Monday, April 4, 2011

Eyes open and fine.

Turns out when we arrived at the Dr. office, Raquel first opened her eyes.
I have panics about the potential of eye injury with her.  I have this fear her eyes will puss up and the outer layer will fall off like the interior of her mouth did, way back when.  I'm not sure this is even possible, but I didn't think the way her mouth fell apart was possible either so what other nightmares are out there for us.
If she's going to be limited in so many ways of experiencing the world I'm very anxious she not lose one of the primary senses.  I fear with how I like to see the world and interpret it when so inclined, her potential loss of sight would be really tough on me.
Of course life changes with every little hurdle.  At first we were worried about her hands being wrapped so much, but now we both wish we could just get rid of her finger nails.  They cause more issues then they are worth.  Eyes?  Hopefully never.
So the panic level was high when Renata mentioned she'd scratched her eye.  We phoned our Pediatrician and Dermatologist then phoned another parent caseymommy for advice if such an occurrence had taken place with her son.  Renata reached her husband and his first words were, "It's not a national emergency", as well gave some more useful advice, if this quote wasn't the most. 
It was actually in the parking lot of Childrens that she first opened her eye, she looked as though it was painful, but she was willing to keep them open.  She grew more comfortable by the moment.  We waited for an hour to see our newly appointed Ophthalmologist, we had to tell him that during our visit.  Raquel was gold the whole time, by looking and getting the attention of all the kids around us.  She was great at her Tiger growl which received a few giggles at those she attempted to scare and waving her arm and turning her head at those who didn't.  Clearly her eye issue was a thing of the past.
The rest of the afternoon was a party by Raquel's standards.

We had no nurse today with a troubling trend when our few regulars get sick or can't make it.  We are forced to call in on our friends for H E L P.  Simona came over on an unscheduled visit, she was great although I still managed to get her irritated with me due to a few of my personality quirks. 
I don't always say goodbye when I leave the house or when someone else leaves my house, usually a family member.  So when it's not a blood relative it's actually a great compliment.  Well, not to Simona as she stood at the door exasperated staring me down.  Then when it hit me (after a nudge by Renata) she's waiting for a goodbye, I of course obliged.  In my defense I was looking down and feeding Raquel at the time, engrossed by her beautiful little face looking up at me and of course all the world around me ceased to exist.

Dinners from Cap Church have started again, so really, everything fell back in place quite nicely for the rest of the evening.
Grumpy turned 68, so we had a glass of scotch and a slice or two of Pavlova.

I have been looking at Tripp's videos Courtney has made.  Wow. 
She talks about the breakdown she's allowed once a month.  I agree.  She can have one.  But our tasks as providers of well being can afford only one a month despite how we feel as parents of special needs children.
In my weekend off with Karl fishing, that was my big thought.  Other then what went wrong by only being able to catch three fish.  Karl had none, so at least I'm on the right track with one of my endeavours.  The thought was the best thing I can provide for Raquel, other then being her advocate in all concerns medical and getting better at tasks I have with bandaging, is to be sure she's happy.  This disease certainly beats on the soul it has in it's grasp and those so close by, but if all the other times are good and based in happiness then her quality of life should not be a problem.  It's very clear to me that young souls need that deep nourishment of love, when that's clear a child missed it things so often trend to dark places.
A few minutes ago Raquel woke up in a fit.  She bashed her nose and went off for 10 minutes or so.
Renata was up with her, I had to also wobble into the living room to help give her medication.  I went back to bed shortly thereafter while the two cuddled sleeping on the couch, but I was overtaken by a cold sweat.  In minutes my hair was soaked.  Now at 2:30am I'm writing and adding to a post from earlier in the evening.
So many thoughts. 
So many issues. 
So little time. 
Have your break down.
Just don't let it last. 
It helps no one especially the ones who need you most.


  1. Glad her eye is better! we were thinking of her all evening. EB does drain on you..physically and emotionally. We see and do things with our child no parent should have to. Scream, get mad, get sad..It's ok to go throug the emotions. Just don't stay in any one for too long..Keep moving forward. I really admire your parenting styles. After speaking with renata, I saw myself in the earlier days. She is a great mom..rigt on track with her thoughts and concerns. Hugs to you alll....

  2. Clearly you guys speak our language too.
    We're fortunate to have your open experience as a guide. Literally you guys were the first to answer our questions, calm us down a little and give the perspective we need. Hopefully one day we'll meet in person.

  3. Hi Ryan,
    I just spent almost two hours reading through your blog ... and what can I say? I am speechless and in awe of how you're coping with everything. Fighting through the tough times and cherishing the love and good moments. At first I thought I'd understand a little more being a mum now too (Emma is just three months younger than Raquel), but then I realized I can't even start to comprehend the challenges you all must be facing every day, every minute. So I'm sending you a warm ray of sunshine from Mainz to let you know our thoughts are with you and your girls.