Happy Holidays!

I just updated the Shutter Sweet blog with a post and wanted to share with you a few thoughts and updates as we approach the holidays and enter a new year.

This past month, I've been able to help out with a non-profit organization called Help-Portrait where I was able to donate my time and talent to help those less fortunate to give them portraits for Christmas. Last Sunday, I was able to help another family with their holiday portraits, but this story is a little more personal...

I learned about the Hill family through our church. Kevin, the dad of two young children and wife to Rachel, was diagnosed with stage 4 melanoma cancer this past year. Some moms put together a care package for them and delivered it to the hospital as they were going through one of their treatments.

I knew I wanted to help, but waited to introduce myself as I knew sometimes the support could come in waves and there might be times that they needed some help later on... After a few messages to the moms group at our church, I introduced myself to Rachel and told her about our family battle with skin cancer and offered to help any time and in any way I could.

Right after I was born, my mom had a cancerous melanoma that had to be cut out of her back - no joke, it was a huge portion of her back they removed before they were able to get it all out. A lot of my family on my mom's side has dealt with cancerous moles. My first pre-cancerous mole was in 8th grade when I noticed a mole on my hand was changing shape and pointed it out to my mom.  I had it biopsied and had to get a little bit more cut out with a few stitches since they didn't get it all the first time. Since then, I have had over 40 pre-cancerous moles removed and over 15 wide-excisions (bigger portions removed with stitches of various sizes). Over 10 of the pre-cancerous moles and three of those wide-excisions have taken place in the last month, crazy, I know. I wouldn't describe myself as a mole-covered person, but the ones I do have turn deadly and new ones grow every year as more are removed.

A brief lesson in moles: When a mole is cut off and sent to the lab for a biopsy, it can come back benign (nothing is wrong with it) or a-typical (abnormal cells that could develop into cancer if left alone). There are varying degrees of a-typia from mild, moderate and severe. Most of mine are mild to moderate because I catch them so early, but a few (and one this past month) have been severe, which is the last stage before it turns into cancer. All of the moderate to severe ones I end up having a wide-exicision to remove more. There are different types of skin cancer as well and named after the type of cell they arise from (like melanoma, basal-cell and squamous cell). Melanoma is known for being the most deadly and usually take the form of flat dark moles. Don't google pictures because you will get the most extreme pictures and they are not helpful. Just go to the dermatologist for a skin exam and they will let you know if there is anything to be concerned about.

Kevin had a mole on his face for a long time and never thought anything about it. He accidentally cut it shaving one day and it wouldn't stop bleeding so he went to get it checked out and that's how he found out he had skin cancer. It had already started to spread so they cut a major portion of his face and neck to remove as much as they could, but it was too late. He's gone through numerous treatments and procedures to try and fight it. When I was talking to him about it, he told me that he wish his general doctor would have mentioned getting a skin exam in his annual physical. As a male, he had never been to the dermatologist and didn't even think to go for a "check up" when he didn't have a history of anything.

Kevin and his family have been fighting this thing full force since they found out and it's been exhausting. I empathize with them because I know how draining it is to fight with everything you have despite the grim statistics. I know what it is like to look someone you love in the face and know that you might not have another day with them. I know what it is like to deal with medical insurance, bills, other crappy situations that all seem to add up and make you feel like throwing in the towel. I also know what it is like to have an amazing community surround you and help you carry the burden. I know what it is like to rely on your faith and keep hope to survive.

Thankfully, Kevin and Rachel go to the same church we do and have an amazing support system in place through their neighborhood in Atlanta and family as well. This past weekend I was able to photograph them for a family session and it was amazing. It was cold, rainy and traffic put us an hour behind schedule so we were losing our light, but it was so perfect for their story. We had fun despite the conditions and ended up with some great shots! Below is one of my favorites... The rest are on the Shutter Sweet Photography blog along with more of their story, which you can also read in depth on their blog here.

After the photo shoot, I was thinking about hope. Hope usually arises out of dark places. For me, hope has been in the forefront of my mind as I think about advent and the coming of Christ. I have hope that there is purpose to this life and more to experience after my body dies. I have hope that there is good that comes out of the evil and suffering around us. The death and darkness of this world can be overwhelming sometimes, and is recognized after tragedy and loss like what was experienced last weekend in Connecticut that was felt around the world. I am so glad we were made for more and my soul knows it or else I would be a much more depressed and less functional person! 

As the holidays approach, I've been trying to take time to sit and be still. Forcing myself to quiet my mind and not to run to my email as soon as my feet hit the floor has been a challenge, but one I hope to turn into a daily practice. I've taken time to be thankful and re-focus on what's important - not the busy hustle of the holidays, but how I can celebrate with others in their joys and share in the burdens of others this holiday season and love those around me.

I know a lot of families who are suffering during this season. One SMA child lost his dad in a car accident, while several more SMA children have passed away in the last month not to mention the families who lost their children in the school shooting and other tragedies taking place around the world. Many of us have welcomed the reminder that we're not guaranteed another day and have held the ones we love a little closer the past few weeks. I hope that the holiday seasons are spent with the people you love. My hope is that we can stop focusing on presents and return back to the season of hope and love - hope in a savior that humbly came into this world as an example to us all on how to love unconditionally. Hope in a God who loves us so much that he was willing to come into this world of sin to bear ALL of our burdens so that we would be restored. Hope in the Lord who grieves with us at the grave of loved ones, celebrates with us in times of joy and comforts us in times of need.

Peace, Comfort and Joy to you and yours this holiday season wherever you may find yourself. 

Merry Christmas and Happy New Year!

Eucharistia

Eucharistia - is greek for Thanksgiving. When Kyle and I went to Greece last year in an attempt to get away and re-focus on our relationship, we learned a variation of this word very quickly as we would say "thank you" for gifts given and kind words to the people we met along our journey through Greece. I recently re-visited this word when reading the book One Thousand Gifts... a book about being thankful in all circumstances, even the tough ones.

For me, one of the tough ones was this past Monday, when I would have been celebrating my sweet little girl turning 3 years old. I woke up to a phone call from the dermatologist office letting me know that the two biopsies they took off last week were in fact pre-cancerous (again). I was still healing from a wide excision from another pre-cancerous mole and they let me know that I would have to have another one. As I hung up, I saw the date on my phone and just burst into tears.

