Thursday, September 29, 2011


I don't know who said "change is good" but they obviously didn't like where they were in the past. Lately, we've gone through a ton of change. I don't know that I would say it is good or bad, but it's just change.

One of the first big changes to happen was switching vehicles. We had been using a van to transport Skylar around in her handicapped stroller that was graciously on loan to us by a family I was friends with in high school. Since we no longer had a need for the van, we switched cars and I got my blazer back. I love my blazer. It's a sport edition with a lift and great off-road performance. Despite it being a 2003 and needing some minor repairs, it's been a fantastic car. It was a pain in the neck to try and get a car-seat through one of the two doors, but since we're a couple again, that's not an issue for now. It was a strange mix of emotions getting into it for the first time again.

Our second big change was getting all of the medical supplies out of Skylar's room. Everything in the original packaging is boxed up now and ready to ship it to FSMA for them to send out to families in need. I'll have to arrange that when we get back though. There are still a few things here and there that we will send out individually, but it's nice to get most of the stuff out. That was also a change full of mixed emotion. On one hand, I was glad to be done with it, but of course, I was sad because it means that my little girl is no longer here. I'm not too sure when we'll get to the rest of her room... that makes me sad thinking about it.

It's been a hard realization that I will never see Skylar again in my life here on earth. As a Christian, I have the hope and faith that I will see her in Heaven, but it makes me sad that I have the rest of my life on earth without her. Not having her here brings me to the third major change. I cut off all my hair!

I know, you're probably thinking, what?! Back in 2007, I donated my hair to Locks of Love (making wigs for kids with Alopecia) - Kyle actually went with me to the salon when we were dating and cut my ponytail off. Well, I planned on keeping my hair relatively short after that. At some point when I was pregnant, either from trying to save money or being forgetful - or both, I realized I had let my hair grow out quite a bit. I remember saying, "as soon as our baby starts yanking on my hair, it's coming off!" Well, months went by after Skylar was born and one day, my hair was annoying me. I thought to myself, why in the heck have I not cut this off yet?! And it hit me - Skylar didn't have the muscle to pull on my hair ever... So I reached down to grab her little hand and let it run through my hair. I have never heard Skylar squeal with delight the way she did that first day. From that moment on, playing with my hair became a regular event to make her smile and I was happy to grow it out so she could have as much hair to play with as possible.

Well, as you can imagine, long hair is long. When it gets long, and is as thick as mine is, it gets heavy and harder to keep healthy. After Skylar passed, I no longer had a "need" to keep it and had planned to donate it again. This time, I cut my pigtails off myself which was fun and I am donating my hair to Pantene ProV (making wigs for women who have gone through chemo due to cancer). It's a great cause and my hair will grow back. I'll probably donate it a few more times if I am able, but for now, I'm happy with a lighter load. Here is a picture of me with one of my "tails" -

A lifestyle change that has taken place is the ability to go out again. I've had a really great time catching up with old friends who were too far away or had too many kids to make things work when Skylar was here. When Kyle was traveling for work, I ended up going to visit some SMA friends out of state, because I could! I drove to the Grimes' house to hang out (they lost their Annie girl in August 2010 at 9 months old - type 1 SMA) and enjoyed going to an apple orchard, seeing a movie and other fun things. I also went with the purpose to help take photos and work on their vet clinic website and materials. Eddy Grimes is a veterinarian and started his own clinic - it's been fun to see the business take off and do so well. I'm hoping to bring Reese to see him in November! Here is their festive family below :)

Then, I couldn't help but drive to Knoxville, TN to visit the Gooden family and sweet Nora! If you've been reading the blog for a while, you may recall that Nora was the only other SMA child that Skylar got to meet. They held hands and I am sure communicated on a level we will never know. Nora is much stronger than Skylar, thankfully, and is already over 2.5 years old and doing extremely well! I got to see her when I went up to support the Paint Away SMA event and have been missing her ever since. This visit, I was able to spend a few days with them and it was wonderful. I can not believe how grown up she is now!

Nora is so alert and smart - like most SMA kids. She's actually starting school at home so we worked on the letter "B" and sang songs together and I got to learn all sorts of Nora things. She makes the most adorable pirate face. She also likes to pretend to sleep and then laughs, which is hilarious. It truly was a great visit - Nora has captured my heart from day 1 and her parents are so wonderful too. I am so happy that they have the ability to communicate with her some and are able to enjoy the life they have together right now. I just wish we lived closer! Leaving was awful though. I obviously miss Skylar, but I cried half the way home because I was so sad that Nora has SMA, that her parents are going to go what we went through, and there is absolutely nothing I can do to prevent it.

