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.