A Wonderful Weekend!

Sorry it took me so long to update you! Last weekend was the fundraiser and Father's Day! Kyle enjoyed some quality time with Skylar :) while I hung out all day at the fundraiser. Sorry Skylar couldn't come out to play, but hopefully we can do this again in the fall and have the van with the inverter and battery so that Skylar can hang out with everyone.

It was so wonderful. Thank you to everyone who came out to support us and also those who could not be there, but sent in money to our church or to us. We are much closer to getting a van but still have some shopping to do. It's been a busy week and then this weekend I went to my first dealership to see what I could find... I am finally getting around to updating the blog :)


Tessa, with Light Love Laughter Photography was the main photographer who helped put this together for us. Jessica, with Baker 3 Photography, and Chris, from Shooting Babies Photography, donated their time and skills to take pictures with Tessa on Saturday while I was able to mingle and jump in and take pictures here and there. It was great! All of the pictures you see on this blog were pictures I took from the fundraiser :) It felt so amazing to be behind a camera again... For those of you who don't know me that well, before I became a mom, I was doing my own photography and graphic design work and absolutely loved it! Saturday was so refreshing to spend a whole day outside, taking pictures, getting to see old friends and meet new ones. A huge thanks to Tessa for donating so much of her time and energy!!!


The fundraiser was a success - we raised over $2,000 just on Saturday (if anyone orders prints from their photo shoot, we get those proceeds as well so there's potential to raise even more money). It was a beautiful day - sunny until the late afternoon when we had one 5 minute downpour that quickly cleared up and we were able to finish our pictures. We had lots of friends, families, babies and pets come out to participate - it was fun!


So many people came out, it was really amazing. A dear friend of mine helped the entire day at the registration table, two friends from South Carolina drove down for a photo session, along with my friends from Canada who were in town, a long lost friend from Clemson (also named Kyle Jones) surprised us with a visit with his wife and new baby, friends of Tessa who hung out and helped with food, some friends from high school I hadn't seen in over 7 years, some friends of my parents, a friend who came straight from the hospital with her husband, and a couple from our church who just had a baby two days before the photo shoot and came out to support us! There were many more of you who came out - believe me, I would name everyone if I thought people would read all of it, lol - but a lot of people from church, friends from school, friends of friends, etc. and we just want to say a big THANK YOU to all of you!!!


Yesterday was my first time out looking at vans. I went to a VW dealership in Marietta because we have a good friend who works for VW and could help us out. The VW Routan is still fairly new so the prices on used ones are still high, but they were really nice! It was the first place we looked in person (we've looked online some) and we still have a lot of shopping to do before we decide on one. We'll keep you posted though! I am so excited that a van is becoming a reality for us - it really will make going out possible and hassle free.


If you missed out on the photo shoot, but need some current pictures or are looking for an event photographer, please contact Tessa (www.LightLoveLaughter.com) because she's going to donate a portion of her proceeds from her bookings in June to our family as well as any photo sessions booked related to the fundraiser. One last thing to mention for those of you who came to the photo shoot... once the pictures are up (I'll post a link when they are) but pass it along to any of your friends or family who might want to order as well. Tessa is seriously a huge blessing and is giving us all of the profits from prints ordered too. Please give her your business and keep her in mind for the future - I have no doubt that God will bless her!!!


Well, I hope you enjoyed a few of the pictures that I took from Saturday and I am excited to see all of them online that the other photographers took. I'll let you know when they're up. As always, thanks for reading :) Have a great week!!!

Fundraiser Tomorrow!!!

I can't believe it's already here! It seems like Tessa and I talked about this years ago... I think it may have been a few months, lol, but anyway, you get the point. I am so excited to see everyone for the photo shoot fundraiser - we have some friends from South Carolina driving down to be there and I also have a friend who literally had a baby just a few days ago who is going to try and come!!! I think we have a pretty full schedule, but we have one or two photographers on stand-by to take people who haven't signed up and surprise us :) It should be a great day!

We are so blown away by everyone's generosity and excitement over this fundraiser for our family and can't wait for tomorrow! I will be there the entire day - Kyle and Skylar might make it out, but it depends on how she's doing and the weather... she doesn't survive the heat very well. We have a lot of great food and drinks and even a birthday cake for Skylar's 7 month birthday (compliments of McEntyre's Bakery - they did our wedding cake - AMAZING!!!). So again, thank you to everyone who has donated money, donated breast milk for Skylar, sent us cards, brought us meals, and prayed for us. It DOES make a difference! We are still standing - and surprisingly doing well all things considered!