I was hoping on the 19th, I would be able to wake up and give thanks and stay positive. However, it was quite the opposite. I wanted to stay in bed all day. I wanted Kyle to love me and tell me it was all going to be okay, but he was long gone to work. I wanted chocolate and flowers. I wanted to see my little girl and celebrate her life, not dwell in her death. I just wanted to crawl in a hole and let the day pass away. Not knowing what else to do, and feeling so miserable, I sent out a prayer request to the moms at our church which went something like this,

"I could really use some prayer today. I am feeling really broken and alone. Today would have been Skylar's 3rd Birthday. Birthdays were always a big deal in my family and were something we celebrated for days, which makes it even harder to face my daughter's birthday without her here. It should be a day of fun, love and togetherness. Right now I am depressed, alone and pretty full of tears.  

I was supposed to have a meeting with my counselor this afternoon and she cancelled on me (apparently she sent me an email a few days ago but I didn't find out until this morning when I sent her a text saying I was really looking forward to our session). I got a phone call this morning that I am going to have to have another wide excision because another mole came back pre-cancerous on my shoulder (in a really sensitive spot near my armpit so it's going to be a really sensitive recovery as far as movement goes and not ripping stitches). I also have to have a colonoscopy at the beginning of december to rule out Chron's disease for GI issues. 

I'm thankful that I've been able to catch everything early, but it is just exhausting after everything I have been through with Skylar. I know my body wasn't created to live forever in this world - and obviously Skylar's wasn't either, but it still sucks. I just feel like the rest of my life is going to be full of suffering (my own and others around me) and it makes my heart heavy. I know that the pain of losing Skylar will never go away and it's not going to get better with time. I'm starting to realize that I'll always have the pain, but it's just a matter of learning to let joy into the same space. I'm not sure if anyone has seen The Secret Life of Bees, but I feel like Miss May. Maybe I need to build a wall... 

Anyway, thanks for listening and for your prayers that God would bring love into my life today as well as peace and comfort."

I didn't have any words left and my heart was so broken, I couldn't even pray other than just letting God know where I was and what I was feeling. In those times, it's nice to have other people to pray for you. Within minutes, whether it was my own confession that I had no strength to function on my own or the prayers of many lifting me up, I felt lighter and able to function.

I managed to get out of bed and placed some holiday card orders for clients and worked on editing for Shutter Sweet Photography. For my birthday (in August), Kyle bought me some clays and promised to take me shooting for the first time ever once we found a place where we could... He called me to let me know that he was going to take a break from work and we were going to go shoot some shotguns with friends later in the day. It was a much needed break and a breath of fresh air - I was so relieved to have someone around me and get out of the house.

I can honestly say I had fun. My heart was still sad, but I was able to be thankful for God's creation, for old and new friends, for encouraging messages that moms from our church were sending me, for family, for my relationship with Kyle, the ability to breathe, for my muscles still functioning, and the list goes on. With that thankfulness, the weight lifted.

Today I am thankful that I still have life. I hope you are too. It's hard to give thanks in tough circumstances and it's even hard to maintain thankfulness through daily stresses and life events. For me, I've found that it's the only way to heal. The only way to get past your own suffering and recognize that things can always be worse. Just as Ann Voskamp explains in the book One Thousand Gifts, I see God's gifts all around me and I try to soak them in as much as I can. My hope is that you can see the gifts around you and be thankful for them.

 Peace and HAPPY THANKSGIVING to you!!!

A Month of Travels...

The month of September was full of travels and I can't believe October has already come and gone! This post is full of photos so be sure to click on them to see them full size!

We started on August 31 (my birthday) and boarded a plane with a wonderful couple we had never met before to photograph their destination wedding in the Bahamas. I love my job :)

The couple found my photography website online and after interviewing and several in depth phone calls, the bride let me know she hired us and we were going on a three-day cruise to the Bahamas, leaving from Miami. The entire group of family and friends were fabulous and a joy to be around. Kyle got to go with me as my second shooter (he's starting a new photography website under the name Blue Wall Photography - more for landscapes). Although I have a handful of people I like to second shoot with, I let the bride decide and I was glad she picked Kyle!

We returned on the 4th of September, and a week later, we turned around and boarded a plane to head in the other direction... All the way to Maine to visit Matt (Kyle's brother).  It was an amazing trip and really wonderful to visit Maine for the first time. Kyle and I enjoyed hanging out with Matt and all of his cool grad school friends in Orono. We were able to cram a lot into our 9 day visit, including a backpacking trip along the Cutler coast (stopping in the northeastern most gift shop in the US of course), lunch in Lubec, hiking in Acadia for two days (including climbing Mount Champlain), dinner in Bar Harbor, touring University of Maine's campus, hanging out in Bangor, lobstering in Blue Hill (catching and cooking our very first lobster dinner!), chillin' at Popham beach and Kyle got to climb the highest peak with his brother - Mount Khatadin. I have lots of stories! Just ask if you want to know more...

We just got the tail end of the warm weather in Maine and left just as the leaves were starting to change. I was sad to leave so soon because I could tell the leaves were going to be a brilliant display of color, but we had to get back so I could photograph the reception of the destination wedding, which was held in TN.

The reception took place on a farm in the middle of nowhere TN and it was a dream location for any photographer with perfect weather, complete with a red barn, open green fields, hay stacks, rustic fun and a gorgeous tent. I couldn't have asked for anything better! It was fun reuniting with the families and friends we hung out with for the wedding weekend and we thoroughly enjoyed it. You can view it on the Shutter Sweet blog if you're interested.

Just after that, we left to go to Colorado for another wedding. This wedding was to celebrate a dear friend of ours from college - a roommate of Kyle's. Kyle was a groomsmen and it was so fun to see him wearing suspenders and a bow tie with his buddies. The location was picture perfect as the sun spilled over the mountains in the distance to light up the field where we all gathered. I had so much fun seeing old friends and meeting new ones. We enjoyed it so much, we even talked about moving there, but I am pretty sure we'll be planting our roots in Atlanta for now. However, we did stay an extra few days to go hiking, hang with friends and enjoy Colorado! I saw my first snow of the year (and actually hiked in it climbing a 12,000 ft mountain) which was my first time hiking above the tree line. I was a little bummed how hazy it was from the wildfires, but enjoyed it none the less. Here are a few photos that captured the trip:

We returned home, got settled and then two weeks later had one last wedding to attend for a close friend of ours in Greenville, SC. It was also a gorgeous wedding in a very different urban loft setting which was also a ton of fun - Kyle even asked me to dance since I was an unofficial photographer! We were able to hang out with some different college friends and head back to ATL late that night.

