Even all the good can't take away all the pain.......

Today I was speaking to another EB mom on the phone who lives near me and who sadly lost her baby to EB about 14 months ago.  We were talking about the hospital our kids were born.  I personally don't like that hospital and blame the doctors there for Garrett's death.  But that is another story for another day.  Anyways, she was telling me how much the place has changed and how they are set up much better to care for the next EB baby to be born there.  Since Garrett, there has been 4 other EB babies born, all boys, born at the very same hospital.  Only 2 are currently living.  But because of the things this place learn with Garrett and the mistakes that were made, they have come to realize how better to care for an EB baby and what things should be done and which things should not be done.  Which is a good thing, but I still will never trust that hospital to care for any of my kids EB or not. 

Even though I am glad these good things seem to be happening there, it still doesn't erase the fact that it cost Garrett his LIFE  for those thing to occur.  And that makes me so sad to think about that sometime.  Not matter how much good came from the situation....it can never take away all the pain of losing a child....

The good that comes from EB

I know those aren't two words you hear in the same sentence; good and EB.  But there is some good that comes from EB.  The biggest one; the friendships that form between people who are affected some way by EB.  Because 99% of the time, EB is the ONLY reason those relationships form in the first place.

I am on Facebook and I have about 535 Facebook friends. They are divided into 5 categories: family, current and former co-workers; friends from high school; friends from college; and those affected by EB somehow.  I went through the list the other day and about 1/2 of those 535 I only know because of EB!

I know EB sucks and its not fair for someone to be born with EB.  But EB is here stay (but hopefully for not much longer) so we must make the best of it somehow.  And the part that makes it a little bit better- are the people we meet a long the way.

I have so many wonderful in the past 7+ years.  Some have a child with EB; others lost a child with EB; and many have EB themselves. 

I also think those with EB have much more compassion for others; especially those with medical issues themselves.  There is a girl in my daughter's class that has some medical conditions; not sure what kind, i just know she can't be out in the heat either- so she and Sami go to an alternate activity when their class has PE.  Sami is so concerned about this girls health and makes sure she isn't too warm and such.    I suppose anyone can be compassionate, but I think those with EB (or any major medical issue) are more so.

So if you have trouble seeing the good in EB at time, think of these reasons I have listed here and maybe it will help make things a little easier.