Noah

Nathan and I have been waiting for the "perfect" time to take Noah to the cemetery. For months we have been trying to figure out what we were going to tell him. We finally decided that we weren't going to try and give him some elaborate explanation, that he may or may not understand. We just took him to Evan's grave and showed him the headstone. We did not tell Noah that Evan was buried there.

He was pretty much aw-struck. He liked the picture of Evan on the stone. He knelt down and touched it. Then he ran around like a little fool. It is truly amazing how children are spared the pain. Noah was really just impressed with the toys he could play with. While Noah did just fine, my heart was breaking inside. We actually had to take our 3-year old to see his brother's grave. How sad is that?

Today, Noah and I returned again. The rain has left residual dirt on the stone, so we went to clean it off. Noah and I then went up to the pond to see the ducks. He loved that. This was another moment in which I realized that this is our life now. Going to the cemetery to see Evan is part of our life now. There are no more birthdays with Evan, or holidays taking pictures of both of my boys in their little matching outfits. On every holiday or special occasion, going to the cemetery to see Evan will also be a priority. That is what we have now. And Noah, what about him? He doesn't have Evan to run around playing superhero's with. He doesn't have Evan to ask questions or tell him what to do. Lately the weather has been nice, so all Noah wants to do is play outside. It is so sad to see him playing by himself, knowing that Evan should be right by his side. It breaks my heart that Noah has to grow up without Evan. Evan should be there right by his side through everything, but the reality is that he is gone, forever.

After returning home, I sat crying in my own self-pity wondering why? This is one of those days when I just want to scream at everything and everyone who comes my way. MY CHILD IS GONE AND IT IS NOT FAIR!! Our lives are shattered and there is nothing anyone can do to fix it. We just have to somehow learn to live with it.

Reality

As I very well know, life can drastically change in a single moment. I found this out the hard way 91/2 months ago when I found Evan dead in his bed. The members of First Baptist found this out just recently. Watching the events of that day unfold moment by moment was a harsh reminder of pure evil. What is this world coming to? These things are suppose to happen in big cities trashed with street crime. Right? The shooting of Pastor Winters happened where my child attends preschool. How can that happen? This is when I get really angry at the world. It's just not fair!!!

I just cannot get his wife and girls out of my mind. While my loss is different, the long, hard journey of pain is the same. I hate that someone else has to endure this awful torture of trying to pick up the pieces of life and try to live again. I still have not figured this out and I am not sure I want to.


Speaking of Pastor Winters, Nate and I visited Evan yesterday. To my surprise Pastor Winters was buried just a few feet behind Evan. This brought such a sense of comfort to me and that doesn't come easily these days. Still we found ourselves asking why? Do we really have to go to a cemetery to visit our child? Will I ever wake up?


On a lighter note, one of my dearest friends turned 40 this year. She wanted to go on a cruise, so we all went. Nine girls total!!! It was such a needed break from reality. I spent weeks promising myself I was going to have a good time and not ruin anyone else's trip. The trip was awesome and so were the drinks!! It felt so good to laugh again. It actually gave me a little hope that maybe I truly am capable of being happy again. But, how can one truly be "happy" after losing a child? Someone please tell me! But with the fun of going on a cruise comes the overwhelming amount of guilt. This is something that Nate and I have struggled with since the beginning of this journey. Each time we find ourselves smiling or having a good time, the sense of guilt creeps in. My child died so how can I smile or laugh about anything? This is when I remind myself that we still have Noah! He brings the smiles and laughs that we so desperately need. A huge blessing!

Another thing...Tonight as I sit here writing this, it is raining outside. And of course I am thinking about my precious little boy out in the dark, cold, rain! Just another horrific thought running through my head. It happens alot!

This is definitely one of the posts I have been dreading, but need to do. Just when I think we are doing somewhat better, something happens sending us in a backward spiral. Last Tuesday Evan's headstone was put in the cemetery. I cannot begin to say how incredibly surreal and painful it is to walk through a cemetery and see your child's name on it. It was another huge slap of reality. I know that Evan has been gone for nine months, but somehow seeing it engraved on a headstone made it that much more permanent. I know he is gone and not coming back in this lifetime. The monument itself is very beautiful, but at the same time, I should NOT have to see it. This is something a parent should NEVER experience!

While many people have already gone to visit Evan and see his headstone, we still have not taken Noah out there. Nate and I are trying to prepare him and hope to take him soon. In his innocent little mind, Noah believes that Evan is up in heaven with Jesus. While this is true, taking Noah to the cemetery and telling him that Evan is there also will drastically confuse him.