I had every intention of updating the blog as soon as we returned at the beginning of the month, but once we were back, I have been slammed with work and we dove straight into house plans and are moving forward (more to come on the next blog). We'll keep you posted on the progress! Hope everyone had a happy Halloween and I'll be posting again soon - stay tuned.

One Year...

It's hard to believe we are now through our year of firsts without Skylar... We've made it through her birthday and our birthdays, the holidays, mother's day, father's day, and every day in between. Yesterday marked the anniversary of her death - and so we've survived our first whole year with out our sweet girl. 

Leading up to the 16th was no fun to say the least. I was tempted to buy myself flowers or a giant bag of m&ms, but settled on two tubs of Blue Bell ice cream - on sale of course :) 

Kyle and I both dreaded it as we knew we'd be forced to re-live the most painful moments in our lives. At the beginning of August, we were informed that Skylar's "stone" was completed and in place at her grave. I know this sounds crazy, but it made me cry because the thought of seeing her name with her dates of life set in stone was so permanent. I obviously know she's gone and I will have to wait the rest of my life to see her again... but still.

Kyle and I decided to go up to SC to her grave site and take a break from work to spend the day with each other and see the stone, sit with each other and visit her resting place.

I woke up that morning hoping that I wouldn't wake up. Not in the morbid sense, but I'm not a morning person and I really wanted to just sleep the entire day away so I didn't have to feel the pain. As I laid in bed, I realized it was right around the time Skylar left us and had a good cry. After sitting with Kyle for a bit once I got up, I decided to go out in the garden. 

Gardening is my therapy and it allows me to care for things - as if I am still a mom. I haven't been able to do much in the last couple of weeks because of work, but I decided to take the entire day off to be still. Gardening allows me to be quiet. I can sit with my thoughts, ask questions and be still and wait to see if I can hear the answers... All the while I am taking care of plants, seeing things grow and produce fruit (thankfully) and getting my fair share of vitamin D and fresh air. 

Lately, I've had lots of butterflies and hummingbirds visiting me in the garden. I've been able to take some photos of them and have enjoyed "getting to know them" as they are now regulars and have their own personalities. It always brightens up my day and makes me think of Skylar when I see them. We always called her our little hummingbird because her heart would beat so fast as her little body tried to function normally and struggled to keep up. 

After gardening, we packed some snacks and got ready to leave. I was dragging my feet (and probably frustrating Kyle) but I knew what was to come emotionally and was subconsciously trying to stall. We finally got on the road and made the two-hour drive. When we pulled up, so many things were going through my mind and it was hard to contain it all. We made the hike into the woods to her grave and each step became heavier than the one before.

At the first sight of her stone, the waterfall of tears flowed down my cheeks. It looked so nice yet it was something I never wanted to see in my life. We moved it a little for better placement and pulled up tons of muscadine vines that had claimed the surrounding ground as their own. It was our way of continuing to take care of her as her parents the only way we know how... 

Before long, both of my shirt sleeves were soaked with snot and tears. It was nice to have the space to sit with my grief and Kyle's shoulder to cry on. We had a good day together, despite the circumstances.

We thanked God for the opportunity to be Skylar's parents and for the precious time we had with her. As much as I didn't want to leave her grave, I know she's not there and being at her grave doesn't get me any closer to her than here at home. We were filled with a peace and comfort coming home that can only come from God. I really don't know how to explain it so I'm not going to try. We talked on the way home, going through all of the events that followed her death and how we've grown, what we've learned and how we're grateful to be where we are. 

If you're in Atlanta and don't have anything to do on the evening of the 18th (today), feel free to come out to the Braves game to support our GA Chapter of Families of SMA (tickets can be purchased here). I am sad to say I can't make it because I will be photographing a separate charity event that I'm involved in with Shutter Sweet Photography throughout the entire weekend, but hope to hear about the great night of baseball and awareness raised. 

More events will be happening soon. Stay tuned and thanks for reading! Peace.

SMA Awareness Month

August is SMA Awareness month. It is also the month that SMA took my daughter's life.

Many of you have been following this blog for some time, but for those of you who haven't, let me tell you a little about SMA... For those of you who already know, please share this around to spread awareness! It's going to take the effort of many to fight this horrific disorder.

Spinal Muscular Atrophy is a recessive genetic disorder that does not discriminate. One in 40 people are carriers and one in 6,000 babies are born with it every year - 60-70% of those are born with SMA type 1... the most severe form. Most type 1 babies don't live to see their second birthday. Unfortunately, Skylar was one of those babies. She died just a few months shy of her 2nd birthday.

SMA is caused from a missing SMN1 gene. Without getting to technical, it's responsible for the survival motor neuron protein. Babies with SMA are born without it, but have various numbers of the back up SMN2 protein which contribute to the different types of SMA. Unfortunately, this SMN2 is not enough to sustain normal function of the motor neurons and the muscles start to atrophy. There is no cure. Eventually, babies and children lose the ability to move, swallow and breathe... and then die. It is cruel.

On August 8th and 9th, I had the honor of partnering with Quest Diagnostics to speak at two dinner events for medical professionals to share my story and also push for carrier screening as well as newborn testing for SMA. Most of the time, I can talk about SMA and our story without losing it. However, this month has been an exception.

As we're approaching the year anniversary of losing our daughter, my emotions are everywhere.

On the 8th, I was able to photograph a friend giving birth naturally at home and witness a life entering the world. It was amazing. I hope to share pictures on the Shutter Sweet blog. I was full of excitement, but knowing full well that we're not guaranteed anything - including a healthy child - I prayed for their baby and their family. Everything went well and I left that afternoon in awe of the miracle of life once again. I re-lived my labor and delivery with Skylar. Sadness came over me as I thought about never getting to have that opportunity again, but I was so thankful that I got to experience it once and have a great memory of it.

