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.
Those selfish dark thoughts again...
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.|