Wednesday, June 18, 2008

A Message For Sean...

Yesterday I received a comment from someone who came across my blog looking for answers. His name is Sean and I was deeply moved by the things that he shared. I read his comment just minutes before heading out on my 2 hour drive to Spokane for Elisabeth's appointment with the neurologist.

For those 2 hours I could think of nothing but this man, his sweet wife, their 2 sons, and their daughter on the way. I don't know if Sean will make it back to my blog again...but in case he does, this is for him.

Let me start by expressing my sincerest condolences on the loss of your little boy. My heart aches for you and your family. I cannot imagine any greater pain than that of losing a child. It is a feeling that I have not felt in its entirety, but I have felt the anguish of being told that my child would die. That pain alone is enormous, but I am sure no where near what you have felt during the past 7 months.

I am also deeply sorry for the results of the recent ultrasound. It brings back very vivid memories and feelings. It was just one year ago that I was in your wife's shoes. Trying to deal with the emotions that come with learning that your unborn child has birth defects. There are so many questions "why?" "what?" "how?" "when?". I remember being so overwhelmed with the feeling of loss...but I still needed to face the reality of the situation. There was no time for mourning.

I gave a great deal of thought yesterday to how I have dealt with my experiences. The ups, the downs, the questions, even the answers. Here were some of my thoughts:

My immediate reaction to dealing with my circumstance was to get informed. I scoured the Internet for answers (like you are). I wanted to understand everything there was to know about hydrocephalus. I wanted to know the best treatments. I wanted to know the best doctors. I wanted to know that no matter what the outcome for my child I had done everything in my power to provide the best medical care available. Research brought a sense of peace as I came to understand my baby and the way that she was developing. Since her birth she has been diagnosed with a number of other birth defects - including the craniosynostosis. I have faced each of these the understanding the facts and learning what I could do to make her life the best it could be.

There was one other aspect of my life that I realized I had control over. And that was control over my attitude. I knew that negative feelings could do nothing to better my baby. I tried keep a positive outlook despite the grim circumstance. At that point I didn't expect her to live, but I decided to be grateful for the time I had with her in the womb. I tried to focus on her just being my baby and to enjoy each and every kick. Since she has been born I have made every effort to fill her little world with peace, comfort, music, love, and a sense of safety. At this point her entire world revolves around our family and we as a family are trying to provide the very best for her. She is a little piece of heaven in our home.

Sean, I know that none of this can take away from the anguish that you and your wife are feeling. But I hope that it helps in some very small way to know that there are others who wish you well. I am so glad that you found my blog. I have chronicled my dealings with Elisabeth with the hope that my experiences might provide answers and maybe even comfort to someone else. Please continue to visit. And please feel free to email me ( with any other questions (as well as updates....I want to hear how you daughter is doing!)

Tomorrow I will go into detail about Elisabeth's appointment yesterday. The news that I received has been hard for me to cope with. I think I need another day to digest what I learned. Till tomorrow....

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