The family I photographed giving birth that day was closely connected to the family I photographed who lost their baby in the NICU a few years ago and they were on my mind all day. I was sharing in the pain and hurt of the loss of their son while also sharing the joy for this other family who were blessed with a son. After sitting with my emotions for an hour or two, I was on my way to Stockbridge to speak at the first dinner. Needless to say, as soon as I got up to speak, it was a struggle to hold back the tears. I learned my lesson and did not wear mascara to the second dinner in Buckhead the next night.

This month, memories have been flooding my mind and my heart. I think about the various things we did with Skylar before she passed away. I re-live the day we lost her as well as the day we buried her... over and over. I try not to think about it, but this month, it's been hard not to. The weight on my heart is heavy.

I see how far we've come, but I also see how far we have yet to go. It's hard to believe a year has passed without our sweet girl. We've experienced healing and peace, but we've also had to fight against anger and bitterness.

I've tried to keep busy this month and have had some major things going on with work. I helped launch a company called Online Tech Experts with a guy from my church. I designed the website (www.onlinetechexperts.com) and am contracted to run their marketing and PR for a while. It's been exciting. We have over 30 tech experts ready to remotely fix computers, remove viruses, help with email trouble, etc. and have already seen some great responses. Please check it out and share it with people you know who may need computer help!

I've also been busy helping launch a non-profit organization called GoodStars and the fundraising campaign on IndieGoGo to provide job grants to those in need. Their partner, the Starburst8 Initiative, will be launching over 100 privately held companies over the next 5 years to hopefully improve our unemployment rates here in America. They are currently hiring for two companies right now. It's a crazy large scale plan, but it might just work :) I'm excited to see how successful it will be.

I've still be busy with photo shoots, weddings and Shutter Sweet Photography stuff as well. I love my job. I am so happy that I have the opportunity to pursue what I love right now. I would be a lot less happy if I had to go back to corporate America and sit in an office all day, not to mention fight Atlanta traffic. Let's just say I am extremely grateful for Kyle's job and his support!!!

We're doing well all things considered and are thankful for great friends and family. Without the support from those we love and the peace and comfort we've received through our faith, I honestly don't know where we'd be - it's a scary thought.

Despite our heavy hearts, we've been able to enjoy each other's company and grow in our relationship. We're still planning on building our home (we bought some house plans and are waiting for a quote from a builder) and will keep you updated as things progress.

Thank you for your continued support in reading this blog and commenting when you feel like it. I know I'm not alone in suffering and hope that we can all help each other out when the time calls for it. Have a wonderful weekend and please help me spread the word about SMA! Peace.

Kyle's Birthday Surprise!

So if you see a trend, I'm going to try and post once a month and hope that's good for everyone, unless there's just a ton going on that I feel like you might want to know about. I've been slammed with work and SMA stuff (details below) as well as other daily tasks that never seem to get completed so once a month works out well!

One of the big things I was working on was a surprise party for Kyle! His birthday was on Wednesday, the 18th and I really wanted to have a small party for him since my last surprise party for him was 5 years ago :) Crazy how time flies... 

I had planned a nice picnic potluck party at the park and all day it was sunny and nice. Of course, an hour before the party, a huge storm moves in and crazy lightning is shooting out of the super dark storm clouds. Rain followed shortly after - or rather a massive downpour - and I was left scrambling for a back-up place. 

Our church saved the day! They have been so freaking amazing. I'm seriously still in awe that our church is so awesome. I ran in at 5pm because no one was answering their phones and ran into our pastor and a few others. They checked the calendar and the church was open that evening so they gave me the key and let us set everything up in the cafe. 

While friends and family were setting up and helping out, I came home to get ready and pick up Kyle. I blind-folded him and put him in the car. Had I been thinking, and if it were safe, I would've have him sit backwards because he's so stinking brilliant when it comes to directions. Even double blind-folded, he would say, "Speed bump... NOW!" as we would go over the speed bump. As we passed a korean taco place he said "Mmmm - sesame fries." It was ridiculous and impressive. 

So we pulled up to the church and Kyle's dad had already grilled some burgers on a portable charcoal grill. As we walked up, Kyle said, "Is our church on fire?" knowing exactly where we were... Anyway, we walked inside and as he took off his blindfold, everyone yelled "SURPRISE" and it was awesome! Kyle even commented how amazed he was that the room was so quiet when he walked in.

Photo compliments of Joseph and his iPone from the church window :) It was a great night full of good food, good friends and great conversation. Kyle doesn't really like surprises where he's the center of attention, so I tried to keep the party small. He enjoyed it.

So next month is SMA Awareness month and we're excited to have a lot of different events coming up! I will be speaking at several dinner events with doctors and other medical professionals partnering with Quest diagnostics to stress the importance of SMA testing. I will be advocating for SMA testing to be done with the other testing when the baby is first born (the heel prick in the first days of life) or for parents planning on getting pregnant as opposed to testing in the womb. I'm looking forward to the dinners and will let you know how they go.

Last month, the SMA fundraiser at Sips N Strokes was cancelled randomly but is re-scheduled for next month hopefully to join several other events during SMA Awareness month. More details to come soon.

Also, there will be an SMA fundraiser for the Braves game on August 18th - "SMA Day with the Atlanta Braves" To buy tickets or learn more, please visit the GA Chapter Events Page

Next month is also the anniversary of Skylar's passing and it's so hard for me to believe it's already been one year without my sweet girl. Sometimes it feels like yesterday and other times I feel like it's been 60 years and I'm a little old lady. The good news is that I was able to book a job to photograph a wedding in the Bahamas at the end of August and we leave on my birthday so it gives us something to look forward to! 

Stay tuned - lots going on in the next month or two!!!

Happy Father's Day!

To all the many dads out there - Happy Father's Day!!!

My post about Father's Day is probably going to be similar to my Mother's Day post, but different :)

You see, in the same way that I'll never forget the day Skylar was born, I'll never forget Kyle becoming a father. Kyle is not usually super emotional, but as soon as they announced Skylar was a girl (we had waited to find out the sex of our baby), he started crying. So much so, that I looked at him wondering where the heck my husband was... Me on the other hand, the extremely emotional one, laid there without a tear (probably in shock and exhausted from giving birth naturally, but still). Kyle's love and the joy on his face from snuggling our brand new baby girl is something I'll never forget.

