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.