Monday, May 23, 2011

The Skylar Project!!!

The reveal of our new logo and so much more - drumroll please...

The Skylar Project! 

We didn't want to start a foundation, because there are plenty of other foundations already in existence for various SMA support and research, but we did want to join forces in raising awareness and fighting for a cure. The Skylar Project was born. Website will be coming soon...

It all started with our friend, Ernesto. He came over to our house one day and said he had a t-shirt designer create a t-shirt to be sold in some of the stores he sells to and called it The Skylar Project. On the inside, where you typically see the size printed, there was a paragraph about our family and SMA. On the back, at the top, there was a logo for "The Skylar Project" done by his designer. It was different than what you see above, but the logo was the start of our inspiration.

The Skylar Project. I loved it! Raising awareness for SMA and supporting SMA research through foundations already in existence. What could be our first "project?"

Our best friend, Austin (the guy on the news clip with us), let us know that he and some of his friends wanted to run for Skylar. We chose a race (supporting Kate's Club - an organization that supports children who have lost parents or siblings) and decided to get a team together to run. We thought we could raise awareness for SMA if we all wore t-shirts during the race. In the near future, we hope to have a 5K/10K run where the registration money would go straight to SMA, but this was a test run to figure out how things work. Below is Team Skylar - missing a few people after the race, but what a great showing!!!

The race was this past Saturday in Grant Park. It was a beautiful venue, however, the course was packed with hills! Over 20 people showed up to run for Skylar and it was amazing! There were a handful of people I had never even met before! Four guys drove down from NC to run (see below) - including our friend Scott (who helped design the logo and ran the whole 10K as gumby), his roommate Ryan (aka Captain America) who we met once before, and two of their guy friends we had never met until this weekend. Some of Austin's friends from church joined us and it was just so awesome to see people I didn't know wearing The Skylar Project jerseys. Tessa, our awesome photographer came, my mom and a few of her friends, our neighbors and friends joined us as well. My friend from church, Corrie, ran the 2K with me and her two girls ran with us, or should I say ahead of us, the whole time... It was great! THANK YOU SO MUCH to everyone who came out to support us. It was so wonderful to see you!

The jerseys were a special deal for those who ran, but if you are interested in getting a t-shirt with The Skylar Project, please post a comment and let us know! I am hoping to have two different color options - a charcoal t-shirt like the image above and then a purple shirt with a lavender and white logo so write what size you would like (and what color if you have a preference). We are just getting an idea how many we would need to print - this is not an actual order. That will hopefully come soon! I am guessing they'll be around $20 or $25 per shirt. I hope to have youth sizes too, but that will depend on the vendor. 

Thanks for reading - my next post will hopefully have recent pics of Skylar :) Peace.

Thursday, May 19, 2011

1 & 1/2 YEARS OLD!!!

Wow - we are halfway there to beating the major odds - a second year with Skylar! It's incredible to have a year and a half with our little girl! We have a 10% chance of making it to November 19th with Skylar and we're hoping to see that day and celebrate it big time! We've been pretty stable these days and are just in a period of waiting. As far as Skylar goes, we're waiting for next month when we can get the trilogy (and check into the hospital), we're waiting to see if Extreme Makeover will bring that bus to Atlanta (we still haven't given up hope), we are still waiting for Skylar's teeth and we're waiting to switch all of her equipment again once we get the trilogy and fight for some more back-up equipment. As for friends and family, we're waiting for updates on baby Joshua, waiting for news about my step-Grandma in FL who is pretty ill right now, and in general, waiting to see what God does in our lives and those around us. Even though we're waiting, we're still living!

This past weekend, I had an amazing day Saturday! I was able to drive to Knoxville, TN for the day to hang out with the Gooden Family! That's right, I got to spend the day with sweet Nora Gooden who is the most precious little girl next to Skylar of course. I can't even begin to describe how much love I have for her and for her family. You may recall seeing Nora in pictures on my blog meeting Skylar last year when they came to the GA Aquarium and stopped by to visit. Anyway, I made it up there around lunch time and got to play with Nora for a few hours. She is so expressive and fun to be with - I helped her launch little plastic monkeys into a plastic tree for hours until it was her nap time. I loved seeing her so excited and proud of herself! Later, we went for a walk, played with bubbles, watched cartoons and just had fun. I hijacked her iPad so I could see all of the great apps they have found for Nora since we're always looking for new fun things for Skylar. I was able to get her to smile and laugh by tickling her with my hair - it was so cute!