I'll also never forget the day Skylar left us. There were also many tears and sobbing, but not out of joy this time. Kyle and I clung to each other as our little girl was taken from us. How could this be happening? Kyle was an amazing father to Skylar through the end and then some. The way he carefully crafted her box for burial was so incredible to witness - despite his heavy grief and sorrow. He helped lead our family and provide for us and I'm so grateful for that. I am very thankful that Kyle is my husband and the father of our child.

It was fun to watch him play with her, "bounce" her (the equivalent of throwing a kid up in the air and catching them - but SMA kids are really fragile so you can't throw them), build her a swing that she loved, snuggle and watch movies together and so much more! Happy Father's Day Kyle - you're the best! I love you and I look forward to the day when we're both physically parents again when we can have another family together... I guess we should build our house first, lol.

So recently, we went to visit the Gooden family to hang out and see Nora again. It was really great to see Nora doing so well! She's already 3.5 years old and growing up so fast! We had fun watching movies, playing games and swimming in the pool. We also had a secret photo shoot!!! If you want to see a special Father's Day post of pictures that I took with Nora for her daddy, check out Shutter Sweet Photography's blog for a surprise post :) I love surprises! Happy Father's Day TJ!

A random update for an SMA Fundraising Event: June 24th we will be having a "Paint Away SMA" event at the Sips N Strokes in Sandy Springs, GA. I will speak briefly at the beginning and then we'll have a fun evening of painting and BYOB (bring your own beverage - not just beer). You can sign up online at www.sipsnstrokes.com and go to the calendar for the Sandy Springs location if you're interested in joining me. Sign up asap because space is limited!

That's all the news I have for now :) I know, you can pick your jaw up from the floor. This was a short one! Stay tuned for updates and pictures from the fundraising event! 

Being A Mom...

I'll never forget the day that I gave birth to Skylar. As soon as her little body slipped out of mine, they put her warm tiny figure on my chest and I just stared. Amazed. Life just came out of me. I am a mother and it's my honor to take care of this little baby who will hopefully grow up to love and respect me as I teach her how to navigate through this world.

I'll also never forget the day that I held Skylar as she took her last breath. I knew it was coming and there was nothing I could do to stop it. She was a big girl - almost 2 years old. Everything about her amazed me still. I think about how she found such joy and wonder in the life around her. She taught me so much... why would God take her from me? Hearing her last breath and then nothing... well, it was something I wouldn't wish on anyone. It was very clear that her body was an empty shell after that, which soon became purple and cold. There was no life inside anymore and she was gone.

I believe that now her life is in Heaven and she can have it to the fullest. However, I must admit that it really really sucks being a mom without a child. I miss taking care of her, rubbing my hands through her silky strawberry-blonde hair, snuggling together while watching the latest animated movie, or her favorite, Finding Nemo. I wish I could still play with her, make her smile or even better, giggle. We still had so much left to do...

My heart goes out to all the other moms out there who have lost children and have to face this holiday for the first time, and every time after that. It's not easy. Yesterday was a painful reminder of my loss and the emptiness that's filled the hole Skylar left. Thankfully, my husband, family and friends were there to support me and love me.

I am learning that "it gets better with time" is a big fat lie. I don't think I will ever miss my baby any less than I did the day she left me. I am missing a piece of me - a piece of my heart - that I will never get back. I may learn how to cope better over time, but it will never hurt any less while I am on this Earth.

My heart also goes out to all of the children out there who are without mothers. I have to imagine that this day is very painful for you as well. I wish that everyone passed away in a peaceful way from old age, but I know that's not reality and some people have gone through some serious traumatic experiences. I hope you are able to find peace and comfort.

Last year, I had the best Mother's day. My baby was here, CBS news did a story about our family to raise awareness from SMA and highlight us as an "Inspirational Family" which aired on Mother's Day, I got lots of flowers, I felt loved and my heart was full.

This year, CBS did a follow-up story thanks to Avery's Bucket List who brought SMA to the news headlines. CBS has done a wonderful job covering our story and helping me raise awareness for SMA. Here is the video from this year with photography by Tessa Marie:
Here's the link if you want to read the full story.
It was really hard to watch Skylar in a video, alive and breathing with life in those big blue eyes of hers... I was able to see her. Something I've longed for since the day we buried her. I've found flowers and ice cream (or Yoforia frozen yogurt) are my comforts as I've added potted flowers all around our patio and front porch. I already had a hummingbird come visit, which was a nice reminder of Skylar. We called her our little hummingbird because her heart would beat so fast. Dragonflies and butterflies also remind me of her for some reason so I've made sure to get potted plants that will attract them as well :) Gardening is therapeutic for me and allows me to nurture and mother again.

One of these days, we will feel it's the right time to adopt and we look forward to becoming parents again. For now, we're still parents, but just without a physical child and trying to enjoy the time we have as a couple again. Adopting will never replace Skylar or heal the hurt we still have, but will allow us to have a family again and love a child unconditionally as our own, the way that God loves us.

Blessings to all you moms out there. It is sometimes a difficult and thankless job that most people don't fully appreciate, but that's not why we do it. However, it is nice to be thanked and appreciated for what you do so hopefully you had a wonderful Mother's Day and felt very loved. Peace.

In Honor of Avery

So not much has changed personally for us since our last update, but if you're keeping up with the news at all, you will know that a lot has changed for SMA.

Avery, a little girl diagnosed with SMA type 1 on Good Friday this year, and her family created a blog called Avery's Bucket List. Within weeks, they were able to break through the media bubble and gain awareness that SMA families have tried for years to achieve.

I was shocked to learn that just days after appearing on CNN, Avery suddenly passed away from a collapsed lung which sent her into cardiac arrest. I was stunned and couldn't believe that her life ended so abruptly. My heart goes out to that family and my prayers are for peace and comfort to surround them. Obviously I don't know what the future holds and I am not God (or Heaven would already be here on Earth so we could all be free from suffering, death and sorrow). However, it was amazing to see the plans for Avery's life and death - and their impact on the SMA community.

Just days after Avery left this world, people have come together to donate $154,000 as of this evening to fight SMA through gene-therapy research - plus it will be matched by an anonymous donor up to $500,000!!! Families of SMA has also pledged up to $750,000 to the gene therapy program. Big things are happening and as I said on facebook, we are extraordinarily grateful to Avery and her family for getting things moving full steam ahead. SMA families around the world have been working for years and years to raise awareness and funding - hopefully this will be the momentum we needed.

