Saturday, January 9, 2016

A New Mindset (Kevin's Story, Part 8)

It had been just over a week since we had received the worst news of our lives.  I was 25 weeks pregnant and we had recently announced to our friends and family not only our baby's name, but also the fact that he wasn't expected to survive.  We had chosen the name Kevin Landry at the beginning of the pregnancy.  I had known that if we had a boy I would name him Kevin after my dad.  Now the name seemed to have more meaning than ever.

It was the day of the 3d/4d ultrasound that Scott had scheduled back in November as a birthday gift to me.   It had been meant to be a family event.  All 6 of us were going to go and we would let the boys learn if we were having a boy or girl.  I had been talking it up to them for 2 months and we were all excited.

With Kevin's diagnosis, everything changed.  Scott and I were just as excited as ever to see our baby but we were worried about taking the kids.  We knew that with the Pallister-Killian Syndrome diagnosis it was possible for him to have any of an array of physical deformities.  They were still trying to process the reality of what was happening to their baby brother and I felt that it was too soon to possibly expose them to anything like that.  Scott and I decided to go alone and find out what we were dealing with.  We could always show the boys the photos and dvd at a later date when we'd had time to explain anything we had seen.

Scott had called ahead to let them know our baby's issues so we wouldn't have to explain things when we got there.  If there were any outward physical defects we didn't want the person doing the ultrasound to be caught off guard.  

Getting to see Kevin that day was one of the most special moments of my life.  There was absolutely nothing that made him look like he was different from any other baby.  He looked perfect. If we hadn't already received his diagnosis we would never have believed that anything was wrong.  It was hard to watch this perfect, active little guy on the screen and believe that he wasn't going to make it.  It was surreal. The ultrasound tech was awesome and spent extra time with us.  She took her time to get the best shots and gave us photos that we will treasure for a lifetime.  She also threw in a stuffed elephant that plays a recording of his heartbeat.  I knew all of these things would be a comfort in the days to come.  I was and am so grateful for modern 4d technology that allowed us to see our baby in life.

It was like a switch inside me flipped that day.  My focus up until this day had been on how awful and unfair this was.  I had never for a second considered not carrying Kevin for as long as I could but the thought had been equal parts horrifying and scary.  How could I carry this baby only to turn around and give him up?  Seeing Kevin's face changed everything.  For some reason I was chosen to carry this wonderful, special, little boy inside me.  I didn't know why or for how long but I knew that no matter how short his little life was I would do my best to make sure that he was loved and remembered.   That I could give him.   

Scott and I went out to dinner afterward just like we had planned 2 months before when the appointment was first scheduled.  Seeing our little boy so beautiful and full of life had lifted our spirits.  For the first time in ages we were able to taste our food and even smile.  We knew that our little boy was worth all the difficult days that lie ahead. Every moment with him was precious.  We knew we could do this.  We could do this for Kevin.

Sunday, January 3, 2016

A Dad's Perspective (Kevin's Story Part 7)

This post is my perspective of what happened the day we found out about
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 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.

Our World Comes Crashing Down (Kevin's Story, Part 7)

Today I sit down to write Kevin's story with an even heavier heart than usual.  Part of me can't bear to type these words but an even bigger part of me knows that it must be done.  The world needs to know that Kevin lived and his story needs to be told.

It was New Year's Eve and my 11 year old son Xander was spending the day with friends.  My mother in law agreed to watch the little ones so we could get some one on one time with our oldest son Anton.  He wanted to go to GameStop and get a new game with some of his Christmas money.  We also wanted to take him to get some new shoes before school started back up.  With everything we had going on we knew that we hadn't been spending time with our kids like we should.  This was an opportunity to begin turning that around.

The three of us loaded into the car and headed toward GameStop.  We had been driving for just a few minutes when Scott's phone rang through the van's hands free system.  Scott answered and we heard the caller announce that she was the genetic counselor and that the baby's results were back.  Scott quickly disconnected the hands free but it was too late to keep Anton from hearing who it was.

Even with hands free turned off I could hear snippets of their conversation.  She asked if he was driving. When he replied yes she asked him to pull over.  My heart sank.  It was in the parking lot of a drive thru restaurant that we got the news.  I couldn't hear everything but I managed to catch the words chromosomal abnormality, Pallister-Killian Mosaic Syndrome, and incompatible with life.  I pieced together enough to know that if by some chance our baby did survive he would be intellectually impaired.  Chances were he would never speak or walk.  He may not be able to hear. He could suffer from seizures or have skeletal abnormalities.  The list went on.  Anton was in the seat behind Scott and I was trying my hardest not to let my emotions get the best of me.  He couldn't find out now.  Not like this!  I couldn't do it.  I cried right there in the car.  I think I cried harder than I ever had in my life.  

After what felt like hours Scott finally got off the phone.  I told him we needed to go home.  The 5 minute drive from that parking lot to our house was the longest drive of my entire life.  At some point during the drive Anton dropped his change.  I can still hear those coins falling onto the van floor. Apart from my crying it was the only sound.

We pulled up in front of the house and I somehow managed to get inside.  Scott's mom was sitting in the living room and I know she knew it was bad from the expressions on our faces.  I tried to run up the stairs but collapsed a few steps up.  I remember wailing, "I can't do this!" and Scott helping me upstairs and into bed.  I lay there for hours trying to absorb it all, trying to process the fact that we were never bringing this baby home.  I felt awful about what Anton had just witnessed.  No one should ever get news that way.  Especially not a 15 year old boy regarding his baby brother.  Scott went to go explain things to him.  I couldn't bear to do it.

Scott came back into the room to let me know he had talked to Anton.  While he was gone I had decided that I wasn't going to let Anton's day end like this.  I got into the bath and got myself ready.  We were taking Anton out to get his new game come hell or high water.  To this day I don't know where I drew the strength to get up and do that.  I just knew that I still had other children I had to take care of.  I don't think my mind was ready to completely process it yet.  I was still in shock.

Scott, Anton, and I got back into the car and set off once again.  Anton got his new game and his new shoes and then we returned home to live the hell that was now our lives.  Xander arrived home and Scott had to break the news to him that his baby brother would not live.  I don't know how he was able to do it but I am grateful he was able to talk to our boys when I couldn't.  I couldn't have made it through the following days and weeks without him.