Wednesday, August 24, 2011

Missing Skylar.

Skylar Marie Jones. We were so blessed by her short little life. It is hard to believe a week ago, we held her in our arms as she left this world and was welcomed into Heaven and then buried her in the ground. So much has happened in this one week - it is honestly overwhelming to think about...

Kyle built a box for Skylar which was absolutely beautiful. I cried as soon as he showed me the finished project because I was so sad that he even had to make it; I was also crying because it was so perfect for her. I am so grateful to have a husband who can build things and who wanted to build a box for her in her resting place. Skylar really does have the best daddy in the whole wide world.

We drove Skylar's body to a natural cemetery in SC on Wednesday. I know some people are wondering what is so special about SC... (Besides the fact that we went to Clemson) Well, the graves are within the forest and everything is natural - no clear cut fields with giant headstones. There are hiking trails throughout the forest that take you by the graves marked by natural rock from the preserve. A creek flows along the border of the grounds and is so peaceful and beautiful nestled in the mountains. It is a place that we would want to visit again. There is a natural cemetery in Conyers, GA, but we always thought that we might end up in SC some day.

Kyle and I dug her hole, placed her box in the earth with her inside, and buried her. It was so surreal - I couldn't believe what we were actually doing. It was just me, Kyle and our pastor. It was our final act as parents to care for our little girl and make sure she was taken care of until the very end. It was everything I could have ever hoped for in a burial. Our pastor prayed and read scripture when there were no words to say and then we went down to the creek to clean our hands from the clay. It was very symbolic on a number of levels. Kyle's hands were covered in mud and sweat that mixed to look like blood. As he submerged his hands in the water and pulled them out clean, I couldn't help but think of baptism. I thought of the resurrection. I thought about my little girl in Heaven and Kyle and I being complete as parents. "It is finished."

So that was only Wednesday of last week. We then had Thursday and Friday to process things before the memorial. The quiet in our home is deafening. Ever since Skylar was a couple months old, there has usually been a constant noise from her equipment, her movies or her sounds. Not only is it quiet, but it's so lonely. Typically, Kyle or I would be home with her at all times (unless Nurse Natalie was watching her while I ran out to grab food or go to a doc appt.) so that one of us would be here if something should happen. We've traded off church services, tag-teamed gatherings with friends, picked up carry out and brought it home so we could eat together and so on. Now that Skylar is not here, when one of us is home alone, you can't help but notice the emptiness in the nursery. It's sad to see her empty bed begging us to come snuggle up in it. It's hard to stand in the silence because your mind starts to re-visit things. I try to think about her bright eyes welcoming me as I walk into the room, her sweet little hand hugs as I sat with her to watch movies, and her little giggles as I did the most ridiculous things. It usually ends in tears as I realize that I will never get those moments again even though I am so grateful for the memories.

It's so sad not to have her with us. Missing Skylar is what brings the tears. We know she's so much better off in Heaven and so we're not sad for her. We're just sad we're not with her. We know that our lives were meant to go on and we still have purpose to our lives - so we keep going. I'm still holding on to my survival phrase throughout the diagnosis and fighting SMA, "Focus on the positive and take things a day at a time - a moment at a time if that is what is required." You can't dwell in the past because that's already come and gone. You can't live in the future because it hasn't happened yet and you really have no clue what is going to take place. However, you are in the present and you can make the most of the time you have right now. I've also learned that God can meet you in the present for that very reason - it's where you are. I've had to be honest with where I am in the grieving process and it has been tough, but I really feel that God has given me peace and comfort beyond my understanding.

All that to say, when Saturday came, we had already done a lot of grieving and were glad to see the faces of so many whom we love. It was a beautiful service. Thank you Matt, Jeff, Candace and all the others at our church who worked behind the scenes to make things happen and take care of us on Saturday and throughout this entire journey. Thank you Marty for your songs, your music and for your heart. Thank you Kris McDaniel for your time, energy and love that you have poured into our family over the past two weeks. I truly can't imagine where we would be without the consistent love and support from our church family. You have shown us what the church was meant to be. To our friends and family who have walked with us on this journey - we love you and are so grateful. We want to thank all of you who came out on Saturday to love and support us as well - friends, family and co-workers. I know many could not make it who wanted to be there... We hope to post the video of the memorial here on the blog soon so that you can be a part of it and hopefully be comforted by it as well.

We have a lot of people still wanting to know what they can do to help us specifically. Honestly, the thing that we would probably take advantage of the most are gift cards to restaurants. Kyle and I have not been out together as a couple but a couple of times in the past year and a half. As much we are missing Skylar, it's really nice to be able to go out together as a married couple again. We don't really have a budget for eating out all the time though :) Also, I am just going to throw it out there that my comfort food is Yoforia (the yogurt shop around the corner from us). As nice as those things are, we don't need anything. We're doing pretty well all things considered. However, we are looking forward to taking a second honeymoon at some point to re-group and chillax (for those of you who have not seen Despicable Me, that means chill out and relax - you should watch it). Other than that, we're taking it a day at a time and working to figure out our "normal" again. Kyle will be jumping back into work and I am working on launching my own photography and graphic design company.

Anyway, I see that I am back to my normal self typing a novel so I will let you go for now. Stay tuned for the memorial service and more updates. Again, for all of you who are concerned about us and how we're doing, we have a great support system - great counselors, amazing friends & family. Thank you again and peace to you.

* PS - I believe the painting fundraiser this Saturday is full. It will definitely still happen and I look forward to seeing those of you in attendance at Sips N Strokes.