There is a push for funding for the gene-therapy research and for SMA research in general since it is the genetic disease closest to a cure (according to the NIH). Also, there is a big push for SMA carrier screening for women who plan to be pregnant.

My OBGYN's office is currently offering the testing. I am so thankful it is being offered to women in the planning stages, but I am sad it is being offered to pregnant women. The reason I say that is because it leaves a woman (and spouse) with a terrible decision of killing the baby in the womb or giving birth only to know the baby will die early and the road ahead is rough. I know you can start treatment sooner, and it does give the family time to prepare and start learning, but my personal preference would be to have it happen exactly the way it did for us.

I had an amazing first pregnancy and delivery. My pregnancy was full of joy, excitement and love. My delivery was painful, natural and wonderful. Skylar was beautiful and we could enjoy every second as carefree ignorant parents when she was welcomed into this world. We still had hope for a healthy baby girl and big plans for her future. It was my only pregnancy that I will ever have. I am so thankful that I had a good one.

I would have been so sad to have my first and only pregnancy ruined by SMA. The worry, grief and anxiety might have taken over. I probably wouldn't have been as excited to buy things for the nursery, let alone push her out of me to enter into the world where she would slowly be taken from us.

All that to say, there is a petition that you can sign to get SMA carrier test screening as a standard for OBGYN offices. I have signed it because I don't want another parent to have to go through holding their child as they die in their arms from SMA - a disease that can be prevented through the knowledge of you being a carrier or not. Unfortunately, this petition also allows pregnant women to be tested as well. My prayer is that if a woman did find out she was carrying an SMA baby, she would have it, love it and learn from it. I can't imagine my life without Skylar. I am a better person because of her and our journey with SMA. I know for a fact my life would not be near as full as it is now (despite it feeling empty from missing her).

Sign the Petition!

As always, thanks for keeping up with the blog! Peace.

Steps Forward...

I am so sorry that I haven't posted in two months for those of you who faithfully check this... First of all, thank you for still checking up on us! I can't believe how fast time has flown by. We have some big updates that have helped us keep moving forward.

Update One: A huge tree limb fell on the house that we own. This is the house that we hoped would get an extreme home makeover, but the show had its last season and honestly now that Skylar is gone, there are many more people who would need it more than us even if it did have another season. So back to the tree... we decided to file a claim with our insurance. After all, we are paying a ridiculous premium since the house is vacant so we thought we might get some of our money back to help move things forward.

We did get the tree removed and also the roof tarp on to prevent further damage, but the insurance company is being extremely difficult. We're looking to hire a public adjuster to help us fight the insurance company because honestly, I am tired.

I am tired of fighting. I spent two years fighting with medical insurance, medical providers and third party vendors to get everything we needed for Skylar. At least now I have learned to hang up before my blood pressure goes through the roof. I spent a year and a half fighting SMA and fighting for my daughter's life. I am worn out. I am totally willing to hire someone to be on my side and fight for me.

Update Two: My companies are official LLCs now and business has been pretty steady! I feel very blessed to be able to pursue what I love and continue to have referral business. This is part of why I have been MIA. If you want to see what work I've done, you can check out the blogs at Shutter Sweet Photography (weddings, portraits and life event photography) and Skylight Creative Group (corporate photography & graphic design). I have one person second shooting with me at Shutter Sweet Photography and then I have another person helping with the marketing/consulting side of Skylight Creative Group. It's definitely kept me busy and has been a very good thing to keep me getting out of bed every day.

I've actually had a lot of newborn shoots with Shutter Sweet Photography the past two months and have a lot more coming up this month. People have asked me if that's hard, and I would have to say no. Honestly, when I see a newborn, I pray that he or she will be healthy and am in awe to see the strength in different movements. It makes me happy to see that other families will have a normal development experience because I hope that for Kyle and I whenever we decide to adopt. Nothing is sweeter than cuddling with a newborn baby. If anything, it makes me miss being a mom, but I know it's not my time right now.

Update Three: It's spring time, which means we have a garden growing! We're very excited about our veggie garden! Last year, we had an incredible crop production and it was so therapeutic for me to be outside tending to plants and watching things grow and produce. We joke around that our plant seedlings are our plant children because they really do require so much care when you start from seeds. We already have a variety of okra, lettuces, tomatoes, peppers, herbs, and beans growing not to mention some cucumbers, radishes, peas and strawberries. I wish I could add broccoli and brussels sprouts to this list, but something ate them all already... Something ate our okra as well, but luckily I had extra seedlings that I could transplant and keep growing. We love gardening and hope to have a farm some day... Now if we could just find a big chunk of land close by for cheap or get it donated, lol - doubtful in Atlanta.

So as you can see, we've had our hands pretty full. Kyle has been really busy with work, but we're so thankful for his job and how wonderful CNA has been throughout this whole journey. They are a great company and we will always have good things to say about them!

As for us personally, we've had our ups and downs the past few months. In December, I was diagnosed with Endometriosis and had surgery to remove the three occurrences they found. I have been taking medications, changing my diet and going to different specialists to try and manage the intense back pain that has been constant for over 6 months now. It's gotten better, but the disease is not very well known so most everything is trial and error. Not fun. Giving up gluten was suggested because it's an inflammatory and that's seriously been one of the most depressing things for me. I can't tell you how badly I crave bread - a sub, any sandwich, a burger with a bun, a french baguette, a doughnut, flour tortillas, fried chicken, pizza, and all the other yummy foods in existence. Thankfully I can still eat corn and potatoes! I don't know what I would do if I had to give those up... The good news is that the constant pain is pretty much gone but I am still experience horrible back pain once a month - ladies, you know what I mean.

Emotionally, there are times where my heart hurts so bad because of missing Skylar. I wonder what she would look like at 2.5 years old. I try to imagine what our lives would be like if she didn't have SMA. Then I stop. There's no point. I can't change anything. I do have longings to watch Finding Nemo, Cars, etc. In fact, Kyle and I tried to watch Despicable Me together, but we were both tired and ended up falling asleep at one point or another. It was hard to watch it without Skylar around. We've been able to enjoy fun things together though too like the Banff Mountain Film Festival (google it if you've never heard of it and enjoy films of extreme outdoor sports/action) and going to the rock climbing gym regularly.