As I was sitting outside with the adults for lunch, TJ said, "tut tut, looks like rain" very casually and I looked at him with a smile and asked, "did you just quote Whinnie the Pooh?!" It cracked me up! Later, they quoted a few other movies perfectly, without hesitation, in normal conversation. I thought Kyle and I were the only ones who brought animated movies to life in casual talk so it was really fun to hear someone else do it and be able to appreciate it :) Tj and Jamie are such a fun couple - I wish we all lived closer together, but the three-hour drive was totally do-able so hopefully we can do it again! They are so full of love for each other and are extremely strong individuals - very inspiring.

So that evening was a creative SMA fundraising event through "Sips-n-Strokes" where we had a lesson in painting (my excuse for going up there). I have always wanted to paint, but haven't had the time or confidence to do so on my own so it was nice to have a guide and other people in the same boat who have never held a brush. We each got our own canvas and we were all going to paint the same design - a whimsical tree, aka the GoodenTree! It was funny because I can't paint abstract things very well - especially when you start with a blue sky and a brown tree and then ask me to paint the "grass" like a sunset. It was actually pretty hilarious - Jaime, Nurse Kim (Nora's Nurse who put on the fundraiser), her fiance' and I all had some good laughs. Jaime was a natural and all the "teachers" kept asking her if she's painted before and commented on how amazing her painting was... I don't know why they didn't ask me that, hahahaha. I had so much fun and it was a nice change to hang out with other people who truly understand SMA, what you go through daily, your emotions, etc. You can see Jaime's picture on the left of mine :) That is what it was "supposed" to look like - hahaha - lots of fun! Next time, I'll have to start with a purple sky, then a green tree and sunset grass...

This is me free-handing because I can't paint very well straight up and down on a vertical canvas... LOL. Like I said before, we were all very entertained the whole evening!

I enjoyed it so much that I am going to try to host one myself here in GA to raise money for SMA research! The Walk-n-roll that was supposed to happen in June has been postponed for a few months, so I think I might try having the Sips-n-Strokes in June or mid-July. I'll keep you posted! In the meantime, I am trying to get through my Nora withdraws... I am so ready to go back up and see her and the Goodens again!!! Below is Nora's Mom (Jaime), Nurse Kim in the middle, and me on the right... Thanks Nurse Kim for all you do! To see more pictures and to stay updated with Nora and the Gooden Family, please visit

This Saturday is the 10K (and 2K) for Skylar! Everyone there will be the first to view our awesome new logo and theme for Skylar and our goal to raise awareness. Next week, I hope to post pictures and the logo for all to see. If you feel left out and don't want to run in order to get a "Skylar Shirt", we hope to sell them to raise money for SMA as well :) Lots of stuff coming up so stay tuned. I'm trying to update more frequently, lol. Peace.

Friday, May 13, 2011

Heavy Shoulders, Happy Hearts

As much as we've had happy hearts during this time of celebration and Easter, we've also had some tragic things happen as well that have just made us feel heavy.

Not too long after Easter, the wicked storms passed through AL and the rest of the southeast. We saw the footage of a massive tornado just south of the University of AL. Kyle, having been to our friends' place there, saw the location and knew our friends had to be in trouble. After calling, texting and checking facebook, we learned that they were okay. However, their house had been hit and their roof was pretty much gone. The pictures that followed were rough. It looked as if some giant had come by, ripped the roof off their house and picked it up and shook it all around before putting it back down. We are so thankful they survived, but are so sad for those who weren't so fortunate. Our church is taking donations on Sundays in the atrium and you can see more of what the Christian Service Mission needs to give out - toiletries, blankets, towels, baby stuff, batteries, flashlights, etc. on their facebook page.

This storm was a wake-up call to us as well because we didn't really have a tornado plan of action. We can't just grab Skylar and run into the bathroom and curl up in the tub. If a tornado comes through, the power is definitely going out. Then, stuff will be flying, tossed around, etc. outside of the house. The night the storms came through, just after Easter (Kyle had just gotten home), we pulled the generator in the back room so that it wouldn't get knocked over or blown away. We set up the back-up bi-pap in the bathroom and made a game plan of what each of us would be responsible for in the event a tornado came through. It was scary. Thankfully, the most severe storms split around us and we just had the power flicker a little and didn't have to act out our plan.

