I have very sad news to report. Reese Kostjuk died yesterday on the day of her first birthday. Like Dylan, Reese was born with Emanuel Syndrome. Unlike Dylan, she had much more severe medical issues. Those medical issues have kept her in the hospital for most of her short life.
The world wide Emanuel Syndrome community is tiny. Those who talk about Emanuel Syndrome in a public way like a blog are few and far in between. The Kostjuk family was one of those who blogged about what it was like living with an Emanuel Syndrome child. I had been following their story on http://kostjuk5.blogspot.com/ for a few months now.
I had been hoping that Reese's medical issues might improve in the next year and we might possibly see Reese in Niagara Falls in 2009. Sadly, that will never happen now.
I have never spoken to them. The only communication I have had with them is an occasional comment I left on their blog. We have next to nothing in common. As you can see from our 2 blogs we have very different views on religion. Despite this fact, we had something in common that very few people on this planet have. Our children with Emanuel Syndrome.
This commonality in some way connected me to this distant family. I regularly followed their blog to see how Reese was doing. I was happy for them when she was able to leave the hospital for a while. I was worried for them when her condition worsened. It broke my heart to hear of her death. It brought tears to my eyes. I am truly sad for their loss. They are experiencing the worst thing that can happen to anyone in this life. The death of a child. A parent is never supposed to bury their child. It is our child's job to someday bury us, not vice versa.
The world wide Emanuel Syndrome community is tiny. Those who talk about Emanuel Syndrome in a public way like a blog are few and far in between. The Kostjuk family was one of those who blogged about what it was like living with an Emanuel Syndrome child. I had been following their story on http://kostjuk5.blogspot.com/ for a few months now.
I had been hoping that Reese's medical issues might improve in the next year and we might possibly see Reese in Niagara Falls in 2009. Sadly, that will never happen now.
I have never spoken to them. The only communication I have had with them is an occasional comment I left on their blog. We have next to nothing in common. As you can see from our 2 blogs we have very different views on religion. Despite this fact, we had something in common that very few people on this planet have. Our children with Emanuel Syndrome.
This commonality in some way connected me to this distant family. I regularly followed their blog to see how Reese was doing. I was happy for them when she was able to leave the hospital for a while. I was worried for them when her condition worsened. It broke my heart to hear of her death. It brought tears to my eyes. I am truly sad for their loss. They are experiencing the worst thing that can happen to anyone in this life. The death of a child. A parent is never supposed to bury their child. It is our child's job to someday bury us, not vice versa.
An event like this of course makes me think about the possiblity of the death of my own child. The thought terrifies me. I am not sure that I could survive if something like that happened to me.
The one fact that does console me is the families faith. It does seem to provide them with comfort and will help them get through this horrendous event.
The Emanuel Syndrome family has lost another member. This sucks...
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4 comments:
Sleep well, Miss Reese.
Thank you for posting about our sweet baby girl. Our Reese never said a word or was able to come home with us ~ but her life was used and she was loved. I expressed to Todd when she was first born that the only thing I cared about is that she knows that she is loved. With her condition the doctors gave us little hope. This was something so and they haven't seen this syndrome before. That's where the internet brought us hope. Makily was the first little girl that popped up when we searched ES. She was happy and smiling. That gave me a picture of what could be. Although Reese never came home, we did experience her smile and the warmth of her touch and sweet spirit. Our children and ourselves have a new love for these children. We have met amazing families and children with disabilities. Reese brought us into a new world. She opened our eyes and gave us a compassionate heart for these children. When Reese had a good day she would smile and this was my greatest joy. I loved seeing her legs kick in the air out of excitement as we would walk in her room or as I hold her in my arms. I wouldn't trade these days for anything. She was our gift from the Lord ~ a gift for a year.
I have done nothing but think about them since she passed. My heart is aching.
What a precious family! They have encouraged me in my faith and as a parent. Miss Reese has blessed me in ways that I can't describe. What a gift that little girl is to theis world!
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