How we celebrate the Season

Michael making the Christmas calls with Sara.

I have a love-hate relationship with the holiday season. I love the season itself, but hate the commercialization and how crazy it makes most people. It is supposed to be a time of family, of joy, of peace. I run around singing christmas carols, happy to be singing. I walk through the store as harried people grab ingredients on the run and I take my time and smile. I enjoy seeing the sweet things of Christmas out and around.

But how we celebrate the season has slowly evolved away from the conspicious consumption and pressure-laden crush of the calendar. We've always celebrated the different parts of our heritage (Swedish, German, Jewish) as components, but never as a whole. Since I got custody of Michael and Sara, however, we have incorporated more of the elements of our heritage as complete parts. For example, we celebrate Christmas as the Kolliners did at Sunnycrest, incorporating the Swedish elements brought from the Blomquists, and we also celebrate Chanukah. The last couple of years, however, we have taken the time to learn what the Christmas season is really supposed to be - a season. And, we found that it does not end on Christmas Day - it actually starts on Christmas Day.

While researching the "Twelve Days of Christmas" I found that it runs from Christmas Day to January 6th when the 12th Night Feast would be held. It would encompass the celebration of the birth of Christ with the coming of the new year and the passing of the Winter Solstice and end in a feast on the 12th Night. So, I thought that was more appropriate then starting our Christmas season after Thanksgiving. Nobody knew Jesus was going to be born until he actually was. The celebrations of which started that night. Seems to make more sense to me. So, we as a family adopted it and have made it a tradition.

We've never really done any preparation before Christmas Eve. We have for years gotten the tree on Christmas Eve, decorated it that night, and kept it up into early January. In reading about Christmas with the Kolliners at Sunnycrest that is basically what they would do. But they would cut down the tree a week or two ahead of time, stash in the basement, and bring upstairs on Christmas Eve. This year I was the last person at a tree lot in Graton before they closed for the season. I cut down a 15' tree, picked juniper branches from a huge pile of cuttings and found Mistletoe on a tree. They guys were so nice. Amazed that I cut that tree down myself and managed to drag it through the grove myself, they gave me the entire order for $45. I couldn't believe it. You should see this tree. So beautiful.

Sara wanted us to put up every decoration we have, and wanted a big tree. Well, we have the biggest tree we've ever had and every ornament is on it. The living room is just beautiful. I hand-made all the juniper garland for the stairs and front door. And I made a mistletoe ball for above the door. Her face lit up when she saw the tree, bare of ornaments still, but huge. Just what she wanted. We didn't have any presents under the tree this year, but we had a tree. A beautiful tree. Makes me smile just to walk in the living room. She loves being in there with it.

So, during this season we will keep up our tree, welcome friends into our home (like we always do anyway) and I will bake and tell stories about family memories from Christmases past. On Christmas morning I made the traditional breakfast from Sunnycrest. On Christmas night I made a jewish dinner of braised brisket, latkas, apple sauce, creamed peas and we talked about what Chanukah means. On Christmas eve we trimmed the tree, ate hamburger helper and I gave the kids each a small present and talked about what Christmas means. The night after Christmas I gave the kids each a jar of Nutella and we talked about what chocolate means. :) (Sara can't smell right now, but she can taste...so she got a little off my finger.) I normally do a Christmas ham for the Swedish tradition and stick a knitting needle in it with a red ribbon and write Glad Jul on it in mustard - serve with red potatoes and white sauce, the day after Christmas. Finances are too tight to keep up with too much celebrating, so I'll just bake some more of the Christmas breads and cookies from Germany, Sweden, and Norway like my Grandmother used to do. The kids love it when I bake and would rather that I baked something new each day during the season then all at once. So, that's what I'm doing. It certainly takes the pressure off (financially and otherwise) and gives us a chance to share the experience and enjoy the time together.

The rest of our family will be seeing Christmas cards coming what most consider to be late. Its not an oversight from us, but a sincere desire to share our best wishes while we celebrate peace, joy and hope together.