I have to switch topics for a moment here because some of my last posts have got me thinking and I've had a lot of great conversations lately... I said this a week or so ago, but if Jesus were a person, physically here on earth, I would be doing everything in my power to get to Him in hopes of seeing Him, touching Him, having Him speak to me, etc. all for Skylar's healing. I was going to write in my last blog, something along the lines of, "I'm doing everything that I can to do that now..." (get in front of Him, listen to Him, etc. etc.) but I stopped typing because I realized I wasn't. I have been too busy just trying to live out a "normal" day that I haven't been reading my Bible. I definitely pray, but not as often as I should in a situation like I am in, and I certainly have my mind on other things - although important, I still shouldn't overlook my relationship with God. I do think about serious topics a lot and always want to know what God wants me to do, how to act and how to pray, but I have slacked off with pursuing Him, especially reading scripture and being still to hear His voice.

I feel like I have grown so much as a person since Skylar has come. Seven months... wow. I feel much older, wiser, and I think I have a greater understanding of this life from just 6 months ago, but there is still so much growing to be done and I certainly don't claim to have all the answers. I am trying to spend more time reading the Bible, praying, and literally doing all that I can to get in front of God on Skylar's behalf, and mine. I am not expecting to be perfect, there will be days that I screw up - probably lots of them, but I am expecting God to show up and meet me where I am.

So my attempt for today: I thought it was funny though because I opened up a "devotional" book if you want to call it that, and the page I opened to had two titles, "You Must Fight For Your Life" and "What Is Seen Is Temporary, But What Is Unseen Is Eternal" - really God? Can you speak more directly to me?! I had to laugh. The scripture quoted was 2 Corinthians 4:16-18 which says... "Therefore, we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and monetary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but what is unseen. For what is seen is temporary, but what is unseen is eternal."

Now I have to stop and say I always marvel how pastors can take one or two verses and create a whole sermon out of it, but I think these verses make it easy. Don't worry, I am by no means a preacher and won't write a novel, but I was just so amazed how much these verses contained. Not losing heart... that's such a struggle for everyone - not just those who are in a time of suffering. Physically wasting away, but somehow being renewed daily... that is the story of my life right now. What is this eternal glory? And these eyes... maybe not our eyes in our head but those in our heart? I so look forward to the day when there is no suffering and Skylar can run around, smiling, laughing, and feeling wonderful the way she should. I am hoping that day will happen here on earth for her, but I might have to wait until we get to Heaven to see it.

I am so thankful she's made it to 7 months and is still doing well. Even though she's getting weaker (she just gets tired more easily and her breathing is getting harder for her to maintain on her own the whole day), we've managed to stay out of the hospital due to infections or collapsed lungs. She's still moving her arms some and wiggling her feet and she still smiling every now and then. I even got a giggle from her last night when some friends were over. Music to my ears and a joy that fills my heart! Even though I know the end is drawing nearer and it's becoming more of a reality for us, we look forward to celebrating each day with her and still hope for a miracle... I won't stop asking God for that until she's been buried.

Thanks for reading - have a great weekend and we'll hopefully see you at Whittier Mill Park sometime Saturday :) Peace to you.

Walking in the Fire...

So I know I just posted two days ago, but I thought everyone would like to know that even though yesterday was a rough day, today was a great day! Not only did we have many fun visitors (Grandma, Miss Rhonda, Ashley Manross and her daughter Kensington) but we had a day full of laughs, giggles, and a few squeals! I seriously haven't heard the squeals for months and wasn't sure if she could even still muster up the strength to do it, but alas, they came out today! She dropped a few times, but nothing we couldn't recover from and we just enjoyed spending time together. Not that we don't every day, but today felt different for some reason. I tried to leave a message on daddy's phone with her laughing, but I don't think anything was audible on the voice message except for me making ridiculous sounds to try and get her to laugh, hahaha.


I also forgot to add a picture of the new shelf in her nursery and since I am up waiting on her nebulizer treatment to finish, while everyone else is asleep, I thought I would do another post with pictures. Below you will see the awesome shelf Kyle's family bought us from Ikea for the nursery! I had a lot of fun going to Target to fill up the squares with bins to add some fun color to the room!!! I almost measured everything before I went to the store to make sure I got stuff that fit since all the squares are different, but then I thought, no way! that's not an Ashley thing to do... that's something Kyle would do :) I lucked out big time! Everything fit perfectly and the colors are so fun and cheerful. Plus, they had a bit of "girl" to the room since everything was gender neutral.


