Kip, Angie, Noah and Lily

Tuesday, January 26, 2010

looking through a different lense

I purchased our lots in the Oconee Hill Cemetary today. Of course, the main reason for purchasing now was so that we would have this decision behind us if Hogan doesn't live long. It is something that has been a very important decision for me. I wanted the place that my little boy might be put to rest to be special. It doesn't really matter about where I will be buried but this is my son. If you are reading this and have gone through something like this you probably know how I feel, especially if you are a dad. I know that I probably won't be able to buy my son a train set or a puzzle to play with or take him to a ballgame. I feel the only thing I can do on this earth is to make his resting place as honorable and peaceful as can be. I know his soul will not be there. It is important to me because his life, no matter how long is just as important as any other life to me. He has already been such a blessing to our family. I have been over to the cemetary at least a dozen times in the past month trying to find the right area. It was a blessing that a new part of Oconee Hill had just opening up. We got to pick one of the first few lots in this area which is a small section and surrounded by beautiful old hardwoods. I can't explain my emotions but the fact that this decision is over helped to let me realize just how serious this little life is to me. The closer we get to April more excited I am getting at the thought of getting to meet Hogan. This was the case with Noah and Lily but this time I know this is our last pregnancy, so it makes it even more special. I was really looking forward to this third child because I thought God was allowing me to really enjoy the birth of Hogan because I didn't get to enjoy Lily's quite as much because my dad was passing away about the same time she was born in 2008. The irony is that I will cherish this birth and enjoy every second because of having the knowlege of Hogan's condition. I pray that God will allow us to the chance to meet him with a live birth. We are very thankful for another week with Hogan alive in Angie.

There are so many images that I will already never forget and there are many ways that we have been able to see God working through the past couple of months. This is one of them...

When Angie and I had a little time to soak in what the doctor had told us that Monday in November we both knew that no matter when and no matter what the condition, we wanted to make sure we captured Hogan with picture images. It was a hard thing to plan because the doctor told us that our child could pass away any day up until delivery and that many babies with Trisomy 18 didn't make it full term. Angie's baby doctor told us that the way we would find out that he was no longer with us was if Angie didn't feel that baby kick for a few hours. I honestly wish I hadn't heard her say that because now, I always wonder when the last time Hogan kicked!? It is something Angie can feel but I have to wonder about until she mentions him kicking or I just come out and ask her! just needed to come get checked for a heart beat if Hogan didn't kick for a few hours and then if there was no heartbeat then she would send us to St. Mary's. Well, how do you schedule a photographer to be "on call" when you have no idea when the birth is going to take place over a 5 month span? Also, if you did happen to get a photographer to volunteer to take the pictures, would the photographer be comfortable taking pictures if Hogan was no longer physically alive? I knew that I had to find someone or at least have a plan. If you have ever been anywhere with me or spent much time with me at all then you know there has to be a plan!

I knew a good friend of mine in middle georgia that I hoped would agree to take the pictures. He has always been a great friend and is a great photographer. I told him about the situation and he said "whatever you need me to do, I will do it". That was such a relief to find a friend that would be there if needed to take the pictures of Hogan and the moment. My only concern about this was that he would have to drive a long time to get here and if something happened quickly he might not get here in time or just in case he was out of town or unable to make it for some reason when the time came. So, I wanted to have "plan B"! I wanted someone that lived in Athens or really close to Athens. Angie and I talked about it and we thought of a friend that might be willing to do this for us. I emailed her to see if she would be willing to take pictures for us at the hospital. I hated to put her in an awkward postion because I knew this was a very different situation.

After I sent the email off I noticed some similarities in a few of the pictures and videos that I had seen online while reading about Trisomy 18. The letters NILMDTS were on a couple of the photos and a video that I had watched. I googled NILMDTS to see if I could find some information. I found out that NILMDTS stands for an organization called "Now I lay me down to sleep". I read about what this ministry was all about and it sounded like it might be just what we were wanting! I emailed a representative in Atlanta and told him about Hogan and asked if he could take pictures of Hogan when the time came. It wasn't long before I got an email back saying that he couldn't do it but there was a local person here in Athens that might could help. He gave me her contact number and within and hour I had talked to her and she basically said she was sorry about what we were going through but that she would be there for us to take the pictures when we needed her! She went into detail about how she would handle the things. What a blessing! She was just what we wanted! She is trained to do this type of thing. She is a part time nurse at St. Mary's where we will have our baby and also an incredible baby photographer. How amazing is that?! She gave me her cell phone and told me to call her on the way to the hospital. I pray that we make a happy call to her in mid April!

I would have never known about an incredible group like NILMDTS. There are so many good people in our world with amazing talents and amazing hearts! Hopefully we will get lots of other pictures later in Hogan's life but if a miracle doesn't happen it is such a blessing to have photographers that donate there time and talent to do this because these images may be the only visual images here on earth that we will have.

This is a video that was put together for Trisomy 13 and Trisomy 18 families. It was this video that led me to Teresa, our local NILMDTS volunteer. This video is filled with images of Trisomy 13 and Trisomy 18 babies. These two conditions have a similar fate but a few different characterstics.


  1. Kip we have a friend here who has a friend there with NILMDTS ... she said she is a wonderful photographer ... if you still need one let me know and I'll get you her information.

  2. I found your blog via Angie Smith ( and just wanted to pass along my prayers. I live in Gwinnett Co now but was born in Athens. (Actually I was born at St Marys) I'm praying for Hogan and both of you!