And now, for some pictures!

Nice big open space. (Sara's piano is out being repaired. More on that later.)

Wow that is tall. Taking the netting off of the tree.

Net is off. Look at the beauty!

Sara wanted to come out to the living room after the tree was up so she could watch us decorate...we didn't want her peeking.

She was so happy she was giggling when she saw the tree and saw how big it was. I asked her if it was what she was wanting and she answered "yes" with eye blinks.

Here's the floor around Sara after the tree fell on my head. No pix of me under the tree. But I felt a lot like the wicked witch under the house in the Wizard of Oz... We lost about half of the ornaments to breakage - but they were old glass balls. We only lost a couple of special ornaments.

But...we didn't lose the Christmas Gherkin!!! (Swedes rejoice!)

Share with us how you celebrate the season and I'll read it to Sara.

Glad Jul!

What a difference a year makes...

During the holiday time it is natural to sit back and reflect on the past year. As you all know, it has been focused on Sara and her recovery.

I found myself sitting in her room the other night and marveling at this girl. She's so beautiful and smart and her eyes are just as bright and knowing as they've always been. She was teasing me with her eye and facial expressions, trying to get a rise out of me when she crossed her eyes. When she did, she'd burst into silent laughs and contorted happy faces.

I put my hands on her every day (except when sick - which I have been lately.) I like to feel the softness of her skin, warmth, and the strength of her limbs, despite the current quadriplegia. I was telling her how incredible it is that she still has the muscle mass and tone that she does, given the 14 months now in the bed. Then I really started thinking about how far she's come in that time and it really came home to me when I realized just what she could do on Christmas Day last year, compared to this year.

Last year she was 61 days since her accident and stroke. She was healing from another brain surgery, was on the ventilator, and someone had to be within a few feet from her 24 hours a day to care for her quickly enough. She was on constant IV medication and pain killers. She and I were working on perfecting her letter board, but communication with anyone but me or Daniel for more than one or two words relating to her care needs were too much. She had very little facial movement at all and she didn't move her eyes laterally yet. Her face was mostly expressionless, and looked like she was wearing a mask of her own face. She smile she started on Christmas day looked pained and twisted, but she was smiling.
Kitty visit for Christmas. She had no movement except for the start of smiling and her up and down eye movements. She was still in the neck collar and on the ventilator.
But now...this year...

No ventilator. Moving her head. Smiling. Laughing. Lifting her head. Moving it side to side. Sticking her tongue out. Lifting her shoulders. Very strong cough that causes her to lift her legs and arms. Full facial expressions and eye movements.

'Twas the Night Before Christmas...

What an eventful day.

It started off with one of the nurses, Robin, calling in and informing us that she had a family emergency to deal with. I was promptly awoken at just about 8am, started taking care of her, yadda yadda (I'll spare you the details).

The day was pretty smooth and normal until about 5pm... when mom came home with a veritably huge christmas tree (15'... no joke) and we pulled all the decorations out of the garage. We wheeled Sara into the living room so she could watch us decorate it... Me, Mom and Paulette all decorated the tree while sara watched and chatted away on her talk-box.

Well, it was pretty commonplace until the tree fell over.

Sara was fine, but not more than a foot or two to her right was Mom, who was organizing ornaments, which happened to be right where the tree fell... ornaments and all. A few ornaments survived the ordeal, but most of the ones on the tree were smashed (good thing most of them were just run-of-the-mill colored sphere ornaments, and those that weren't didn't get damaged). One of the ornaments actually landed, completely intact, on top of Sara. Again, she was completely fine. In fact, not only was she completely uninjured, but she was laughing so hard at it all that we had to rush to get the tree up so we could suction her so her sats would come back up.

Well, we got the tree vertical again then tied it to the railing for the stairs with a few guy wires. Hopefully it'll stay.

