Jimmy's Eulogy

I recall an article that Crystal read to us shortly after bringing our sweet little girl home from the NICU a little less than a year ago.  The article is written by Emily Kingsley titled "Welcome to Holland".  To summarize, she compared having and caring a disabled child to planning a trip to Italy.  When you first find out that you are expecting a baby, the excitement of the pregnancy is like planning a trip to Italy.  You start to do research on places to see in Italy and buy resource materials such as tour guides and maps of Italy.  After many months of excitement and planning, it is time to board the plane to travel to Italy.  However, when you land, you hear the stewardess announce "Welcome to Holland!" 

You may think to yourself, "Wait, what is this, I am not prepared for this, I have been planning and expecting to be in Italy not Holland."  So now you have to find and buy resource materials on Holland.  At the same time, you may feel bitter when you hear your friends brag about how wonderful their trip was to Italy.  When the confusion finally  settles down and you have had a chance to gather your thoughts, you find that Holland isn't such a bad place.  Sure Holland maybe a slower pace than Italy, but you find out that Holland has tulips, windmills and even the Van Halen brothers, Eddie and Alex, are from Holland.  Actually I threw in Van Halen, on the article, the writer wrote Rembrandt Van Rijn.

At the end of the comparative article, the writer concluded that if you continue to stew over the fact that you never made it to Italy, you might miss out on the special and loving things that Holland has to offer.  So if I compared Everly's journey to this article is it similar up to a point.  We expected that Everly would have large VSD, which according to the doctor is totally repairable and once her heart is repaired, she could live a fairly normal life.  The moment that our plane landed in Holland was when the NICU doctor, Dr. Mendoza gave us the genetic test results.  I remember that day very well.  I left the NICU to get more supplies for our continued stay in the NICU.  As I was walking back to the NICU room, I saw Dr. Mendoza next to Crystal and Crystal was in tears.  At that moment I knew that the result was trisomy 18.  We had suspected, back in October of 2013, that Everly might be a trisomy 18 baby, but that diagnosis was dismissed in November.  However, the result from the genetic test changed how we would live our lives for the next 11 months.

This is where the similarities between the Everly's life and the article end, because if you followed Everly's life through Facebook or Caring Bridge, you will know that her life was not about settling for Holland, her life's journey was more like a tour through Europe.  Most of the time the path we took on our metaphoric European tour was heart warming and filled with joy, as if those days were God sent.  There was one rare occasion when Crystal left the house with the boys.  I sat Sissy down in our den to get her feed ready.  When I came back to the den, I noticed that she was smiling.  At first, I could not figure out why she was smiling until she did it again.  And then I heard them as well.  She was smiling because she heard some birds chirping outside of our window.  At that moment when I realized what was going on, I felt so much joy that it brought tears to my eyes.  Sometimes the path we took was confusing and we felt lost and maybe a bit of anger.  If I mentioned sleep study to my wife, she will know exactly what I am talking about.  And than there were times that the path was down right scary, like the first time we saw Everly's color changed in the middle of night.  She had just been home for about three weeks since being discharged from the NICU.  It maybe cliche, but I would give anything to re-live any of those days even the scary ones, if just to hold her again, to feel the warmth of her body, to hear her cry, to hear her sass or to see her smile.  I would even settle to hear her alerts from the oximeter.

So here we are on the day of Everly's celebration of life, she has already continued on her journey without us.  We may have carried her for most of her journey, it was her who has always lead the way.  I am not saying this because I am a proud father who likes to brag.  I am saying this because, heck yeah she is an amazing little girl.  I have scrolled through FB or Caring Bridge to read comments from friends, family and people we never met as to how Everly's journey has impacted their lives.  It is a testament as to how special and amazing our little girl is, but it is also testament to the hard work my wife put into the social media to ensure that world knows Everly.  We never made it to Italy on our metaphoric tour, but who cares.  We got a chance to experience something much more meaningful, much more important and of far greater value, we experienced a life time of memories with our little Everly.

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