Remembering Skylar

Today is the day we are supposed to celebrate Skylar turning 2 years old. However, this has not been a day full of celebration. For me, it has been a day of avoiding tears.

I felt it coming. All week has been super emotional (ladies, you know what I mean). I have been dreading today because I knew it would be a day of salt in my wounded heart.

I think today has been the hardest day since we buried her. Regardless of how hard I try to focus on the positive, what I have to be thankful for, I am constantly brought back to the reality that my daughter is gone. A day that I would normally be having a party, making sure that Skylar's world is full of everything that she loves, I have an empty toddler's room. Today is supposed to be all about Skylar. A day set aside to focus on her,  love her and celebrate her birth. If only she were here...

Every time I think about Skylar, tears fill my eyes. Mainly because I miss her, but I am also still mourning the life we should have had if things were "normal" for us. We would be baking cupcakes, running around the park, chasing after kids at her birthday party and who knows what else. I would get to see Kyle as the amazing "fun" dad I know he is... as I get glimpses of him interacting with other kids we know and love. Today has hurt. It totally sucks to be a parent without a child.

I don't even know what to do with myself. There's not a lot to celebrate because Skylar's not here... I could celebrate her birth, but I am reminded that I will never have that birth experience again since SMA took our only daughter. We can't stand the thought of going through that again and are taking measures to prevent it. The last thing I want to do is bake a cake for my baby who is not able to eat it because she's dead. Everything that I would do is pointless without her here. I know she is in Heaven and no longer suffering. That is something to celebrate, but my heart's not able to go there today. She's probably the one celebrating, so maybe that makes up for me not celebrating. In Heaven, she's not bound by time (that I know of) so I don't think there are birthdays to celebrate there. I would guess that every day is a celebration with God, Jesus and all the followers of Christ who have gone before us as we were made to worship. I imagine the story of Colton from "Heaven Is For Real" and picture Skylar talking to Jesus, hanging out with my Aunt Theresa, our grandparents who have passed on, meeting John the Baptist and being amazed by her wings and all the colors around her. That warms my heart some.

The good news is that we were able to spend today with people we love and keep ourselves distracted. Tomorrow is a new day and I will be happy that this is behind me. Thank you for all of the love and support we felt today.

A big thank you to Soteria Productions for volunteering their time to help film the memorial (at a last minute request) and put this together for our family. We are so grateful for your support and help through this journey! Also, thank you to Tessa from Light Love Laughter Photography and Sarah Harms for taking a few of the images used in the video. We love you all so much.

Just a warning that the memorial video is the full length version so if you want to watch the whole thing, please allow yourself an hour to finish it. Also, the beginning clip somehow got flipped so the text is backwards - that will be fixed soon. Peace.

Skylar Marie Jones' Memorial from Ashley Jones on Vimeo.

Catching Up...

Hey Everyone,

I want to apologize for waiting so long to post something. I was trying to hold out until I had the memorial video in my hands since I teased you with that in my last post, but I still don't have it... I realized that if I waited any longer, I would be so far behind that no one would read my post because it would be forever long.

So catching you up on our lives:
Kyle and I went to Greece and we survived. We are still married. Two huge accomplishments after a long and crazy trip. We enjoyed our trip and got to see a lot of amazing places as we traveled from Athens to Crete (the large southernmost island of Greece) to Santorini and back to Athens. However, we had to skip out on Milos and Kea - two islands we were hoping to see - because the traveling was unreliable. There were tons of strikes while we were there. One day we would go to the lobby and there would be a sign that said all taxis were on strike for 24 hours. Then the next day, there would be a sign that all archeological sites and museums would be closed for 48 hours due to a strike. The next day it would be the ports. Then, one day, all forms of public transportation were down (metro, taxis, buses, etc.)! It was just ridiculous.

We had some great stories though. I ran into one of my sorority sisters on Crete... For those of you who know me post college - yes, I was in a sorority, lol. I was the "sober sister" in KD. Kyle and I were walking through a small port town on the southern non-tourist part of the island and all of a sudden I hear, "Ashley?!" Kyle immediately hangs his head and chuckles to himself, "Of course you would know someone here" and I look to see my friend and her mom! It was such a pleasant surprise and we ended up tagging along with their tour for part of the day. We hiked the Samaria Gorge and then went our separate ways.

It was so nice to have some other people to speak english with and have conversation. We also climbed Mnt. Kofinas, hiked to several breathtaking beaches, ate some amazing food, met funny people, explored Santorini, walked around Athens and more. I even got to be a "wedding photographer" for a couple who had just gotten married and were in Santorini. They were trying to take pictures on their camera with a tripod and a timer so I asked them if they wanted me to take pictures. They agreed and I was able to get some really fun shots and they walked away. A few seconds later, I am assuming they walked around the corner to look at the pictures on their camera, they came back and were so excited and thankful for the photos and asked me to be in a picture with them. It was really cool. If you want more stories or more details, feel free to ask me, but I don't want to bore everyone on the blog.

