Thoughts on Death

I know this is a serious title. A serious topic. So those who don't want to think about these things should not read on.

We received news today that another child with 1P36 has died. This is the fifth child that has died this past year. And our group is not that large- couple of hundred people I think. When Zoe was diagnosed, we were told that the syndrome should not affect her life span. And yet this is the fifth sudden death and it gets us thinking.

I can not imagine what Emma's family is going through right now. We met Emma and her mother, Kate at the last conference. Kate has been very involved with starting up a non-profit 1P36 fund raising group as well as completing the mission statements. When I met Emma and Kate this past summer I could tell that Kate was so proud of her daughter. Like Zoe, Emma was very easy going and loved to smile. As I said, I can not even begin to imagine the pain of losing your child. I know what it is like to live with the fear of losing a child, but not what it is to lose them.

Zoe has her echo, EKG, and halter monitor tests tomorrow. In my gut I think her heart is doing ok. We are feeling a bit anxious about it since her pediatrician has been concerned about her turning purple when sick. Perhaps this is just a normal thing for 1p36 kids. There have been many posts lately about kids with LVNC who are not doing well. And posts about kids who are doing ok. We take all of this info in and try not to get worked up until we get the test results. Easier said than done!

With death on my mind, I pack my suitcase for a trip I do not want to go on. I need to go to Michigan for the next few days for a work conference. This means that I will not be able to be there for all of Zoe's tests tomorrow. And if the doctor is not able to see Zoe until Friday, I may not even be there to hear any results.

For people who know us, you will know that we are not religious people. I don't have faith in a fair and just God. But this does not make me bitter. Zoe is a joy in my life. And to me she is perfect. Her chromosomes are arranged differently than you or I, but that does not make her any less perfect to me. At times like this I do appreciate people keeping us in their thoughts and posting supportive comments. And for those of you that pray- go ahead and pray for us because I don't think it does any harm.

And keep Emma's family in your thoughts tonight.

I was supporting a patient at work today that needed to have a tube change. She is a very articulate 12 year old who does amazing for all that she has been through but still gets very scared with procedures. As I saw her dad holding her hand, brushing her tears aside, and talking gently to her I was struck with the thought, "No parent should ever have to go through this with their child."

And now I am struck with the thought that no parent should ever have to lose their child.

With Emma on my mind, I get ready for bed.