I thought I should mention one thing that has really gotten to me. When we first found out about the cough medicine being a major factor in Evan's death, I really tried hard not to blame myself. Obviously, this is easier said than done. When I was looking at the monument, all I kept thinking was the medicine that I gave him put him there. While the logical side of me knows that I had no way of knowing about his liver, the emotional side of me cannot control the thoughts running through my mind. Seeing his "permanent" monument just deepened the horror that much more. I just kept telling Evan how sorry I was. I just want to plaster the picture of his monument everywhere and say, this is what cough medicine did to my child!

Memories

The past few days have been especially emotional. I am lucky to make it an hour without crying about something relating to Evan or this awful new life we are living. Yesterday, Nate decided to convert some the last video of Evan onto DVD. Until now it has been way to difficult to watch these home movies. I thought to myself, I want so badly just to hear his little voice again.

We started watching some of the videos from when he was around two. He was just so small and so sweet. I had forgotten how cute his little voice was! We then watched video from last Christmas. I never would have imagined that it would be our last Christmas with him. Little did I know that we only have five months left. We also watched his sixth and last birthday. Evan was six years old! He had become this handsome, happy, grateful child! Then, I only had days left with him until he became an angel. This was one of the last pictures ever taken.



Watching the videos was incredibly gut-wrenching, but worth every last minute. The entire time I kept thinking of how cheated we are not to have him here on earth. We don't get another Christmas or another birthday. Our reality is pictures, videos, and memories. That is all we have left of our precious little boy. If I could write a book, it would be titled "5 Minutes". I would give anything in the world to just have 5 more minutes with Evan. I would just love to hear him, to touch him, and hold him one more time. Please God, just 5 minutes?

Genetic Testing

Well, we made our trip to Indiana and managed to make it back safely. We got the privilege of meeting Dr. Flockhart, who did Evan's genetic testing, or at least some of it. Due to the results, Dr. Flockhart wanted to test all three of us. (Huge Blessing!) We are primarily focused on Noah and to also determine which side these "gene variants" come from. It was so nice to sit down face to face with someone who has some answers as to how my child died. So, we got to spit in a cup for 30 minutes. Yes! I said spit...It is truly amazing how much you can learn from spit!

During the meeting, Dr. Flockhart elaborated on the scope of the testing. As I stated before, one side of Evan's DNA was normal and the other was faulty. They found two variations in the genetic pattern. One has been identified, and the other, they have NEVER seen before. They are now going to send the DNA off to another lab to be further analyzed. He did recommend completing the Long QT test, so I will be taking that to the coroner's office on Monday. Finally, after 8 months I feel like we are making progress. The rest of the meeting, we were just trying to make sense of all the "medical" lingo doctors oftentimes use. That in itself can be quite exhausting!

As for Noah, he was so great on our little trip. After 31/2 hours in the car, he was eager to get out and start charming the hospital staff, as you all can imagine. The spitting part was also fun for him as well as entertaining for us to watch! We then took him to a HUGE indoor water park. He was more that thrilled! He loves to swim...

Answers

On Tuesday, we recieved a call from the University of Indiana, which tested Evan's blood for genetic abnormalities. Dr. Flockhart explained to us that Evan's liver was lacking the proper enzymes that would normally allow him to "break down" chemicals in the body. Evan was given cough medicine the night he died, therefore contributing to his death. This is genetic. The testing also revealed another genetic mutation that they were not able to identify. DNA has two components. One component was perfect and the other showed severe genetic mutations. Further testing is going to be done to determine what the other mutations are. Only one has been confirmed. Nathan and I are going to Indiana next Friday to be tested to determine what side these mutations come from. My biggest fear now is that Noah may have the same condition.

Right now I am still trying to process all of this information. I feel hugely responsible and guilty for giving him the medicine. I am really still so numb and very much overwhelmed. Everyone can say that giving medicine is what every mother does, but that is easy to say when it is not your child that died.

On another note, there has been much debate over the use of cough and cold medicines for children. What they don't tell you is the statistics of death among children, mine now being one of them.

My Awesome Family!

This is how incredibly awesome my family is! Instead of having a traditional Christmas party, they decided to meet at Build A Bear Workshop on December 21st. They all made bears in honor of Evan. The bears were then distributed to long-term patients at Cardinal Glennon Children's Hospital. How awesome is that??? In all, 29 bears were donated. Because of Evan and my wonderful family, 29 sick children had a smile on their face! This is the best Christmas present I could have gotten this year. Nathan and I were so honored that my family wanted to spend Christmas this way. A BIG thanks from the bottom of my heart...


Another great thing about the day was getting to spend it with Evan's cousin Abbie. The two were in the same kindergarten class together last year, and spent alot of time together. Abbie was certainly a special part of Evan's little life. I love you Abbie!!