Friday, February 11, 2011

After a week to normalize, we're back to normal.

That was a tough week thinking about stuff.  The kind of stuff I'd done a good job talking about, but likely better explained by an out of body experience while my mouth was moving.  Maybe I didn't see how difficult it really was and can be till last Tuesday's ER visit.  Things got stressful here and there, but really, we've had it pretty good.  I'm not saying I haven't gone through the frequent lament here and there, but that was not a day turn around for me at all.
The first day I held Raquel during her first real dressing change and the skin was dripping from her hand add the mind numbing reality of the situation, somehow I was able to go away have a good  bike ride, come back the next day and say I'm ready to take over and head the bandage procedure.
Watching your daughter stop breathing for reasons not exactly clear in a moment of chaos is something else entirely.
I wasn't naive to the idea that such and event wasn't inevitable or that she may eventually require a trach or how ever you spell it.  Kind of like, who wants to know how to spell Epidermolysis Bullosa?
Anyway, a couple good emails from friends and new ones with a common path helped a great deal.
Although like anything time and distance heals all.  Just make sure that learning has taken place in that time.  It has, but like everything, there is going to be so many situations ahead that we just can't plan for.
What I can say is, this week has been GREAT.
Raquel is right in the middle of a very good stretch.  She had Queen Bee here Tuesday for the entire day. Renata was able to get some great respite and our house was cleaned, spotless.  I don't really help my case when I walk in the door with a cloud of concrete dust following me to the mud room.  Why don't I enter that door instead of tromp through the corner of the living room?  I'm quite sure if I keep that up she'll consider us a lost cause and maybe stop that wonderful help...  Simona has indicated our laundry room was next and that she might call for help to move things around. ???
Yeah that room drives me insane, but I can't imagine what she has in mind.  I'm finding my intrigue to what she will do slightly masochistic in that I'm almost 95% sure I'll be put out in some way doing by best to bite my tongue, 'for the greater good I suppose'.

Back to Raquel, best parts these days are her new sounds and upright sitting and in some cases her new ability to hold objects.

She's such a bright light when she's checking stuff out and doing her ahh sounds as if to say hello to whomever walks in the door.  I'm ashamed to say it, but I missed this with Cordelia.  I couldn't wait for her to be BIG.  Funny, I was the same with myself, I couldn't wait to be BIG I couldn't wait to take on the world myself.  I couldn't wait to see an independence in Cordelia.  I don't have this issue with Raquel.  I'm the polar opposite.  I don't want her to have teeth.  I don't want her to crawl. I don't want her to get older.  I don't want a lot of things with her.  Blisters being the BIGgest of my I don't wants.
Those selfish dark thoughts again...
BREATH Ryan!!!

I remember going to my buddies family restaurant (miss you Mike) we were very young and barely had a clue about life.  He came up to our table to mutter under his breath 'check out the table by the window, but DO NOT stare or talk too loud when we look'.  He probably should have started with 'Do not look now, but'.  Turned out it didn't matter.  I was so stunned by what I saw that I couldn't say much, although I messed up on part one, I couldn't stop staring.  I was astonished by the man at the window without any arms.  He had probably been there before we even entered and our peripheral vision noticed nothing out of the ordinary.  He was seated comfortably with a full meal of hearty Greek foot (food hahaha) and a glass of wine.  His shoes placed neatly under his chair and his feet as arms holding the wine glass or holding knife and fork eating, carrying on a conversation with laughter and not even a flicker he was doing something different than anyone in the place.  I was young, I did a little learning that day too.  It's obvious to me there is no limit to the things people can adapt.  We just do, as parents and as siblings. 
Pictures of the week.

I'm seeing a theme here, shots from my studio door across to Vancouver over the water.


  1. Ryan, your writing touches our hearts!
    How fortunate Raquel is to have you and Renata as parents. Really admire your spirit and willingness to take such a leading role in her care. It says a lot about your inner strength, your sense of commitment and love for your family. Seems like it shines through your trial and frustrations with EB disease.
    You have two beautiful little girls. How blessed you are.

  2. Nice to read your update and glad it was a good week..EB sure will have its ups and downs. We are fortunate that we have always had more UPS than DOWNS.. :) Always look at her and see a beautiful little girl..who just happens to have EB..Look past it all to her eyes and see who she really is...Eb will challenge you and it will seems at times you are losing control..and other times you will marvel at her accomplishments and see her personality shine past all the troubles..I look forward to reading her updates....