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)
Thursday, December 25, 2008
Sunday, December 7, 2008
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...
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...
Tuesday, December 2, 2008
Article - Sara Baker continues to improve
Sara Baker wanted to tell the doctors, "I am here," when they thought she was in a coma.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.
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.
Friday, November 14, 2008
What a week...
Sara's been fine - great actually. I have been working my tail off. Not a bad thing, since I still have plenty of tail to spare.
On the nursing front we have some good news - Nurse Martha is going to expand her hours so I can go to work at my regularly scheduled time each day. She will come in at 7am daily, but work until 0930 Monday, Wednesday and Friday and until 4:30 Tuesday and Thursday. Nurse Stacy is going to be joining our schedule. She will work Monday, Wednesday and Friday from 5:30 to 11pm. Nurse Robin will continue to anchor our schedule with Monday, Wednesday, Friday from 9:30 to 5:30 and Saturday from 5:00 to 10:00am.
This is great for many reasons: more nursing care for Sara; with more nursing care covering afternoon hours I can work on rehab items with her and still have someone to help and to cover her basic care items (which is too much to do solo at the same time); more rest for me (because I am exhausted constantly); more time to handle the regular running of the household. But mainly its best for Sara because we'll have more help to move her, exercise her, help her socialize, etc. I know she worries about me being so tired all the time. She thanks me almost every day for bringing her home, even though it is hard sometimes or I never sleep. I tell her that I wouldn't think of doing anything different - she's the best reason I know of for everything.
On the Team Sara front - her Dad is going to take over Sundays all day. He had deferred Sunday to Daniel and he doesn't participate in her care anymore, so Mike is going to take the day. That will be good for Mike and Sara, as they will get more time together, as well. And Mike also volunteers on Saturdays (and sometimes works) so his time with Sara won't be impinged upon.
Kellie continues to be my grounding angel. She checks in with me every few days to make sure i haven't gone giggling around the bend. I can always count on her to come fold laundry, bring the girls by to visit Sara, or just come over and make a pan of Pasta while I catch a quick nap.
But I have to say that my boyfriend Don has turned out to be my rock lately. It doesn't matter when or what he will show up and take care of things for me. He knows that asking is something I have a real hard time with, so he manages to put himself right in front of me whenever I might need help. He came down from Sacramento early this week so that I could go to work for a major meeting the last two days. He's taken care of Sara when the nurses weren't here, let me work on my presentations and the mountain of stuff to prep for the meetings. He's doing everything he can to help me keep my job. He has been working behind the scenes with me (and so has my son Michael) helping me work on my backlog of support tickets and projects. They're not getting paid, but helping me anyway, as losing my job would be devistating to this family.
Anyway those are the major highlights...ooh...ALMOST FORGOT THE NEATEST PART!!
Sakky and the Deviant Art community started a fundraiser to help us buy a different computer interface for Sara. It uses brainwaves, facial movements and eye movements to give her complete control of her computer. It should allow her to start slowly working on her artwork again. Well, in only a few short days they have reached the dollar goal and raised over $2000 for the Cyberlink Brainfingers interface. I haven't even told Sara yet. I plan on getting her onto Deviant Art (somehow) tomorrow and reading posts and messages, well wishes to her, and the story about her, then the news of the goal reached. She can't browse the site herself yet, but she will get such a thrill reading it herself with a little help from Mom. Sakky - you are such a sweet woman and a great friend to Sara. I can't express enough appreciation to you for remaining her friend through all this.
On that note I am going to close this post. I have a nice bed with clean sheets, a warm fluffy dog and some old comfy pillows calling my name. I think they saying something about some sleep...
And after everything is settled in the house my boyfriend will come in and wrap his arms around me while I sleep.
On the nursing front we have some good news - Nurse Martha is going to expand her hours so I can go to work at my regularly scheduled time each day. She will come in at 7am daily, but work until 0930 Monday, Wednesday and Friday and until 4:30 Tuesday and Thursday. Nurse Stacy is going to be joining our schedule. She will work Monday, Wednesday and Friday from 5:30 to 11pm. Nurse Robin will continue to anchor our schedule with Monday, Wednesday, Friday from 9:30 to 5:30 and Saturday from 5:00 to 10:00am.