So let me explain... On the top from left to right: the frog humidifier, the scale to check her weight with a stuffed animal on top, her gray suction machine with a lovely collection of mucous in it, and her pulse ox machine (the white box which has two black screens with numbers - the top small black box contains red numbers which represents her oxygen levels that I talk so often about and then bottom black box contains green numbers which represent her heart rate) and one of those cool fiber-optic fun lights. Second shelf from left to right: extra supplies, the big green polka dot crate has her suction catheters that we go through daily, the solid green crate has her feeding bags that we go through daily, the little pink box in between has misc. supplies like tape... and then the last box contains the gray cough assist - aka the scream extractor (for those of you who have seen Monsters, Inc.) or the big elephant. Small shelf below just has misc. medicines, emergency supplies, ambu-bag, etc. Bottom shelf: first purple bin has all extra tubing (for oxygen, suction, etc.), long green basket has catheter kits and vent bags, second purple bin has all of her padding, gauze, etc. like mepilex or duoderm and then the last little pink box is random medicines. To the left of the whole shelf unit, you will see a weird looking gray machine which is an oxygen compressor (I think it is called) where it basically takes oxygen from the room air and purifies into pure oxygen and also humidifies it. This is where we would go first if Skylar needed O2. What is not in the picture on this same wall are all of her travel oxygen tanks (7 total) stuffed into the corner by her changing table and then her IV pole with her feeding pump by her crib. Somehow, it still manages to look somewhat like a nursery :)

Random change of topic... my small group leader from our church always used to find a way to reference Shadrach, Meshach and Abednego. We would always laugh, because in his Brazilian accent, he would say, "You know guys..." and we would all smile knowing the rest of his sentence would finish with, "it all goes back to the three amigos." to which we would all bust out laughing. He would then feel the need to defend himself and explain how awesome these guys were, but it made for good conversation and it actually did relate most of the time. So as I am sitting here doing my best to stay awake waiting on her treatment to finish (I got a late start on it) I decided to look up stuff online relating to the Bible instead of actually reading it. Sometimes, I can read it and not make any sense of it, and I felt like tonight was going to be one of those nights... so here I am on my computer. I had to think - what do I search for or what do I read? If I am not reading a certain book, usually I will just flip open my Bible, thumb through some pages and see where I end up. Not saying that God always speaks to me this way, but a lot of the time I end up with something very applicable or relevant. I guess some would argue that it all is that way, but back to the point. My small group leader had referenced "the three amigos" so much that I decided to google search for them to see what more I could learn.

If you don't know the story, I suggest you take some time to read it because it's a really cool story (and a great veggie tales movie, lol), but basically this King forced everyone to worship the gold idols and anyone who didn't would be thrown into the fire. When these three men refused, the King threatened them and they replied, "If we are thrown into the blazing furnace, the God we serve is able to save us from it, and he will rescue us from your hand, O king. But even if he does not, we want you to know, oh king, that we will not serve your gods of worship the image of gold you have set up.” This is from Daniel 3:16-18 NIV. He ordered his strongest men to tie the three up and throw them into the furnace. The king made it so hot, that the men who threw them in were killed. He quickly asks for confirmation that there were only three men thrown into the fire and notices a fourth person "...walking around in the fire, unbound and unharmed, and the fourth looks like a son of the gods."

So as I was reading this, and a blog I found about this as well, this story became very personal. These guys walked faithfully, knowing God could save them but open to the reality that if He didn’t, it would not change what they believed or who they believed in. The blog stated, "Unwavering faith creates amazing experiences with God. His presence is always with us, even in the flames of life." I couldn't agree more. I feel like our family is threatened by the flames right now. There is nowhere to run and no other option but to face them head on and hope that God chooses to save us from the furnace. BUT, if not, we will still believe He is God and we trust His word is true. Thanks for reading my late night ramblings :) Her treatment has been done for a little while now so I am off to bed!

***One quick thing, if you are planning to come to the fundraiser make sure you sign up here to reserve a time with a photographer! If you don't know about the fundraiser yet, there are a few details on the "help fight" page of Skylar's website, but you can find pictures and even more details here. Thanks for bearing with me as I am constantly learning and sharing my raw thoughts with you through the process. Peace.

Roller Coaster Of A Week...

Our GI check up and pulmonologist appointment went well last week. Skylar was almost 11.5 pounds and her lungs sounded clear. Her heart rate has gone back to normal and she's been giving smiles again. However, Thursday after her pulmonologist appointment, she dropped three times into the 70s and it was exhausting - for her and for me. I put her on the bi-pap for the night and hoped for a better Friday. Skylar did well for most of the day and then in the evening, the alarm sounded and it was forever getting it to stop. Her oxygen stayed in the 80s - all over the place - for a good 20 minutes at least (which seemed like an eternity). After using the cough assist, suctioning every place the catheter would reach, and still having no progress, I just wanted to cry... Not only because I knew Skylar was struggling, but also because I couldn't help her and I know that there will come a day where I won't be able to save her. Thankfully, she stabilized, I put her on the bi-pap and she slept through the night. I collapsed on the couch and was totally exhausted in every sense of the word. She did well over the weekend, then had a repeat of what I just mentioned Sunday and Monday. Thankfully, the past two days have been "normal" and she's been great (which also means that I have been great too).