All in all, though, today was pretty calm, and I have to admit, I'm glad that she's home for christmas this year, because I know that's something she didn't get last year. It's a hell of a lot better with her here. Crazy falling christmas trees and all.

-Mike (The Brother)

Dusty

Dusty is a pretty incredible animal. He has started watching over her at night and is quick to start yelling when she is in distress.

Not many people know the full story about Dusty. Sara got him when she was 5 years old. My mother said that it is important for a child to grow up with an animal and 5 years old is a good age to start caring for one. So, at age 5 I took Sara to a friend of mine who had a new litter of Maine Coon kittens. Her first inclination was to chase around the room trying to catch a kitten. I told her to stop that and sit in the middle of the room. Her cat would come to her. After a few minutes, the smallest of the bunch ventured out from beneath a piece of furniture. He strode to Sara as if he knew where he was going. He crawled in her lap and curled up. Starting to purr I told her that her cat had just chosen her. We wrapped the tiny cat in a wash cloth (yes, he was that small) and took him home.

Once in the house and released the ball of fur took off for the nearest dark space under furniture. Several minutes of peeking and hunting for the little fluff yielded nothing, until from beneath my husbands desk came a faint meow. Sara walked over and squatted next to his computer chair to find the little kitten staring back at her. He had tangled himself in the computer cords and was afraid to move. His big gold eyes almost hovering in the dark mass of wires and dust bunnies that frequented the breeding ground below Tracy's desk. We extracated the small cat and, shaking the dust off of him, one of us commented he looked like a dust ball. That immediatly became his name, as did many variations...dust ball, dusty ball, duster, dust buster, dustaroo, duster kitty, mister kitty, old man and bitch face. The last one was given to him by Michael while Sara was in the hospital. Seems that every time i'd come in the house and he could smell her on my clothes and she wasn't there he'd read me the riot act and bitch at me.

This cat took to Sara like no other animal i've ever seen. She could put him on his back, carry him around by his forepaws, carry him like a baby, cuddle him under covers, wrap him in a baby blanket and put him in a stroller. She'd sleep with him like a teddy bear at night, and a rag doll during the day. The cat's favorite place to sleep has always been ON Sara.

He has traveled from California to Texas and back, San Diego, and many locations in the bay area. He has gone for long car rides and acted as navigator, driving coach, and lap warmer. He's flown back and forth on the airlines, always calm and never medicated. As long as he was with Sara nothing seemed to phase him.

When we got Michael's dog (when was 10) Dusty took it upon himself to school the puppy on the heirarchy of the household. Despite being declawed on the front, he handily nipped at the dogs nose and ears until he showed the correct amount of respect for the cat. I don't think the got along, per se, but they do live together well.

Then came my puppy. Dusty has never shown a maternal/paternal instinct before, but he cared for Gracie as if she were a kitten. He washed her face and ears. He'd stay close when she was cold. He'd go outside with her when she was potty training. He'd play with her until she got rough then get cat on her and she'd settle down. Gracie came to us unweaned, well below 9 weeks, and in danger of failing to thrive. When she was not tucked in my shirt for warmth, she was curled up with Dusty for warmth. The puppy spent several months on gentle formula, cat milk (canned), and baby cereal while her stomach matured and she started to thrive. The whole time the cat watched over her. he'd back the other dog off of her if he was bugging her too much.

This cat has been as large as 21 pounds at one point - not fat - just a large Maine Coon. He hovers between 12 and 16 these days, depending on how healthy he is at the time. At one time during Sara's hospitalization he stopped eating (actually, did a couple of times) and lost a third of his body weight in just a few weeks. His fur got dull. He didn't clean himself as well. he didn't seem to really care about much. When we would take him to the hospital he'd perk up and start eating, grooming, and talking again.

