Parker had a good day today, and we are trying to catch up to him.
He no longer has a temperature and he still has no tubes attached to him. This means that his continued dose of antibiotics has to be administered intra-muscular and blood draws usually come from his heal. We also give him a couple of other medicines orally each day.
PJ is completely off of valium and morphine is down to just a few drops a day.
The physical therapist worked with him today and was very happy with his progress. His neck is getting stronger each day.
Renee had a visit from the ENT psychologist today-- I am not sure that this is common in the US but it seems every service has a psychologist assigned to it.
We also met with the Neuro-surgeon tonight in the new bad news room. The MRI showed that the liquid includes some blood in it and they are concerned that it may be layering a bit. The goal would be to put an internal shunt in which would allow any further liquid to drain off until the brain pushes back to the cranium. If the liquid is too thick they may put an external shunt-- which has a shorter tube and would be easier to unblock. If the liquid doesn't flow at all, they will cut a little chunk of the cranium, scrape out the build-up, and put the cranium piece back in. Renee and I calm with all this. His surgery is scheduled for Friday mid-day and they are going to let the girls come by tomorrow to see him before he goes through re-tube.
They are looking to do another MRI and CT scan on Saturday to check the positioning of the shunt and also check the placement for the potential cochlear implant surgery.
After the hard realities of yesterday we are trying to regroup our strength, allow our hearts be heavy for a moment, dry our eyes, adjust our dreams and look forward to a new paradigm.
In the new bad news room there are no Matisse posters hanging on the walls. Leaning on the table opposite the suede leather couch where we sit there is a framed poster, covering a framed painting both waiting to be hung. The visible picture is of jagged snow-capped mountains with clouds sifting through them. While I noticed these vaguely yesterday today I wondered aloud to Renee what the painting behind the mountain poster was. She said, with raised eyebrows incredulously, "More mountains, I looked yesterday".
In Haiti there is a proverb that says 'behind mountains, other mountains'. Our trials of yesterday will not be the only ones we have but we are trying to reach for each summit as they come, some being a little bit more difficult than others.
I picked up my Dr Seuss book with Axelle and Hannah the other morning to refresh my memory of the waiting place. As I read the rest of the book (through teared eyes that 3 and 5 year-old girls don't quite understand) I was so grateful that we have never had to go to the lonely place. We have had so much support and love shown to us and typically when I send out a particularly difficult e-mail that love and support becomes more evident.
At 3AM this morning, as I lie awake between a state of being ashamed of myself for not being stronger- blathering about like deafness was the end of the world-and feeling guilty that somehow I had let down so many people that had faith in us- in Parker's recovery- I received an e-mail which included a wonderful parable of a mother of a child with down syndrome which I found particularly heartening:
"Welcome to Holland."
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
