I learned a lot from this week away.
So much more than I was expecting and plenty in the sad truth about EB variety.
Such as, Raquel will have mitten hands. Like a duck who also has no Collagen 7 in their feet, the Epidermis will eventually release from the Dermis and create the webbing. Of course I'm not letting that happen without a fight, but the reality of the outcome is likely something we'll not avoid. Among other issues I'll not write about for fear that Renata reads all this. It's enough right now that one of us holds some reality. Even if it's already past one year.
The highlights were meeting three young men with RDEB. All had lost function of their hands within the mitten skin and a life of the battle with RDEB was very evident, yet the first thing each of them said to me upon learning I had a 15 month old daughter was - don't treat her with pity or any special rules, just treat her like everyone else.
Really, that was basically the primary rule in our care for Raquel that they suggested.
I thought it strange that they each would say the same thing in a manner of speaking, even though I don't think they actually communicated much between each other. At least I didn't see them talking among themselves.
What also stood out from my time at the Congress was everyone had their own philosophy on EB care. As much as it's parallel in basic care the intricate philosophies can be quite divergent.
I'd bring up things we were doing or have done from the G-Tube, hand bandaging to our pain regime and I'd get quiet stares of contemplation and surprise or comments like I was half baked, misinformed or off my rocker. In some cases where the person stayed around long enough to listen to why or how we got to said end, some useful discussion took place. In some cases I was reassured in what we were doing and in other cases I realize we can slightly alter her care.
It was interesting as doctors in Austria differ from those in UK from those in USA from those in Chile. It's subtle in some of the variables that seem to separate them, but interesting to see and hear.
Although, I think lack of $ has more to do with how people in South America can deal with the disease. There were some horror stories I've heard from that part of the world.
Such as in Columbia they use rose thorns to pop blisters and in many of those places they have no choice but to wash the mepilex dressings over and over. That is if of course they have any access to expensive bandaging materials we almost take for granted.
thorns to pop blisters,
if life with EB wasn't complicated enough!
Never-mind what I heard about Romania!!!
I feel quite empowered about meeting so many interesting and compassionate people. Armed with emails and contacts, I'll be able to present an issue and then be able to pick and choose my way through the various responses based on philosophy, socioeconomic variables as well as basic pragmatic applications to see how we can apply it to Raquel.
I'm still encouraged by how healthy and happy Raquel is to be fairly sure our philosophy in general is solid at this point, although I'm quite sure my EGO will not get in the way of letting Raquel's care evolve.
Our new friends in NY whom I visited upon returning from Europe have shown me many aspects where I can adjust her wraps.
The people I met from Argentina have reopened the thought to include more padding on Raquel's outer layers (it's been tried before by a friend, but we need to figure it out asap) among things.
A Chilean Dentist and Dermatologist opened my eyes to many other aspects too deep to plug in here just now, but all these people and many more have really proven to create a dynamic shift in how I see and will respond to this disease.
The isolation I felt before is no longer. I have to admit some of that isolation was a self defense mechanism used to cope.
It helped that I was able to get to where I could ask hard questions and listen to the presentations.
I'm quite sure I wasn't ready to hear many of those facts only a few months or weeks before.
Another big step which I'm not all that comfortable to admit, was simply to be able to sit with those affected with EB so severely and not close off into a self absorbed sad state of fear for my babies future and just bullsh&% about life. I can't explain how F'n great that felt, when I suddenly realized that my self-centered FEAR was gone.
There is a certain lightness of being I feel after this trip. I look at Raquel in a slightly different way now. Strange to feel lighter despite now knowing and accepting much of the difficulties that lay ahead.
The weight was gone even as Renata and I each spent an hour each tending to the intermittent screaming baby from 3:30 to 5:30am my first night home.
Although lets be clear, all that I've learned and how it will affect our little family unit and Raquel's life doesn't change the fact that being awoken well before I'm good and rested by a screaming baby with no apparent reason isn't annoying or difficult, nor is the fact a dressing change often full of blood and pain doesn't SUCK!
Images from the travels
|The location of the final dinner in Groningen|
|Sir Francis Bacon|
|Fire Island NY|
|Casey, Becky and Nurse reluctantly leaving the beach.|
|Nannys on a break in NY|
|Lost Squirrel with no tail. Half the trees in Central Park were down from recent snow storm|