Well, since she's been home the cat has done incredibly well. he is up to 16-17 pounds, eyes bright, coat shiny, and a happy, purposeful stride about him. It took him a few weeks, but he has taken in about Sara and doesn't spend much time away from her. Nightly he is in her room, taking the night shift and cat naps and watches over her. When I come in for her 2am breathing treatment he gives me report, meows at me a few words, goes to the box (in the other room) and catches a big drink of water. He then comes back and takes his place on the chair in her room, facing her.

During the day, when nurses are around, he can be found sleeping on her bed - getting his rest for the day - so that he can be awake for his night shift.

I am amazed at the love this animal shows for her. Her condition is hard for us humans to understand and we have the benefit of information and discussion. He has had to come to terms and find his own way without anything other than his love for Sara to guide him. It means so much to her to see him walk over her, come check her face, and curl up around her feet. She knows he loves her and he is going to help her in any way he can. That equates to "fur therapy". He lays down next to her and she can feel him - his warmth, his purr, and it makes her truly happy. It always has.

I'm just amazed at what an amazing animal he turned out to be. From that scraggly little kitten being drug around by his tail by a 5 year old, to a gorgeous large cat with a chatty disposition and a large heart walking all over the girl he loves just because he can.

Finding our rhythm

Sara's been home a couple of months now and we seem to finally be finding our rhythm. It has helped so much to have the three nurses. We are still way short of her entitled nursing hours, but it is very manageable.

We've been able to start adding back in the range of motion exercises, speech therapy exercises, and work with her more on communication. Before we had the three nurses all the nursing items were handled by either a single nurse or me - and that left no time or energy for anything else. It worked out fine, though, as Sara just needed some nice rest time and to settle into her home environment.

So, now, the load is shared among the three nurses, Mike, Michael (as needed), Don (as needed) and myself. And, due to her breathing getting so much better and maintaining her oxygen saturations better she has longer periods of not needing suctioning. I don't know if you remember, but the number of suctionings per hour was a deciding factor for whether she could go to Vallejo, when she could move to Rossmoor, if she could come out of ICU, and when they felt she could come home. So, I do watch that frequency as an indicator of her progress or current status.

I do think I need to get her into Kaiser for a little check up - get a good listen to her lungs and make sure we're all clear. Her secretions are good and she coughs out any junk she accumulates, so I'm sure she's ok. I just like to make sure, as respiratory issues are her greatest risk.

She remains in good spirits, although she hasn't had any visitors. I told her that it is just going to have to come down to her reaching back out to them, communicating with her computer, and helping people start to figure out how to relate to her again. That and we will have to start really getting her out of the house and going places. Let people see her out living. Its still quite an event to try and get out of the house. We don't yet have any appropriate wheelchair-accessible vehicle and she's still in a manual chair. Last time we took her to the hospital we howled laughing at the jury-rigging job we had to do to get all the required oxygen and equipment to hang off the chair. It took us two hours to get her packaged and transported and back into the chair, was at the hospital only 45 minutes, then another hour and a half getting her back the other way and to home and bed. Luckily we were all laughing at how completely inept we looked man handling a laughing quadriplegic in and out of a volvo.

I love how she laughs at everything. We struggle, she laughs. We mess up, she laughs. We curl up our noses at something in her care, she laughs. She has told me that since she was forced to slow down she can better see how comical everyone else's toiling really is. She has stated that its easier when its slower.. She may have something there...

I finally got through the mountain of paperwork, mail, and related junk that has accumulated around the house for months. I get mail from the box and it gets tossed onto yet another pile or box. Well, I finally got it all opened and organized. Now I can start to get the filing, and bill paying organized and done. I'm real bad at paying bills. I just can't seem to either remember to or discipline myself to stop everything and sit down, balance everything, and write checks. Before Sara's accident I was doing it. Had come a long way on dealing with finances and getting disciplined - I was doing it with her as she did her stuff, too. So, anyway, I've asked another friend of mine who is real good about it to help kick me back into rhythm with it all. I can't keep waiting until something is either shut off or my phone is ringing incessently for me to sit down and handle the household items. Ironically, i'm like clockwork for the items related to Sara and her care. Bills for her stuff and taken care of as soon as I get them. I guess I'm kind of thinking i'll get to the rest of the stuff soon, then time gets away from me.

