I began this blog as a way to honor the life of my son Kevin. He was diagnosed in the womb with the fatal diagnosis of congenital diaphragmatic hernia and Pallister-Killian Syndrome. I chose to write this both to honor him and in hopes that it may help even one person going through something similar. This is Kevin's story.
Sunday, February 28, 2016
The love we know.
Scott and I have been reading a lot about families who receive a fatal diagnosis for their babies. According to statistics between 80 and 95 percent of parents choose to terminate their pregnancies. This makes me so incredibly sad.
I have never once held back how I was feeling or how hard it is to live day to day knowing our baby is going to die. It is excruciatingly hard. It is raw and painful. Sometimes it feels like the weight of it is almost too much to bear. But for all those moments we also have the ones of complete love, joy, and happiness.
There have been many, many times that baby Kevin has brought us joy. I don't know how many times Scott and I have settled in for the night to binge watch our favorite tv shows, only to be distracted and amused to laughter over the crazy dance baby Kevin is performing for us.
When we see Kevin on ultrasound we are reminded how wonderful life is, however brief. We watch him kick and punch and yawn and make grumpy faces that remind us of his big brother. We see how content and beautiful he is and we have no regrets. We don't see his diagnosis, we only see our beautiful baby who we will love and protect with all of our being just the same as we would his brothers and sister. Our baby is so much more than the sadness and heartache we will endure. He is love and light, our little ray of sunshine. We may only get him for a short time and, while we will certainly grieve his loss for the rest of our lives, we will never doubt that he was worth every moment.
I don't judge anyone who has made a different choice than us. We know that our baby Kevin is happy and strong as long as I am carrying him. We don't have to worry that he is enduring discomfort or pain. I understand that the choice of whether or not to carry a fatally ill baby is never taken lightly. Not everyone faces the same situation. All I can say for sure is that carrying Kevin for as long as possible is the right decision for us. I can't imagine missing out on all these precious moments with him. I could not imagine cutting his beautiful little life short. It is all worth it.
"Imagine a love so strong
that saying hello and goodbye
in the same day
was worth the sorrow"