The next week, our neighbors down the street had a baby. They had a great pregnancy, an active labor with the baby moving constantly, however, as soon as the baby came out, he was not breathing. After testing, they said he had a condition called HIE (hypoxic ischemic encephalopathy) and he was life-flighted to Northside hospital due to his lack of oxygen. They did a procedure to lower his body temp in hopes of the brain being able to repair itself. The baby was intubated and put on a ventilator during this process. When they warmed him up after 72 hours or so, there was still no activity. They had decided to let him go, but before they did, I had the privilege of taking pictures of their precious little boy and of family members as they said their last words to him. He was a huge newborn and giant of the NICU at 9lbs 6 oz and over 21 inches long! It was truly an amazing honor to be able to be a part of their son's life and to be able to use my talents to give back to a family just like Tessa has done for our family.

Kyle and I were both able to go to his memorial service at our church this past Saturday. We never thought we would be going to another child's memorial before we had one for Skylar. It was a very sad day, but as Christians, it wasn't without hope. Sure there was grief, sadness for the parents and family, anger that this tragedy had to happen, but we have hope that he is in Heaven. There is a cause to celebrate because death is not the end for us. I was encouraged from just reading the book, Heaven is For Real, which helped me picture what Heaven might be like instead of some far off place in puffy clouds. Even though we have not had to bury our own child just yet, we've had to make some of the preparations and have long been mourning the loss of our "normal" parenthood and what is to come, so we've been happy to talk to them. It's been great to share in different emotions and also learn from them. They are amazing people and we look forward to continuing our friendship with them. Another great piece of their story is that their son was able to save the life of a one month old baby girl through the donation of his heart! What an amazing miracle and Mother's Day gift for that family!!!

We also found out that our best friends who are expecting their second boy (20 weeks along) have discovered their baby, Joshua, has a bump on his head called an encephalocele. An encephalocele (in-sef-a-luh-seal) is a rare disorder in which the bones of the skull do not close completely, creating a gap through which cerebral spinal fluid, brain tissue and the membrane that covers the brain can protrude into a sac-like formation, or "bump". The really crappy thing about this is they just have to wait as the baby grows to see how this bump behaves. Obviously, the smaller the better, and surgery is most definitely an option, but only time will tell. The waiting and not knowing can be torturous so please pray for this family if you feel led to do so.

Saturday night, our nurse came over to "babysit" while Kyle and I were able to go to a first showing of a documentary from an organization called Give Us Names. A good friend of ours from college and his roommates have been working on this project for sometime. They've been searching for a way to help all of the injustice they've seen throughout various mission trips and other adventures. Columbia has been their primary focus - finding a way to bring awareness and help to the farmers who have been displaced. You'd think their displacement is from the wars and violence, but it's actually due to the careless fumigations that the US has been doing for years in a lame attempt to control the growth of the cocoa plant that cocaine is made from. It was a great film and very inspiring. They are looking to do showings on a "home tour" where you can host 15-25 people at your house to watch the film together and ask questions about the organization. There will be more large scale viewings in the future. If you're interested, check out their website and how you can be involved!

Mother's Day. It was simply amazing. After I had gotten home from taking pictures in the NICU Thursday, needless to say, my eyes were red and puffy from the tears that fell on the way home. When I walked in the door, Nurse Natalie said I had a delivery of flowers. I walked into the room to find an amazing huge tropical display that could only be from my Dad and Sandy. It was the perfect pick-me-up. The next day, I went through the pictures I had taken of the family and little boy to edit for the memorial and found some more tears to shed. My mother-in-law dropped off a geranium on my front porch in a beautiful lavender color which was another great way to lift my spirits. Sunday, Kyle went to the afternoon service while I stayed home to get ready for the day and get Skylar ready for a bath. My mom dropped by with a cute little planter that is so lovely on our front porch table. Kyle and I were able to bathe Skylar together and as we finished, a news crew showed up at our house! A friend came over to be interviewed and brought me the most beautiful lavender orchids!!! After all, Skylar is my little orchid. Kyle's present to me was a painting of flowers done by a friend of ours from college and he did an amazing job of making me feel loved and appreciated. I've been so spoiled this year and felt very loved by many! Thank you!!!

CBS Atlanta did a sweet story on the 10K For Skylar and our family in general. It was a great Mother's Day gift and aired that night at 11pm (and supposedly the next morning). I was so happy to get some news coverage to raise awareness for SMA. If you're interested, you can watch the video here. ***If you're running the race, please make sure you register online on the official race website, but also fill out the contact form so we know who is on "Team Skylar" and include your shirt size so you can get a special jersey. If you can't run, but want to get involved, hold onto your money because we're hoping to sell the shirts with our special Skylar logo to be revealed after the race. The runners get the sneak peek :)

I also found out that I was the winner of the Gwendolyn Strong Foundation Mother's Day contest and won a ton of goodies that I am looking forward to getting! Pictures will be posted as soon as I get the package since there are things for Skylar in there as well - super excited! Not as cool as Nurse Natalie though who found $10 in a wal-mart parking lot, turned around and bought a lottery ticket with it and won $10,000!!! CRAZY!!! Too bad 31% went to taxes...