So, having more help around here with her is making it possible for me to get back to the business of taking care of the whole family, not just her. And, getting back to the business of doing work stuff at night and weekends, which keeps them happy.

So, I'm going to get back to it. Just finished the piles, started dinner and now will start getting the piles to their respective correct area. I have two major ones - Current Bills and Sara Action Items. I have several applications and supporting documentation to submit for different services - new and ongoing. And getting the current bills all in one pile (the first time since we've moved into this house) will allow me to but them into my budget spreadsheet and start handling things a bit neater and quicker. It does feel good to look across the room, from my office to the kitchen, and see a lot less things sitting there, waiting for me to get time or energy to handle. Little by little, in our own areas in our own ways, we get there day by day.

Right now Sara is sitting up in the wheelchair in the living room watching Sunday football. Yes, Sara likes to watch football. She and I used to lay around on the couch on Sunday afternoons and do it, too. The team really doesn't matter. It's just nice to watch good looking, in shape men, do what they love and ooze testasterone. Then we'd watch Extreme Makeover Home Edition. She's on me to put in an application for her and all the paperwork. Week after week we watch other people and families with huge challenges get help to change their lives and make things easier.

One reason for my hesitation is that you can't be actively involved in a lawsuit when you apply. Well, that kind of holds us off until our legal actions are settled. There are people responsible for parts of what happened to Sara, and certainly for how bad it got. The neurosurgeon at Santa Rosa Memorial who missed the vertebral dissections in her neck and let her have a stroke, then delayed sending her to another hospital because he didn't think she had insurance. He wasn't qualified in Trauma, but yet was the person standing there making decisions based on his limited understanding of Trauma or experience as a Neurosurgeon (only been one for 6 years.) And he barely examined her and just went home. Yeah...we need to get this settled before applying for an Extreme Makeover. Maybe we'd be able to get what we need for her ourselves and let ABC/Sears help others who can't find another way. She wants to look in his face - let him see what he missed and let happen to her - through his complacence/negligence/limitation - and be held accountable the only way he can. Too bad you can't have a doctor change places with you so they can REALLY know...

Ok. enough on that. have to check on dinner and keep going with the piles of paperwork.

More soon...

Article - Sara Baker continues to improve

Sara Baker wanted to tell the doctors, "I am here," when they thought she was in a coma.

http://www.theoakleafonline.com/2008/11/20/sara-baker-continues-to-improve/

I'm so sorry

it seems that i've left so many people hanging regarding Sara, and at the same time stopped the slow of support and nice comments for her. I've gotten entrenched in trying to be all things to all people and do all things instantaneously that I am finding that I am getting nothign done for anyone regardless of the time involved.

So, anyway. Enough of that. I'm just pretty depressed at everything - not with Sara. She's fine. Well, a little with Sara's condition. I want her better and its hard sometimes seeing her this way. Don't hate me for honesty. Stand at the foot of her bed day by day and not have the memory of her flying through the air, beautiful and strong, executing a perfect Tae Kwon Do movement quick to memory while the site of her lying there fills your eyes...

I have a lot of update on her to post up here. There have been some very neat things happen for her. (got to find out about part of the family she's never met and that they know about her and think about her - and have sent a little help her way.) Some changes to her condition - little things - more time on room air - some more trace movements. An update on the legal front. An update on the home front about Michael. And some holiday notes.

So, I will sit down and get back to blogging. I think I need the outlet and to focus on the positives again, too.

I do wish her friends would come around again. we're trying to get her out to see you guys, but I can't do that very easily. I know its hard to see her like this, but its still Sara. She has just as hard a time relating to you with life moving on, but please don't forget her. She misses her friends so much. And I miss you guys coming around, too.

Ok. enough sad sack crap.