY AT A TIME.  -Owen’s Story (Age:8 2018)

A reminder for you, written by my boy living with the terminal childhood disease of Sanfilippo Syndrome. One day he will not be able to walk, talk, eat, or write. Some children, unfortunately don’t get a chance to do some of these things at all. This is his handwriting that he traced since he is not able to write on his own, a reminder for you that we will all try our best to take it ONE DAY AT A TIME.

-Owen’s Story (Age:8 2018)

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Thank you so much for all of your support!