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Wednesday, May 11, 2011

An Angel gets their wings...

March 17, 2000 ~ May 8, 2011

Another angel got their wings:(  I had known for a while that Amber's health was failing and I had prayed and hoped each day that she would recover but as the end seemed to get closer, a had a feeling that for some reason, May 8th, Mother's Day, would be the day.  I hoped I would be wrong; apparently God thought May 8th would be a good day after all to bring her home.  Below is a story of how I met Amber. 

I first "met" Amber through her mom, Sandy around 7 or 8 years ago on an on-line EB message board.   At some point in our correspondences she mentioned that they lived in Michigan.  I grew up in Michigan at had just moved away about a year or so before I met Sandy so I asked what part of Michigan they were from, expecting her to say, somewhere on the East side of the state, as most of the EB families in Michigan lived on that side of the state.  I was completely SHOCKED when she replied that they lived in Holland!  I lived there from the age of 9 till I was 23!  Then when I found out where in Holland they lived, I was even more shocked; their house was less than 2 miles from the house I grew up in!  During the summer of 2003, my family and I came back to Holland to visit family and friends.  We arranged to meet Sandy and her family.  I remember stopping by their house and meeting Amber who was about 3 at the time and I was shocked on how good she looked!  I remember telling Sandy that if I didn't already know Amber had EB, I never would have guessed it, let alone that she had RDEB.  

We kept in touch over the years and seeing them once in a while when we came back to Holland.  I'll never forgot the email I receive from Sandy after her grandson was born telling me that the doctors suspected he had EB too.  What are the odds that a person would adopt four children, one with EB and one of the ones without EB would go on to have an EB child of her own.  I think we figured like a billion to one or something.  Sadly, Le'Trell was only with us for a short time and became an EB Angel on December 14, 2009, which hit very close to home for me; as December 18, 2004 was the day our only son, (at the time) became an EB Angel as well.  Our families now shared a grief that I would never wish upon anyone. Looking back, I now wonder if Le'Trell was God's way of preparing the family for what was to come?

My final time with Amber was last summer there was an EB Conference in Ohio and we worked it out and planned our annual trip to Michigan over the same time so I could attend the conference.  Sandy decided to attend as well and was nice enough to let me share a room with them and give me a ride back to Michigan.  So I had the honor of being around Amber, her nurse Pam and of course Buddy for a few days.

Now here I sit, over a thousand miles a while, wishing I was closer to help Sandy and her family get through the difficult transition a little easier.  I have been where they are now and know what the next few weeks, months and years will be like for them.  Sandy and Al not only belong to the secret club of parents who have lost a child, but also to the one for parents who have lost a child to EB  No one every wants to be a member of either club; but once you are, you feel an immediate connection to other members because no one can truly know what it like to have lost a child unless they have been through it themselves. They have been through so much over the past couple of years, but I know they have the strength and faith to continue on.

1 comment:

  1. My sincere condolences to your friend's family and to you also.