Tuesday, August 16, 2011

Skylar Marie Jones

It is with heavy hearts as we share the news that our precious Skylar is no longer with us. Kyle and I were able to hold her this morning as she took her last breath. We miss her more than words can express.

Our journey with SMA has been a long and tough one, but certainly not without joyous moments and full of love. It is because of that deep love that our hearts are hurting beyond belief right now. However, with that great pain comes great comfort in knowing that she is fully restored and present before our Lord Jesus in Heaven right now. As we continue to grieve, we will also continue to learn how to move forward, how to live and how to love. Skylar has taught us so much in her short little life (just shy of 21 months) and we are so grateful for the wonderful gift she was to us.

For those of you who have been impacted by Skylar, we are having a memorial for her this Saturday for all who want to come. It will be held at our church, Trinity Anglican Mission, at Two O'Clock in the afternoon. We've had lots of people ask already who to make donations to for SMA research instead of sending flowers and we're requesting donations be made to the Hope & Light Foundation. Our church is still accepting donations for our family expenses, but I think we have most of our costs covered now - we'll let you know if that changes.

Thank you all for your prayers and support throughout this long and intense journey. We will continue to need them as we find our way through the grieving process, but have already felt a peace and comfort beyond human understanding. Thank you for all who have sent text messages, emails and facebook messages. Please know that every word is being read, even if we don't respond. We feel so very blessed to have an incredible support system - including our doctors, nurses, church leaders and family, friends, neighbors and of course our own family.

Peace to you.

Monday, August 8, 2011

SMA Awareness Month

Well it's been a long second half of July. We're still trying to figure out what's going on with Skylar... We went to the doctor a few weeks ago and there weren't any definite symptoms of anything, and there hasn't really been any this whole time. We're seeing high heart rates regularly (letting us know she's uncomfortable and possibly in pain) but no fever or anything else. We've gotten a few stomach issues that have come and gone, but nothing consistent (which makes us think it's not just teething). We think there might be some bladder issues, but have no definite test results to stand on with that either.

She's not really able to come off her bi-pap anymore and so we're learning how to live with the equipment 24/7 until she gets better... we know there's a chance that she won't be better though. That's the unfortunate thing with a degenerative disease. We're still getting giggles here and there and tylenol is our new best friend so we're doing alright.

Please pray for our Nurse Natalie. She suffered a severe broken arm last week and will be out of work for months. Not only will we miss her tremendously, but she's got 4 kids at home and won't be getting a paycheck while she's out of work. We are trying to find out what her needs are at this time to see if we can help her family as a community. We'll keep you posted if there is a way to help if you're interested.

A few weeks ago, some good friends of ours from high school had an emergency c-section (the cord was wrapped around the baby's neck multiple times and her movement had slowed) and both survived and were doing well. However, shortly after, the baby was moved to the NICU and was struggling to eat well. Days later, they received the diagnosis of down syndrome (unrelated to the emergency c-section). I went to visit and took some pictures for them. It was a great visit and was so much more full of hope than my last visit to the NICU at Northside. Even though they were facing a serious diagnosis that will change their lives, their child has the hope of living a full life. It may be different than what they imagined, but that doesn't mean the future holds any less importance. In fact, I think it's quite the opposite.

So like I said at the beginning of this post - it's been a long second half of July. As more and more suffering is made visible to me (I learned of a new disease called EB when I found a mom's blog about her child with it and was completely horrified, a friend's family member was murdered last month, a husband abusing his wife and family, etc.), I am just so thankful for the hope that one day we will no longer have to deal with the broken world we live in. I look forward to the time when there are no more tears, no more pain, no diseases, and we are able to live how we were originally created to live. I am so looking forward to getting a hug from my little girl!

I don't want to be a Debby Downer so I'll leave you with some positive updates as well...

Here's the swing picture I promised... Daddy did a great job! We ended up using foam that we had in her crib to make the swing comfortable and it also holds her in place better. We obviously are gentle with the swinging so she doesn't roll out, but she really seems to enjoy it! Her tv is mounted in such a way that we can turn it and watch movies while we swing :)

The GA Chapter of Families of SMA is finally moving forward with events now that we've had some time to get established. We are looking to have a family meet & greet this month so that families in GA can put faces to names and hopefully build relationships with people who are going through the same things in life. More details coming soon.

Our first fundraiser is scheduled for AUGUST 27th! Mark your calendars if you like to paint, want to learn how to paint, or just want to have fun while getting messy to raise money for SMA. We'll be painting a funky owl that you can give to a friend with kids, hang it in your own kids room, or just have in your amazing art collection :) Many of you who keep up with my blog know that I went to a "Paint Away SMA" event in Knoxville, TN to support one of our favorite SMA families - the Gooden Family. I had so much fun that I wanted to do the same thing here in Atlanta and found out the store, Sips N Strokes, has a location in Sandy Springs. The studio holds up to 80 people so make sure you register online at by going to their calendar of events for the Sandy Springs location and then click on the funky owl on August 27th to sign up. The cost is $35 and Families of SMA will be getting around $10 for every person who comes. If you can't make it this time around, don't worry because we'll be doing one again in the winter when there's not much to do outside.

We also support the Hope & Light Foundation and are extremely excited for the "Dine Out Night" event where restaurants donate a portion of the proceeds from one evening of operations to the Hope and Light Foundation. YEAH Burger, which is one of my favorite places to eat (best bison burger and onion rings!!!) will be participating this year so come and join us for the fun on September 22!

Okay, I'll be updating the blog soon with any new details so the next post shouldn't be as long :) Thanks for reading and stay tuned!!!