I read this analogy in the FSMA monthly newsletter - that having your child die is like being hit by a semi-truck. I've since come to understand that it's true. As I laid on the pavement on August 16th, I didn't want the cars to keep going by. I wanted the world to stop around me - because my world stopped - but it didn't. As I slowly picked myself back up, I found that I could stand with Kyle. Then I discovered that ever so slowly, putting one foot in front of the other allows you to move forward. However, I am stuck on this road and I can't get off. Every now and then, another car or truck will come by and hit me again - I collapse. I cry. I get back up again. I find that my feet will keep moving. Sometimes I can sense it coming... other times it just hits me out of nowhere. I am guessing that as the time passes, getting hit by those trucks will still hurt like hell, but might be less frequent. I am always going to be on this road though. My child is gone and is not coming back. I have a piece of my heart that is missing. I so wish there was something I could do to prevent other people from experiencing the pain. I can see them on the road. In the distance, there is a truck. My road is not their road though, and I am helpless. I can yell, I can scream, and believe me, I can and do plead with God. Even though we don't always get answers, at least I know that there is a strange peace and comfort in the midst of it all and I hope that other people feel that too.

Well, that was a strange rambling thought for 5 AM so I better stop now, lol. We're leaving for Greece soon. I was truly hoping to get the memorial video up before we left, but it's not going to happen. It's totally my fault because I wanted to add something to the video that required editing, but my friends who are going to edit the video have been on vacation (I only do photos - video is a whole other animal), so hopefully it will be done when we return and I will be able to post it then. Thank you for being patient and for still reading my blog :) Next up: Memorial Video and Greece Pictures! Peace.

Wednesday, September 7, 2011

Fundraising For SMA

Hey Everyone,

I hope to have the video of Skylar's memorial up soon, but it will probably be in the next post so I hope you can wait to see it...

In the meantime, I wanted to update you on the Brushes of Hope fundraiser we did to "paint away SMA" at Sips N Strokes. The place was packed out (around 80 people) - mostly with people I had never met before. At the beginning, I was able to say a few things about SMA and Skylar with only a brief moment where I got choked up (despite it being only a week and a half after we lost her). Wendy LaVoy, the artist behind all the great paintings, came to our location to teach the class, which was very special. She even offered to sign people's artwork and t-shirts that people purchased that night, in addition to selling her famous window paintings with a portion of the proceeds being donated to FSMA.

We were able to raise a lot of awareness (they posted the event on their facebook page) and also money to be donated to the GA Chapter of FSMA. The Sips N Strokes staff at Sandy Springs have been amazing and we're so grateful for their support - THANK YOU! We hope to do another one in a few months for those of you who wanted to come but were unable to make it! Below you can see me and a good friend from high school who came out to paint with her mom. The painting of the night was titled "Funky Owl" which I chose because Skylar's room had an owl theme - and it was just a super cute painting that I thought most people would enjoy.

Even though everyone paints the same picture, it's really fun to see how they turn out differently! It's a really cool way to learn different techniques while painting and walking home with something you can hang on your wall. Sips N Strokes also hosts parties and events - they have kids nights too if you're bored and looking for something to do!

As far as updates go with Kyle and I - we're very excited to take a 2nd honeymoon and have decided to go to Greece! It's somewhere we've both wanted to go, but never thought we would have the chance so soon. Family and friends have been extremely generous in donating money to us specifically for our vacation and we're so thankful. If you have any recommendations for places to stay in the islands of Greece, feel free to leave a comment! I'll keep you updated and will certainly post pictures!

My birthday was bittersweet. I obviously missed Skylar, but was able to get out to celebrate with family and friends enjoying great food and fun times. Over labor day weekend, Kyle and I drove to NC to celebrate my birthday together. Kyle and I stayed with a wonderful family (old friends of Kyle) who made us feel so at home in their mountain house. Then we spent one night in Asheville before heading back to ATL. We enjoyed local festivals, amazing restaurants, great hiking and fun times together.

Kyle is back into work and I am getting ready to launch my new company for photography, graphic design and consulting. The company is Skylight Creative Group and is partly named in honor of Skylar :) Also, I love using natural light or "skylight" for my photography when I can and the creative group part came from offering a group of creative services. I just created a facebook fan page for it and I'm working on the website ( With completing administrative stuff and editing pictures from a newborn photo shoot, I certainly have plenty of work to keep me busy!

If you're in the Atlanta area, mark your calendars for Sept. 22 when the Hope & Light Foundation will be having their Dine Out Night partnering with local restaurants to raise money for SMA research. You can check out their website ( under events) for restaurants involved and details, but if you visit a participating restaurant that evening, a portion of all profit made will go to the Hope & Light Foundation!!! We'll be heading over to the VA Highlands area to join them and hope to see you there too! Thank you Hope & Light for featuring Skylar on your website - that was such a sweet surprise when I checked out your website for the Dine Out Night info :)

Check back in a week or so for the memorial video - thanks for keeping up with the Jones'