Some not so great stories (besides the strikes) include or bank account being deactivated because we didn't know we had to alert our bank if we were leaving the country with our credit. Then, an ATM machine in Athens ate my debit card. We got stuck in one city for several days because our boat couldn't leave due to bad weather... yes, it rained for days while we were there. Supposedly, it never rains in Greece. We had to pay 50 Euros (approx. 75 dollars) for a freaking taxi ride because that was the only mode of transportation working the night we flew into Athens and they knew they could rip off tourists with a flat fee to the city.

Something else that really hit hard while we were over there was the news that Aleena Miller, the daughter of Stephanie and Aaron Miller (who founded the Hope & Light Foundation) had passed away. It was a complete shock and devastating as we could imagine what they were feeling. Aleena was 7 years old with type 1 SMA and had been fighting with the help of a bi-pap machine and her amazing parents who gave everything for her. She was healthy and had been making a ton of progress with a communication device that relied on an eye-gaze system so her death was completely unexpected. Our hearts and prayers were with that family as soon as we received the email and continue to be as we walk along the road just a few steps ahead of them.

All in all, we have some amazing memories, incredible pictures and funny stories, but we are so thankful to be home. I don't think we realized how isolated we would feel in a country that is falling apart with people who don't speak english. It was not the second honeymoon we hoped for, but the goal is to plan another trip next year for our 5-year anniversary to make up for it. 

Our anniversary was November 3 and we're still in disbelief that we've been married 4 years. So much has happened that makes us feel ancient, and yet sometimes it seems as if we're just coming up on year 2.  We had a nice anniversary though and are enjoying getting out together. For everyone who sent us a gift card to use going out - THANK YOU! We have really enjoyed trying new restaurants, getting out of the house and just having dates again.

The day before our anniversary, Nov. 2, was All Souls Day, which followed All Saints Day. I had not been too familiar with this in the past... Honestly, I can recall hearing the names, especially the Day of the Dead, but knew nothing else about them. Wikipedia will tell you a lot though :) Even though we're not Catholic or Mexican, we really liked the idea of celebrating All Souls Day with Skylar's body. So on Wednesday, we drove up to her grave for the first time since we buried her. It was hard, but good. Sitting by her grave, knowing the only thing that separated us was some dirt and some wood, was so extremely difficult. I wanted so badly to be able to hold that little hand, stroke her soft hair, cuddle up with her and look into those eyes. It was awful. The feeling of separation was almost unbearable. However, it really made me think of the separation that Jesus felt as He hung on the cross. The separation that most of us feel from God. What that is like for eternity. I like to think that God loves us a million times more than I love Skylar and wants to be with us the way a parent longs to be with their child. Anyway, staring at your child's grave will make you think about such things. 

It's hard losing a child in so many ways. One of the saddest things to me is how someone who meets me post-Skylar can't know she was here until I tell them about her. I can look at you (whoever is reading this still) and know that even if your parents are deceased, you had to have a mother and father to get here and at one point they existed. People can't look at me and know that I had a child even though she's gone. So I decided to fix that. I got a tattoo in memory of Skylar on my forearm from my wrist to my elbow. The latin word "Resurgem" is translated as "I Shall Arise" or "I Shall Rise Again" which is what we have on Skylar's gravestone. I had "I Shall Arise" tattooed on my wrist. Right below that is an orchid. It's purple because that is the color I had picked out for Skylar, even though she was stinkin' cute in pink. It's also the color associated with royalty and the color I associate with Jesus in Heaven. The flower has a gold center, also representing Heaven and the light that Skylar was to us. The base of the orchid has three leaves - representing the trinity, but also our family of three. Within each leaf is written "Faith" and "Hope" and "Love" to express how Skylar has helped us to grow and what our priorities are in life. It's my physical "scar" to represent the trauma and pain we've been through. 

When people say, "wow, that's a beautiful tattoo" or whatever may come out of someone's mouth, I can reply by telling them about Skylar, raising awareness for SMA, sharing the symbolism I mentioned above and making people more aware that you don't always know a person's past so don't be so quick to judge. It will certainly be interesting to see all the reactions though because it's a lot bolder than I planned it to be. Skylar's life was also a lot bolder than I planned it to be though so it works. Picture coming soon.

I think that's about it for now. Kyle and I both are slammed with work and are super busy, which is good for the most part. We've recovered from Greece and are so thankful for our amazing support system around us. We'll certainly need it as Skylar's 2-year birthday is coming up soon. I can't speak for Kyle, but if I am being honest, I am not looking forward to that day because I know it's going to be depressing.