Living day to day is our only option - if we think about the "what if" or the "what could happen" we won't survive. I can't even begin to describe the heartache I feel some days... I don't want to depress everyone reading this, so I do want to let you know that I have great days too. When Skylar smiles, especially when she giggles, I can't even begin to describe the joy in my heart. I am realizing more and more what a gift she truly is to us and those who know her. The love we've felt and the way God has moved so far has been nothing but amazing, for lack of a better word. With the fundraiser coming up and people sending in donations already, we're extremely blessed and want to thank all of you for your generous hearts. Tessa, the photographer who is heading this up, made us a website at http://www.skylarmarie.lightlovelaughter.com to promote the event. We also have an event on facebook as well as more information on the "help fight" page of Skylar's website. If you're planning on attending the fundraiser, be sure to sign up for a time so we can make sure to have a smooth schedule that day :)

So back to my crazy week and thoughts in my head... Sunday, the sermon was speaking from the text Luke 7:11-17 about the widow from Nain whose son had passed and Jesus raised him from the dead. Jesus had compassion on the woman and raised her son from the dead, not because he deserved to live a little longer on earth, but because Jesus saw the mother and had compassion for her. I have thought a lot about how things work these days - Jesus versus the Holy Spirit. If Jesus were here on earth right now, you better believe I would be doing everything possible to get to Him, to catch a glimpse of Him, to touch Him, to be seen by Him and beg for His healing hand to touch Skylar. However, He left us with the Holy Spirit instead... How does that work then? I feel like screaming at the top of my lungs, "DON'T YOU SEE ME??? CAN'T YOU HEAR ME??? WHERE IS YOUR COMPASSION???" but I know it doesn't work that way. I am not entirely sure how it works really, but I am waiting in hope, praying that God would see me, that He would hear me, and that He would have compassion to heal Skylar.

I stumbled upon another Ginny Owens song called "I Am" that I haven't listened to in years, but was really encouraged and reminded that no matter what God asks of us, no matter how inadequate we feel to carry out His plan, it's not our problem...

No Lord, he said, you've got the wrong guy.
Simple conversation gets me tongue-tied.
And you're telling me to speak with a maniac king.
Could it be I've lost my mind?
And besides, I am weak, don't you want someone strong,
To lead them out of Egypt when they've been there so long?
And anyway, they wont believe You ever spoke to me.
That's not your problem, God replied.
And the rest is history.

There's a bigger picture you can't see.
You don't have to change the world, just trust in me.
'Cause I am your creator, I am working out my plan,
And through you I will show them, I Am.

Now Lord, are you sure? He's just a shepherd boy,
Too small for battle gear with a giant to destroy.
What on earth can he do with five stones and a sling?
That's not your problem, God replied.
'Cause I can do anything.

There's a bigger picture you can't see.
You don't have to change the world, just trust in me.
'Cause I am your creator, I am working out my plan,
And through you, I will show them,
I Am the first, I Am the last,
I Am the present and the past,
I Am tomorrow and today,
I Am the only way.

Great Lord, she said, I'm just a simple girl.
You say that I will bring your son into the world.
How can I understand this thing You're gonna do?
That's not your problem, God replied.

'Cause, there's a bigger picture,
And you don't have to change the world.
I'm your creator, I am working out my plan.
And through you, I will show them,
There's a bigger picture, you can't see.
You don't have to change the world, just trust in me.
I'm your creator, I am working out my plan,
And through you, I will show them, I Am.

So that's the end of the song... I feel like adding my own verse:

Please Lord, she said, Skylar's just a small child,
I don't know if you're gonna to take her, or let her stay a while,
How can I understand what You're going to do?
That's not your problem, God replied.

Anyway, it's been an emotional week for me, but it's been good. Kyle and I have had some good discussions too... We're at the point where we have to build on the property we own (that has an un-livable house rotting on it) or sell it so please pray for us in that decision. We both fell in love with the property two years ago, but can no longer afford to keep it in its current state and are trying to figure out if we can afford to build a tiny little bungalow (we didn't get chosen for Extreme Makeover Home Edition unfortunately). We have some other big decisions too - to buy or lease the van we're going to get is one of them. We're in the application process for medicaid (please pray for speed with that because they move slower than snails and find every way possible to delay you). We are also trying to get a nurse to come to our house to help me - even just cleaning her equipment and doing her feeds and the dishes associated with that would be a big help. I'll keep you updated :) Thank you for all of your prayers!