For all of you Mothers out there who have lost children, my heart goes out to you. I know Mother's day can't be easy for you and I dread the day I no longer have my little girl to celebrate with me. I have prayed for you and hope you can find peace and reason to celebrate.

In other news, we had our first office visit with Dr. Brooks (pulmonologist) this week. It was AMAZING!!! I could not believe the difference in care we received and the support we felt. It's so nice to have someone in your corner ready to fight with you. We are just so grateful for our new doctor and are excited and hopeful for the care we'll get. We've had some drama with the Trilogy bi-pap I mentioned before. Apria, who told me they could get the machine no problem, has since gone back on their word and was just horrible to deal with. The good news is that after calling a bunch of different providers, Hi-Tech (who just services adults) was able to refer me to PSA who is going to work with our doctor to get us the trilogy! They've been fabulous! It should take 4 weeks and we'll have to check in the hospital overnight to get it, but it should be worth it!

As you can see, we've been overwhelmed with recent events. Skylar has been stable and pretty happy. We're working on her diet and equipment over the next month. Stay tuned. My goal is to post another update after the weekend - short and sweet with pictures :) Peace.

Easter Season

I am behind, yet again in updating you... My apologies. Things are normally crazy busy around here, but since Easter, it's been even more so (if that's possible).

I hope everyone had a very happy Easter. Ours was very very nice. I typically don't get invited out places (understandably so since I am Skylar's full time caregiver and tend to stay at home with her) but my long time best friend from high school surprised me and invited me to a Good Friday service that Friday night. I was very privileged to attend the service at the Verizon Wireless Amphitheater with Jenni and her family. That Saturday, I woke up early with Skylar (unusual since we both sleep in) and she actually went back to sleep not long after. However, I was already awake for the day and decided to read a book. Most of you who know me are probably like, "What?! Ashley read a book?!" Not that I don't like to read, but I just haven't had time to get involved in a book lately since I like to read chunks at a time. This book was so interesting, I read the whole thing in approx. three hours. It's called, Heaven Is For Real.

It was a perfect Saturday morning read in between Good Friday and Easter. I laughed, I cried (thinking about Skylar, what it will be like for her in Heaven, etc.) and could totally relate to this family with their trials. Basically a little boy, Colton, has his appendix burst but is misdiagnosed as having the stomach flu. Five days pass and he has to undergo emergency surgery and the doctor's don't give them a lot of hope for survival. It's not over... More things happen, but eventually Colton is able to go home and it comes out later, in bits and pieces, that Colton "sat on Jesus' lap" and had the angels sing to him while he was in surgery. It's just an amazing honest explanation of this family's story and the parents trying to understand what Colton experienced. It gave me so much encouragement and hope for Skylar. Colton's mom had a miscarriage before Colton was conceived and when he came back from Heaven he asked, "Mommy, did you have a baby die in your tummy?" and then proceeded, "She wanted me to tell you that she's really excited to see you... and she wouldn't stop hugging me." He also claims to have met John the Baptist and his great grandpa who died 30 years before he was born! To think that Skylar will be able to talk and hug me, that she's going to be excited to see me again, that she can hang out with my Aunt Theresa, other relatives who we miss so much, as well as Jesus and other "characters" of the Bible who seem to be so distant just brought me to tears. It's so wonderful to know that it gets better - that "nobody is old and no one wears glasses" in Heaven.

Anyway, I highly recommend the book if you're at all interested in what Heaven might be like - even if you don't believe in Jesus or God - it's a really interesting story and makes for an interesting read. So Easter morning, Kyle got to go to Indiana with my Dad to see my Dad's extended family. Kyle and I have been married for 3.5 years and he just now got to meet my great Aunt Alice, which I was so thankful for. My mom and stepdad and Kyle's parents came over to our house to keep me company and have a great feast. Typically, we celebrate a season of Easter, just like there is a season of Lent and sacrifice. The season of Easter is supposed to be full of celebration, feasting, and enjoying life.

I hope you are able to enjoy this season of your life, no matter what you might be going through. Be intentional. Celebrate.