Life following Kevin's diagnosis has been difficult. We've had to face things no parent ever wants to think about. Shortly afterwards we had a follow up appointment with a neonatologist to discuss how we wanted Kevin's birth to go. We chose that Kevin's delivery should take place at the larger hospital were I am currently being seen instead of our local one. I feel comfortable with the doctors there and know they have much more experience dealing with situations similar to ours. We both agreed to only palliative care. Should Kevin be born alive our only concern is keeping him comfortable. We don't want to artificially prolong his life or his discomfort in any way. While I would love to have more time with him I know that it wouldn't be right to force it. We want him to go naturally as he is meant to.
Since we had no idea how long I would be able to carry Kevin we began thinking about funeral arrangements. As hard as it was to think about at the time I knew it would only be worse later on. We discussed it and decided he would be buried near my home town in the same cemetary as my grandparents. Thankfully my parents were able to take care of obtaining a plot so we could worry about what needed to be done on our end. Since we are a military family and hundreds of miles from home we decided to meet with a local funeral home to find out what we would need to do to get Kevin back home. As I type this everything sounds so cold and nonchalant but these were some of the most painful decisions of our lives.
The day we pulled up to the funeral home was one of the worst days of my life. I could barely bring myself to get out of the car. My feet felt like lead. I am not sure how long it took me to finally get out of the car. I remember standing at the door as Scott rang the bell and feeling the urge to run. I wanted to run and never stop. At the same time I knew this wasn't something I could run from. My only choice was to face it head on.
I walked into the funeral home that day around 26 weeks pregnant. I could feel my little boy kicking and wiggling inside me and yet there I was, preparing to discuss his death and burial. I was focusing on one breath at a time and hoping against hope that I would not be sick. The whole thing felt unreal and I couldn't get out of there fast enough. I felt like I was trapped in a nightmare.
The days since have been a challenge. I only see the doctor once a month now. There is no need for much monitoring since we know Kevin can't survive. Every night I go to bed and wonder if Kevin's little heart will still be beating when I wake up in the morning. I don't sleep much anymore and it makes the days long and hard to bear.
My mother in law has gone back home. We asked her here when there was still hope that medical intervention could save Kevin's life. Now that we know we won't need someone to help with the twins while Kevin recovers in NICU there is no need to disrupt another life. I know she would have stayed as long as we wanted but it wouldn't be fair to keep her here to be mired in sadness along with the rest of us.
We have tried to keep life as normal as possible for the kids. Some days we do okay at normal and other days not so much. Some days we can laugh and play with the kids and other days we can only feel sadness and anger at our situation. Most days I can hold the feelings at bay but then night comes again. As my thoughts have time to wander from the days tasks reality always comes crashing back.
Day by day my baby grows larger inside me and, today, at 31 weeks, I wish I could be putting the finishing touches on his room just like I did for his sister and brothers. I wish I was choosing his coming home outfit instead of burial clothes. It can be very difficult not to dwell on the unfairness of life.
At the same time I know that I have been blessed to have been chosen to carry this baby boy inside me. I am doing all that I can to help my children understand that they have a little brother who, even thought he won't live, is an important part of our lives. I want them to know that he is just as special and just as loved as they are. I want them to understand that it's okay to be happy that he lives and sad that he won't be with us for long. It's a hard road to travel but we are trying to maneuver it the best we can.
Pallister-Killian Syndrom is very rare. To date there have been less than 300 diagnosed cases worldwide. Of the pregnancies that weren't terminated (which seems to be about half) the average time of delivery is 30 weeks. We are now at 31 weeks. Each day that we get from here on out is a blessing. All we can do now is wait. We wait to say hello and we wait to say goodbye.
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