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Showing posts with label Epidermolysis Bullosa; EB Awareness Week 2012. Show all posts
Showing posts with label Epidermolysis Bullosa; EB Awareness Week 2012. Show all posts
October 31, 2013
EB Awareness Week 2013: Remembering the EB Angels
October 30, 2012
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.
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.
EB Awarenss Week: The happy part of my "job"
I know there are people who consider me an EB advocate and I never really thought of myself as one until recently. I don't go out in public to raise money or awareness for EB; I am more of a behind the scenes kinda person:) I have my blogs; I run/co-run EB support groups on-line; I reach out to other EB families, especially those with new babies. And I guess all that makes me an EB advocate in my own little way:)
It wasn't until I got to college and was learned how to use the internet that I found and "met" others with EB. Then when I was twenty-one, I finally met someone else with EB in real life! Since then I have meet dozens of others with EB in person and hundred of others on-line. Because of EB, 520 of my 782 Facebook friends either have EB or have a family member or friend with EB!
Because of EB (and the internet) I have made some wonderful life long friends! And most I have never met in real life!
It was until after Garrett that I really became involved in the EB community. It was after having Sami and then Garrett, I realized how little information there is out there about the day to day care of an EB baby. The things like clothes, diapers, bottles, etc.. And if I (some who HAD EB) was having this much trouble, how were parents who didn't know about EB handling things?? My goal seemed simple at the time: to make the journey of another EB family a little easier to go thru my using my experience and knowledge; to give them the info and tools sooner rather than later in the process (SO many families often find out way later on about the small things- reflux, certain bandages, ointments, etc..and had they known about those things from the beginning it would have made things easier)
While my mission hadn't changed, it had gotten harder! So many new families each year; so many types of EB, and each case is different- no one size fits all when it comes to EB! Even though I am sure I do more than anyone expects, there are days I feel like I fail. It's hard to balance my own responsibilities (home, kids, work, etc...) with my strong desire to help other EB families. I wish I could do it full time (i'd even do it for free!) but like everyone else, I have my own kids and a job and a husband and a house and cats to care for and there are only so many hours in the day! People joke I should have my own "office hours" and while I did think about it for a short time, I realized EB doesn't have "office hours"! Families often have questions on night and weekends and I do not mind getting an email or text in the evening or on the weekend. 99% of the time if someone had a question or needs advice. After all, they need (are hoping for) an answer sooner rather than later.
My goal remains the same each day: to help, listen, advice, and suggest when I can and hope I make a small difference in the lives of others....
Stay tuned for part two....it will be posted later today:)
It wasn't until I got to college and was learned how to use the internet that I found and "met" others with EB. Then when I was twenty-one, I finally met someone else with EB in real life! Since then I have meet dozens of others with EB in person and hundred of others on-line. Because of EB, 520 of my 782 Facebook friends either have EB or have a family member or friend with EB!
Because of EB (and the internet) I have made some wonderful life long friends! And most I have never met in real life!
It was until after Garrett that I really became involved in the EB community. It was after having Sami and then Garrett, I realized how little information there is out there about the day to day care of an EB baby. The things like clothes, diapers, bottles, etc.. And if I (some who HAD EB) was having this much trouble, how were parents who didn't know about EB handling things?? My goal seemed simple at the time: to make the journey of another EB family a little easier to go thru my using my experience and knowledge; to give them the info and tools sooner rather than later in the process (SO many families often find out way later on about the small things- reflux, certain bandages, ointments, etc..and had they known about those things from the beginning it would have made things easier)
While my mission hadn't changed, it had gotten harder! So many new families each year; so many types of EB, and each case is different- no one size fits all when it comes to EB! Even though I am sure I do more than anyone expects, there are days I feel like I fail. It's hard to balance my own responsibilities (home, kids, work, etc...) with my strong desire to help other EB families. I wish I could do it full time (i'd even do it for free!) but like everyone else, I have my own kids and a job and a husband and a house and cats to care for and there are only so many hours in the day! People joke I should have my own "office hours" and while I did think about it for a short time, I realized EB doesn't have "office hours"! Families often have questions on night and weekends and I do not mind getting an email or text in the evening or on the weekend. 99% of the time if someone had a question or needs advice. After all, they need (are hoping for) an answer sooner rather than later.
My goal remains the same each day: to help, listen, advice, and suggest when I can and hope I make a small difference in the lives of others....
Stay tuned for part two....it will be posted later today:)
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