Kevin's terminal diagnosis.
We woke up on New Years eve. It had been a crazy couple of weeks. We had found out that Kevin suffered from CDH and then that the first test results were negative for the most common genetic disorders. We had already started planning for the months we would be spending at the Children's hospital of Philadelphia.
The first step was getting my mom to Virginia help us care for our other four children. We knew it was going to take everything we had to get Kevin through this, and needed help to just to make sure the other kids were ok. The weekend before New Years consisted of me driving to Indiana to pickup my mom.
It had been an exhausting few weeks but when we woke up on New Years Erica and I both had a feeling everything would turn out ok. We knew it was not going to be an easy journey, but we knew in the end our family would be complete, and we would bring Kevin home. We decided to have a normal day and take Anton to go buy a game at Gamestop.
We got in the car joking with Anton and me and Erica smiled and we were ready to deal with all life had to throw at us. Or so we thought. We had barely gotten on the main road from our housing area when I heard the phone ringing through the speakers in the van. I did not recognize the number so hit accept call and then I heard it. "This is Debbie the genetic counselor from the Naval Hospital." Since we had not told the kids about the birth defect I quickly took the phone call off of speaker phone.
The first thing she asked was if I was driving and when I told her I was she immediately asked me to pull over. I remember Erica whispering "oh no", and leaning towards me to listen to the conversation.
I honestly don't remember much from the conversation, but remember Anton's confused look as Erica sobbed when the words "not compatible with life" came through the phone. He could not hear the conversation but it was obvious that something bad was happening. When I got off the phone all I wanted to do was hold Erica and comfort her, but we both knew that the Taco Bell parking lot in front of our 15 year old son was not the place to come to grips with this reality.
We got home and I told Anton to go in first and go upstairs, and Erica and I took a few deep breaths and started into the house hoping to hold it together long enough to get upstairs so my mom and Anton did not see us break down completely. We went into the door and instantly my mom's face changed. It must have been obvious that something was wrong. We started up the stairs and Erica dropped, unable to take the news. I helped her up and led her to the bedroom as she cried out, "I can't do this" and "How are we going to make it.?"
I got her into the room and laid her down in bed and held her as she sobbed. It broke my heart to watch my wife lay there as her world crashed down around her. The hope we had just a few minutes ago was gone and had been replaced by the crushing reality that our baby was not going to make it. As Erica calmed down I knew I had to go talk to Anton. I was not sure how he would react as he is autistic and does not always have normal emotional reactions.
I went in his room and he was staring quietly at the wall. There was no game controller in his hand and the screen to his TV was black. I knew he was upset and sat down and asked him if he understood what just happened. He answered simply with that he heard the lady said genetic counselor and that he figured something was wrong with the baby. I explained everything that had happened the last two weeks, and that the call we got was that the problems baby Kevin were even worse than originally thought. He most likely would not live. I could tell he was struggling to find the words to explain how he felt. I felt so bad for him, because he has a special bond with my 2 year old twins and he looked forward to having the same bond with Kevin. I asked him to try and tell me how he was feeling. He told me he did not know how to explain it. I decided to leave him alone to think and went back to check on Erica.
Going back into the room I sat beside Erica and explained the conversation that I had just had with Anton. She said she wanted to take him to get his game and that she did not want him to go to sleep with the image of her on the stairs crying being the last he saw of her that day. I went into the bath room and started a hot bath for her and told her to go in there and relax as best she could and when she was finished we would take Anton to get his game.
We got home and I told Anton to go in first and go upstairs, and Erica and I took a few deep breaths and started into the house hoping to hold it together long enough to get upstairs so my mom and Anton did not see us break down completely. We went into the door and instantly my mom's face changed. It must have been obvious that something was wrong. We started up the stairs and Erica dropped, unable to take the news. I helped her up and led her to the bedroom as she cried out, "I can't do this" and "How are we going to make it.?"
I got her into the room and laid her down in bed and held her as she sobbed. It broke my heart to watch my wife lay there as her world crashed down around her. The hope we had just a few minutes ago was gone and had been replaced by the crushing reality that our baby was not going to make it. As Erica calmed down I knew I had to go talk to Anton. I was not sure how he would react as he is autistic and does not always have normal emotional reactions.
I went in his room and he was staring quietly at the wall. There was no game controller in his hand and the screen to his TV was black. I knew he was upset and sat down and asked him if he understood what just happened. He answered simply with that he heard the lady said genetic counselor and that he figured something was wrong with the baby. I explained everything that had happened the last two weeks, and that the call we got was that the problems baby Kevin were even worse than originally thought. He most likely would not live. I could tell he was struggling to find the words to explain how he felt. I felt so bad for him, because he has a special bond with my 2 year old twins and he looked forward to having the same bond with Kevin. I asked him to try and tell me how he was feeling. He told me he did not know how to explain it. I decided to leave him alone to think and went back to check on Erica.
Going back into the room I sat beside Erica and explained the conversation that I had just had with Anton. She said she wanted to take him to get his game and that she did not want him to go to sleep with the image of her on the stairs crying being the last he saw of her that day. I went into the bath room and started a hot bath for her and told her to go in there and relax as best she could and when she was finished we would take Anton to get his game.
We managed to get back in the van and drive to the store. While we are there Anton is looking at games and every time Erica talked he looked at her like he was expecting her to break down. He picked out his game. We then took him to pick out his new shoes. It was oddly calming to do something normal.
When Xander came home I had him go to the garage with me. I sat him down and explained everything to him. I explained the CDH diagnosis and then went over the genetic disorder. He reacted the opposite as I expected. I figured he would be purely emotional and upset. Yet the first thing he asked was "Why cant they fix him?" I explained the genetic disorder prevented him from getting the treatment he would need to survive the CDH. He took a deep breath and then started talking about a video game. I asked him if he understood the news I had just told him. He said he did and I figured he was going to need to process it in his own time.
I went to sleep that night wondering how I was going to guide my family through this storm. I knew that in the end we would make it through, but how much of the "us" that was there on December 17th would remain when we come out the other side of this.
When Xander came home I had him go to the garage with me. I sat him down and explained everything to him. I explained the CDH diagnosis and then went over the genetic disorder. He reacted the opposite as I expected. I figured he would be purely emotional and upset. Yet the first thing he asked was "Why cant they fix him?" I explained the genetic disorder prevented him from getting the treatment he would need to survive the CDH. He took a deep breath and then started talking about a video game. I asked him if he understood the news I had just told him. He said he did and I figured he was going to need to process it in his own time.
I went to sleep that night wondering how I was going to guide my family through this storm. I knew that in the end we would make it through, but how much of the "us" that was there on December 17th would remain when we come out the other side of this.
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