This is great for many reasons: more nursing care for Sara; with more nursing care covering afternoon hours I can work on rehab items with her and still have someone to help and to cover her basic care items (which is too much to do solo at the same time); more rest for me (because I am exhausted constantly); more time to handle the regular running of the household. But mainly its best for Sara because we'll have more help to move her, exercise her, help her socialize, etc. I know she worries about me being so tired all the time. She thanks me almost every day for bringing her home, even though it is hard sometimes or I never sleep. I tell her that I wouldn't think of doing anything different - she's the best reason I know of for everything.
On the Team Sara front - her Dad is going to take over Sundays all day. He had deferred Sunday to Daniel and he doesn't participate in her care anymore, so Mike is going to take the day. That will be good for Mike and Sara, as they will get more time together, as well. And Mike also volunteers on Saturdays (and sometimes works) so his time with Sara won't be impinged upon.
Kellie continues to be my grounding angel. She checks in with me every few days to make sure i haven't gone giggling around the bend. I can always count on her to come fold laundry, bring the girls by to visit Sara, or just come over and make a pan of Pasta while I catch a quick nap.
But I have to say that my boyfriend Don has turned out to be my rock lately. It doesn't matter when or what he will show up and take care of things for me. He knows that asking is something I have a real hard time with, so he manages to put himself right in front of me whenever I might need help. He came down from Sacramento early this week so that I could go to work for a major meeting the last two days. He's taken care of Sara when the nurses weren't here, let me work on my presentations and the mountain of stuff to prep for the meetings. He's doing everything he can to help me keep my job. He has been working behind the scenes with me (and so has my son Michael) helping me work on my backlog of support tickets and projects. They're not getting paid, but helping me anyway, as losing my job would be devistating to this family.
Anyway those are the major highlights...ooh...ALMOST FORGOT THE NEATEST PART!!
Sakky and the Deviant Art community started a fundraiser to help us buy a different computer interface for Sara. It uses brainwaves, facial movements and eye movements to give her complete control of her computer. It should allow her to start slowly working on her artwork again. Well, in only a few short days they have reached the dollar goal and raised over $2000 for the Cyberlink Brainfingers interface. I haven't even told Sara yet. I plan on getting her onto Deviant Art (somehow) tomorrow and reading posts and messages, well wishes to her, and the story about her, then the news of the goal reached. She can't browse the site herself yet, but she will get such a thrill reading it herself with a little help from Mom. Sakky - you are such a sweet woman and a great friend to Sara. I can't express enough appreciation to you for remaining her friend through all this.
On that note I am going to close this post. I have a nice bed with clean sheets, a warm fluffy dog and some old comfy pillows calling my name. I think they saying something about some sleep...
And after everything is settled in the house my boyfriend will come in and wrap his arms around me while I sleep.
Saturday, November 8, 2008
Happy Smiles
Sara has had quite an eventful couple of days. All in a good way, mind you.
Her high school robotics team had a fundraiser pasta feed last night and I asked her earlier in the week if she was ready to get out and see people again. She gave me an emphatic yes blink and when I asked her if she was sure she gave me a very long yes blink. I think the girl was truly ready.
So yesterday I raced home from working late, wrestled her into actual clothes, packed her and her gear into the truck and off we went. I have to say, that it was not the most organized move, and certainly not graceful, but I got her there (and back.) Note to self: must look into wheelchair van...
She looked great. Her face was beaming, her eyes sparkling. She smiled and laughed at seeing familiar and happy faces. The first face she shined for was Dr. Immel. As soon as she saw him she started moving her head and laughing. Then she saw Mr. Weaver and soon many faces, known and new, were coming to greet her. We tried to stay as low key as possible, but that's hardly possible after everything that has gone on and wheeling a giggling quadriplegic around the room.
We took up a place near one of the walls, so I could plug in her speech computer. That turned out to be a lost cause, as she had to focus on it to communicate anything and could barely hear anyone talking to her due to the ambient noise in the room. I soon abandoned her even worrying about it and went back to straight blinks and being able to look around and take it all in.
I know it was a lot for her to take in and process. It was even a lot for me. People I didn't even know were coming up and telling her how they've been following her progress, how well she looks, and offering best wishes. Of course, everyone we do know came by and were thrilled to see her out and looking so well and happy. She truly was sparkling and joyous to be there.
And then she got a surprise. Walking up to her was Daniel. He was so surprised to see her out and there. They talked for a few minutes and despite being right there I tried to tune myself into the goings on around the room. It is obvious there continues to be a deep connection between the two of them and I have to trust that they will navigate it however needed. She was genuinely happy to see him and told me later she was surprised when he walked up.
