EB Awarenss Week: The sad part of my "job"

This post may be controversial to some people and it will revel my true feelings about certain things and that may cause some people to change they way they think about me.  I don't normally take that kind of risk or expose myself in this way, but I think sometimes people (even myself) realize I am human too and have my own thoughts an feelings on things even if I don't express them often.

While I TRULY enjoy my job, my responsibility, to help other EB Families, there are many days when that "job" is frustrating, sad and heartbreaking.

I wish I could save every EB baby that I come to know; I wish the term 'EB Angel' was a thing of the past.  I know I can't save everyone; but I often feel like I failed when one dies.  Don't worry, I know I truly didn't fail that family; that child.  But that is one of the frustrating parts; did I give the family enough info to make the best decisions they can?  The other frustrating part, NOT giving my opinion on certain aspects of EB care.  I use to be a 'my way is the only way' person but I have changed a lot in the past 10-15 yrs.  When I am speaking to an new EB Family I WANT to TELL then what to do.  But I have to keep reminding myself that I am just the provider of information; NOT the decision maker and its up to the parent to make the decisions on issues such as g-tubes, trachs, medications, etc...  and some days that is very frustrating for me.  But I haven't alienated too many people so I must be doing a good job of keeping my opinion out of it! 

Visual diagnoses by doctors is something else that also frustrates me.  To hear that a baby is born with super long fingernail and just a few blisters/patches of missing skin here and there and the doctors are quick to say, 'oh they are so mild, its simplex.'  So the parents go home relieved and happy only to have their hearts broken weeks later when the biopsy comes back as junctional-hertliz.

Or for the family who's child is more with massive skin loss and the doctors assume the child has junctional only to be completely shocked when the biopsy comes back as simplex.  

In my observation those who start out mild tend to have a severe/progressive form of EB and those that start out severe tend to have a milder form of EB that improves with age.  Granted it doesn't happen that way all of the time, but it seems to happen that way most of the time. 

And that is also something else I struggle with; not giving families my opinion on what type of EB I think their child has (unless they ask of course!) 

The sad and heartbreaking parts:

Of course learning of a new EB Angel is always heartbreaking, but for me knowing what the parents are thinking, feeling, and how they are suffering.   That is more heartbreaking for me.  I know what its like to lose a child; I know that the day after feels like; planning and attending the funeral of your OWN child; knowing what the first holiday, birthday and angel day will feel like without them.  I want to tell them it will get better; but that would be a lie.  It doesn't get better; it just gets easier to live with.  And I have over 100 friends/acquaintances that know exactly that; and the list continues to grow every year:/

I am so glad those 100+ people are in my life, but I wish it was because of a different reason.  And I know they feel the same way:)
 

Even though some days are sad, I will continue in my quest: to use my knowledge and experience of EB to make the journey of a new EB family a little easier to travel.