So, I was watching The Help last month and Aibileen talks about losing her son. Her words hit me, "It weren’t too loo long before I seen something in me, had changed. A bitter seed was planted inside of me. And I just didn’t feel so, accepting, anymore."  I realized that I too had a bitter seed planted inside of me as I think most parents who lose a child do... I feel like I am doing my best to get rid of it, but it's so hard when you see other parents treating their kids like they are just annoying burdens, interfering with their own lives and selfish plans. Everything in me wants to scream at them. Do they not see how blessed they are to have healthy kids who just want their love and attention?! There are other situations that trigger it as well like people wanting a pity party and complaining about something insignificant... I am still learning how to let it go and not get angry. I am thankful for my perspective on life, but it's definitely hard at times. It's easy to focus on yourself, but there's a much bigger picture and I try to keep that in my mind to prevent my own pity party.

Helping others is always a good thing and has helped me keep a good perspective the past few months. There is always someone worse off - no matter how bad you think your life is. We all face suffering at one point or another in life to varying degrees and I've learned the people who come out on top somehow manage to keep a positive attitude and their sense of humor. Another thing that has helped is having a great support system. We will always be grateful for the friends, family and complete strangers who have truly loved us and supported us.

Well, this is getting long (surprise!) but my next post should have some pictures from a trip I plan on taking soon visiting some SMA friends! I am excited to share things that are coming up in April. Hoping everyone is enjoying Spring and the wonderful weather! Peace.

Nora Turns 3!!!

For all of you who have been following my blog for a while, you know that the Gooden Family (in Knoxville, TN) are close friends of ours. They were one of our first SMA friends and we've been so blessed to have their continued friendship. Their daughter, Nora, is AMAZING. She just celebrated her 3rd birthday and is doing so well!

For those of you who don't know Nora, you are missing out! She has SMA type 1 like Skylar, but Nora is much stronger (obviously - she's turning 3)! Even though she has lost a lot of her movement, her respiratory system has stayed strong and she currently only needs her bi-pap machine for sleeping. Also, she's able to vocalize sounds and syllables, which Skylar never was able to do. Nora sang "This Old Man" to us and my face hurt because I was smiling so big! You can learn more about her here...

I was so excited when I got the message that The Goodens would be coming to Atlanta to celebrate Nora's birthday this year. The American Doll store at North Point Mall in Alpharetta (my home town) was extraordinary and opened up their store an hour early for us so that we could shop without any other kids with germs in the store. We had a nice private room for our brunch as well and it was a wonderful experience. The staff was amazing and Nora's birthday is a day I will never forget.

I am warning you now - I took tons of pictures and had the hardest time narrowing down which ones to put on the blog. The only two pictures that don't include Nora is the one of Kyle's brunch plate because it was so pretty and wonderfully delicious and then one of Kyle later on admiring Nora so all of you can see what he looks like with a buzzed head :) I don't think I've posted a picture of him since he donated his hair...

You can see Nora shopping, choosing her doll, the entire group of us shopping with Nora (including Kyle, TJ and Jaime, Jaime's mom, Nurse Kim and her husband), resting for brunch, blowing out her candles - which is incredible, eating some cake and ice cream, and packing up to leave. You can click on the first image to open the lightbox feature and view the larger images from there. Enjoy!!!

A burdened heart

If any of you have been watching the news, you might have seen that 4 people, including a woman from Atlanta has been missing on Mount Rainier for over a week now after horrible blizzard conditions on the mountain came out of nowhere. Well, that woman, Michelle Trojanowski, goes to our church. Kyle and I don't know her personally, but she is highly involved with the leadership of our church and many of our friends are very close to her. We've had several prayer gatherings at our church to pray for her and her friend (who is a very skilled and experienced hiker) and the other two people.

My heart has been very burdened to pray for her and I've had the reassurance (which I can't explain) to not give up hope. I know that the longer she is gone and the worse the conditions are, the more amazing her survival and rescue story will be. I also know she could very well be dead. Search and rescue teams were finally able to get in the air after a week of terrible conditions, but the two helicopters and one Cessna plane with infrared technology came back with no results. It really could go either way still and if you've been reading this blog for any amount of time, you know that I like to stay positive.

It's been a challenging time for us. Our church service on Sunday used some of the same scripture that was used in Skylar's memorial service and we sang most of the songs that we did at her memorial. I was a mess, but just like our service for Skylar, it was full of hope, even though we also recognize we are at God's mercy and are not in control. Anything can happen. We are reminded that prayer is not a vending machine. You can't say a prayer and get back what you ask for all of the time... If that were the case, we'd all be god and that would just be scary. As much as I like to think I'm not a selfish person, I have to continually change my thoughts and prayers to be less about me. I can also admit that I certainly don't know what is best for everyone and I can tell you that you would not want me (and everyone else) to get what we pray for all the time.

Situations like this leave a lot of questions... most start with "why" and end in a big ?

I think it's safe to say that prayer is challenging for a lot of people - if we don't get what we ask for, then why do we do it? For me, it's more about the relationship, talking to God and being honest about where my heart is and what I am feeling or struggling with in life. I can't tell you how many times I begged God to heal Skylar knowing He could do it. I didn't give up on that until she died. I also knew that God could use her death to reach a lot of people and put us in a place where we could relate to people who we couldn't otherwise relate to. I knew that either way, whatever happened was for a reason. I trust God to do what is best for this world, which includes each and everyone of us and our personal lives. We live in a world where there is suffering and there is death. I truly believe that we were not made for this. I can't tell you how wrecked my heart was and still is after losing Skylar. There were some days I laid in bed and wondered why my heart was still beating - how was it physically possible?

I want to be clear that I think God listens to prayer all of the time and sometimes He answers. I feel like prayer is very mysterious, much like God Himself and our faith. We don't know why some things are answered and some are not. We can't quantify how it helps. We aren't sure if it even makes a difference sometimes. We do know that the bible has many instances where God hears and answers. Also, the Lord's prayer that most of us have heard may times - Christian or not - is supposed to be the example set for us on how to pray.

Right now, I know their supplies must be getting low if they're not out of food and other supplies already. I put myself in their shoes and I can imagine that I would be losing hope of being found. I would be cold, exhausted and wanting to be home. Putting myself in their shoes has helped me pray specifically for them in addition to their rescue and God's will being done.