After a little over an hour there I could see that the event (and everything it took to get her there) was starting to show to me. So I grabbed her brother and we hauled her back into the truck. He rode his bike home and helped me get her back out and into bed. She was exhausted and, quite frankly, so was I after all that. But I felt so good that I could do that for her, get her out among friends and things familiar, comforting. It has been over a year since she saw most of those people, or worn actual clothes for that matter, or participated in something other than her own care. It was a very nice time for her and me both.
When I put her to bed I asked her if she was glad we went. A big smile came across her face and then a yes blink. Me, too, I told her. It was so nice to see her so happy.
I kissed her goodnight and closed the door to her room and felt the warm flow of recognition go through me - she has come so far and she's doing alright. She's ready to be back out in the world as she is, and as she continues to fight to overcome this. And she needs that socialization and exposure. And, although there are going to be people who stare, and people who she knows who find it difficult to look at her or find ways to relate to her past her current condition, it is more important that she work towards her goals while still living her life. She's ready. And taking her first step, er, outing, among those who have supported her and grown up with her, witnessed her grow, educated her, and stood with her family and held good thoughts when she was so damaged and sick, was perfect. She was able to be there to help support her brother and robotics and see people she cares about, and they could all see her.
And the pasta wasn't that bad either...
Her high school robotics team had a fundraiser pasta feed last night and I asked her earlier in the week if she was ready to get out and see people again. She gave me an emphatic yes blink and when I asked her if she was sure she gave me a very long yes blink. I think the girl was truly ready.
So yesterday I raced home from working late, wrestled her into actual clothes, packed her and her gear into the truck and off we went. I have to say, that it was not the most organized move, and certainly not graceful, but I got her there (and back.) Note to self: must look into wheelchair van...
She looked great. Her face was beaming, her eyes sparkling. She smiled and laughed at seeing familiar and happy faces. The first face she shined for was Dr. Immel. As soon as she saw him she started moving her head and laughing. Then she saw Mr. Weaver and soon many faces, known and new, were coming to greet her. We tried to stay as low key as possible, but that's hardly possible after everything that has gone on and wheeling a giggling quadriplegic around the room.
We took up a place near one of the walls, so I could plug in her speech computer. That turned out to be a lost cause, as she had to focus on it to communicate anything and could barely hear anyone talking to her due to the ambient noise in the room. I soon abandoned her even worrying about it and went back to straight blinks and being able to look around and take it all in.
I know it was a lot for her to take in and process. It was even a lot for me. People I didn't even know were coming up and telling her how they've been following her progress, how well she looks, and offering best wishes. Of course, everyone we do know came by and were thrilled to see her out and looking so well and happy. She truly was sparkling and joyous to be there.
And then she got a surprise. Walking up to her was Daniel. He was so surprised to see her out and there. They talked for a few minutes and despite being right there I tried to tune myself into the goings on around the room. It is obvious there continues to be a deep connection between the two of them and I have to trust that they will navigate it however needed. She was genuinely happy to see him and told me later she was surprised when he walked up.
After a little over an hour there I could see that the event (and everything it took to get her there) was starting to show to me. So I grabbed her brother and we hauled her back into the truck. He rode his bike home and helped me get her back out and into bed. She was exhausted and, quite frankly, so was I after all that. But I felt so good that I could do that for her, get her out among friends and things familiar, comforting. It has been over a year since she saw most of those people, or worn actual clothes for that matter, or participated in something other than her own care. It was a very nice time for her and me both.
When I put her to bed I asked her if she was glad we went. A big smile came across her face and then a yes blink. Me, too, I told her. It was so nice to see her so happy.
I kissed her goodnight and closed the door to her room and felt the warm flow of recognition go through me - she has come so far and she's doing alright. She's ready to be back out in the world as she is, and as she continues to fight to overcome this. And she needs that socialization and exposure. And, although there are going to be people who stare, and people who she knows who find it difficult to look at her or find ways to relate to her past her current condition, it is more important that she work towards her goals while still living her life. She's ready. And taking her first step, er, outing, among those who have supported her and grown up with her, witnessed her grow, educated her, and stood with her family and held good thoughts when she was so damaged and sick, was perfect. She was able to be there to help support her brother and robotics and see people she cares about, and they could all see her.
And the pasta wasn't that bad either...
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