All of this to say, please keep Michelle, her guy friend that is with her, and the two other Korean hikers on the mountain in your thoughts and/or prayers if you do pray. Michelle's family has travelled from Florida to Washington in order to be close to them and are just waiting to hear anything. I can tell you from personal experience that 'not knowing' can be worse than knowing. Their emotions must be on overdrive right now. I have been praying for peace and comfort for the families of the hikers and that we would have knowledge of their fate soon.

Well, to change pace a little bit - my next post will be posted tomorrow and will be much more light-hearted as I will post pictures from Nora's 3rd Birthday party!!! The Gooden family traveled from Knoxville, TN to the American Doll store at North Point Mall in GA and we had an amazing time! I am so excited to share that day with you - stay tuned! Nora has certainly captured my heart and I'm sure she will yours too. 

All Things New

Happy New Year Everyone!!! I hope you had a wonderful holiday season and have had a great start to 2012 so far...

Our Christmas was spent on lake Hartwell (near Clemson, SC) with Kyle's family. I was slightly disappointed that we didn't have a white Christmas like last year, but was so thankful that our very rare white Christmas came while Skylar was here with us. We still enjoyed our time with family and loved staying warm by the fire. We were able to see some of our best friends from college and hang out in Clemson and enjoy some fun memories together.

For those of you who keep up with me on facebook, or in real life, you know that I've been fighting a wicked cold for two weeks now. Not really the start to the new year I was hoping for... What started as a swollen, painful, sore throat and ears right after Christmas turned into a major sinus infection and who knows what else. I cancelled New Year's Eve plans because that's when I really started feeling worse and I didn't want to get anyone else sick. Kyle cooked a wonderful dinner for me and we just enjoyed resting in front of the tv - something we don't do very often. Apparently a lot of stuff is going around right now so make sure you're washing your hands a lot!!! Kyle has managed to stay healthy, thank God, and I woke up today relieved that I could breathe through my nose again! I am just thankful it's nothing I can't get rid of with rest and vitamin C. I know there are plenty of people suffering with much worse...

So to catch you up on some things - I started breaking down Skylar's room at the beginning of December. It's just as awful as you might imagine. Kyle was out of town and I knew I was going to be an emotional mess so I went ahead and decided to have my breakdown while he was gone. Before disassembling her bed, I curled up with her blankets, put in Finding Nemo and just cried for hours. I didn't want to sleep because I wanted to cherish every last moment, but ended up passing out in her bed for the night. Losing that bed was like losing a piece of Skylar all over again. We lived in that bed together. Kyle came home a few days later and we slowly tackled packing up her toys and books.

We decided to re-paint her room completely and turn it into an office for the two of us. On January 2, our cousins had come into town for the Passion conference at the GA Dome, which is the night we started painting and finished cleaning her room. Passion is an organization that puts on a yearly conference around the nation attracting tens of thousands of college students wanting to learn more about Jesus Christ. This year, someone generously donated the funds to make the live-stream possible and we took advantage of it. While we were listening to the live stream on our computer, I found one of Skylar's little wrist splints that was formed for her hands. It fit so perfectly in mine and the tears started streaming. I miss her sweet little hands and her little hand hugs when she could muster the strength to give me a squeeze. Not that I needed any more help producing mucous with my cold, but my nose became a waterfall to add to the tears rolling down my cheeks.

Anyway, I was in the middle of my emotions, holding her wrist splint in my hand needing to blow my nose, and all of the sudden, Louie (the main speaker that night) started reading scripture about a widowed woman who lost her only son and was walking through his funeral procession. It struck me a little odd that a scripture about death and funerals was being read to open up the conference to a ton of college kids... Then I heard Louie say in a stern voice, "Stop Crying" and I just looked at the computer. What?! Can he see into my room? How does he know I am crying? He goes on to talk about Jesus, full of compassion, coming along side of this woman and telling this woman to stop crying. Then, Jesus tells the dead son in the casket to get up and he does. Louie went on to talk about funeral processions, death, and arising to new life. It was an incredible message - one that I cannot do justice in just a few sentences.

I really was shocked how applicable all of it was. I felt as if he was speaking to me personally, yet there were over 40,000 college kids packed in the GA dome, plus the millions watching online, and I know each person heard the message in a way that was personal to them. It is such a beautiful thing. We learned a lot listening to passion online, and if you're interested, you can visit their website to learn more. There's even an option to buy/download the messages online and to donate to the causes they have partnered with to help end slavery that is still going on - including sex trafficking.

So back to Skylar's room - yesterday we bought an ikea desk from craigslist and set it up so that Kyle and I share what we now call the "office" instead of Skylar's room. It's actually pretty funny because our desks split the middle and it's funny to see our personalities split the room as well. We spent most of hte night setting everything up. His side of the room is natural wood and black and mine is silver and white with a lot of Skylar's colorful storage bins still being used. Pictures coming soon! As painful as it is to no longer have a nursery and a daughter to go with it, I needed the space to work with the launch of my new companies. Yes, plural.

Shutter Sweet Photography is my new company for weddings and portrait photography. I'm really excited about it and am already staying busy with photo shoots and events. What most excites me is the potential to help others. With every photo session or event, 50% of all print proceeds will go to a non-profit cause of the client's choice - whatever they are passionate about. I have a list of my own causes that I am supporting as well and look forward to hopefully helping a lot of people through portraits.

Skylight Creative Group is my new company for commercial work. Corporate photography and graphic design go hand in hand with good marketing for any business and I am happy to offer those services to help companies succeed in this economy. I already have several clients and look forward to growing this business as well. I love the variety of projects I get to work on and the challenge each client brings.

As for me, I am re-purposing AshleyNicoleJones.com to be my own personal website to showcase my personal projects. Being my own photojournalist, I hope to inspire and challenge people who stubble upon my work. Being sick has set me back a few weeks already into my first project, but I hope to have something to share in the next month or two. All of the websites don't have working portfolios yet, but everything should be completed in the next few weeks.

I'll try to get some before and after pictures of Kyle's new haircut, our new office, and anything else that seems to change between now and then :) Thanks for reading and keeping up with the Jones'! With the new year already in full swing, Kyle and I are moving forward with hope. Whatever situation you find yourself in, may 2012 be full of hope and blessings... and of course, peace.