Falling Behind...

I have been falling behind in my blog posts as I have been reminded on several occassions lately. It is not that nothing has been happening, but rather that so much has been happening. Unfortunately just not with him. He has settled into his new enviornment and they are learning about him. They are trying to make him as comfortable as possible and are trying some new things with him. Some new approaches to his physical therapy and some new medications. So far things remain much the same. It has been a relief, not having to drive to the bay area, and staying with S&S has been wonderful, comfortable and normal. A nice change of pace. The girls have gotten to see him at their whim, for as long as they like. This has been a good thing, but also a reckoning. I think for them, while they wanted to see him, and asked about him, the distance also gave them a buffer from the situation. I have noticed a change in H on her recent visits. She is no longer the giddy cheerleader, bouncing in, trying to elicit a reaction. She has become more somber. More contemplative in her visits. Some have asked me what or if I tell them of his pronosis, but I have elected to let them lead. To let things take their natural progression. I knew that she would start to question, start to come to terms with the reality. She has. She has not given up hope, but the frenzy has subsided. She visits him, and looks into his eyes and talks to him, but she comes away with resignation. It is a hard thing to watch. It was inevitable but still a hard thing for a parent to watch in their child. I try very hard to balance their lives in other ways. To be so young and have to deal with something so grave, robs them of an innocense. I have tried to focus their energies instead on honoring thier father by doing the things that he would want and expect them to be doing. It is still hard, but it is time to start moving forward, to think about the future. Not leaving him behind, but in the ways that we can carry him with us, so that he continues on. We still hope for the best and continue to research and provide the best opportunities that we can, but life is not standing still. My children have not stopped growing. I have to keep moving forward for them, and reminding them of the best parts of him. The things that are not lying in that bed, his love, his laugh, and his spirit that lives on in them every single day. So we are moving ahead, trying to find new things to look forward to, continuing to surround ourselves with our family and friends. Moving ahead, even when feeling like I am falling behind.

To everything, turn, turn, turn....

There is a season. It has been another busy couple of weeks. As I said before, it is amazing to spend a year and a half emotionally raw and fighting every day. Eventually you build up calluses. I was starting to feel numb to the routine. Putting one foot in front of the other and juggling my balls in a pattern that I had become familiar with, then they were plucked out of my hands and tossed up in the air to settle into a new pattern. Some legal issues are almost settled, he has been retired, officially. WC declared their intentions. I finally got the answers to my burning questions about health insurance. With one answer, it seems a new question is generated. I have new questions on the horizon, some that may never be answered. I fought for all of those months to have him placed in the brain injury program, to give him the opportunity that he deserved. That process became it's own adventure. The drug therapy, the defibrillator operation....and then the abrupt transfer to Fairfax. The one without my request or consent. I grew to like and appreciate the facility and the staff, but the drive was killing me. 4 hours each way. I had to farm my kids out every weekend. We had no down time at home, the girls and I. We would run all week for school, activities, etc. then drop everything, be gone all weekend, get home Sunday night, and start the week behind. Play catch up all week in between ferrying the girls around and still never get anything done. It was killing me. I am sure I have not been much fun to live with. A little over a week ago I got word that a bed was available in the sister facility to the one he is currently in. It is more like a group home than a hospital. It is a home-like environment, 6 beds. They have speech therapy, physical therapy and occupational therapy on site. It is not as shiny and new as the one he has been in (although there are plans for a remodel) but it has the same amenities, the therapies, the whirlpool bath, home environment. He moved on Thursday. The day before the Halloween Carnival, for which I was the coordinator for our class. Right before Halloween weekend when the girls were so excited. So I spent Thursday getting him settled, Friday back at school, Saturday took the girls to see him, Sunday back home for Halloween, Monday back to school. Whew. It will take some getting used to. A new collection of staff to become familiar with. For them to learn about him and us. The best part? It is just outside of Roseville 90minutes away! S lives less than 10 minutes from him! We can stay with her. The girls can see him. The facility sits on 5.5 acres and has rolling lawns and a duck pond. It has a paved driveway where they can ride their bikes to show their dad. It has a long covered patio, where the girls spent hours drawing pictures for him with sidewalk chalk. It has a little porch swing, where they swung and dangled their legs and called out to him, giggling as they did. They can come with me. I can have dinner with them in the evening and put them to bed. If something happens when I am home, I can be there in 90 minutes or S can be there in 10. That is a good thing. The rest we will have to work out. There will be change. Some good, some not good. We will have to forge on and make a path. We will do our best. That is what I tell the girls when they look at me and tell me how much they miss him. I say "I miss him too, more than anything. But what would Daddy want us to do? Our Best. He would expect us to do our best each day."

To everything - turn, turn, turn
There is a season - turn, turn, turn
And a time for every purpose under heaven

A time to be born, a time to die
A time to plant, a time to reap
A time to kill, a time to heal
A time to laugh, a time to weep

To everything - turn, turn, turn
There is a season - turn, turn, turn
And a time for every purpose under heaven

A time to build up, a time to break down
A time to dance, a time to mourn
A time to cast away stones
A time to gather stones together

To everything - turn, turn, turn
There is a season - turn, turn, turn
And a time for every purpose under heaven

A time of war, a time of peace
A time of love, a time of hate
A time you may embrace
A time to refrain from embracing

To everything - turn, turn, turn
There is a season - turn, turn, turn
And a time for every purpose under heaven

A time to gain, a time to lose
A time to rend, a time to sew
A time to love, a time to hate
A time of peace, I swear it's not too late!

Falling into Fall...

The last weeks have been a blur of life and legalities as some of the battle of the last year and a half are finding resolution. Of course, these things would all conspire to occupy the same time period. When I have felt the enormous weight of it all, I keep telling myself to plow through, to keep treading water. I am sure that a month from now, when some of these issues are at long last off of my plate, I will be glad they are over instead of lamenting their timing. I admit it is bittersweet, these resolutions. To know that some battles are over, that we have won them, should feel like a relief. On the other hand, those fights have claimed the empty hours of my thoughts, have kept me focused and on task. They have forced me into a strict routine, to keep to a deliberate plan. To be freed of these weights should bring a sense of peace. I am sure it will with time. My first feelings were of emptiness, of my world dropping off again. When you are juggling this many balls it should be a relief to have one removed, but I felt the loss. I felt his loss. I suppose it all really goes back to the way I deal with things and process life. When our world was irrevocably altered, I made a plan. I looked ahead to the possibilities, and made a plan. I thought of my goals, and what I would need to do to get there. I thought long term, and as new balls were bounced into my lap, I thought about where every one of them should be in the line up, and how they would help or hinder my process to the goal. No shift is unplanned. So when someone unexpectedly plucks one out of the air, and casually says "you don't need this anymore!", there is relief as the weight is gone, as you start to move the other balls more freely, have more time and space for them. It is also anti-climactic. When you have to control your anger, pain and rage, to channel them into something useful, something to help you rather than hinder you, it gives you a certain clarity of vision. You compress them, all into a single minded goal. It buoys you, gives you strength. You don't really think about the why, or the how, you just do. You take everything that is handed to you and use it. In the process the goal, is what you are working towards but it becomes almost mythical. It is not that you forget what you are fighting for, but that the process of the fight becomes all consuming. When it is finally over, it feels sudden, and you stumble. There are still more battles to be waged. More fights to be fought. He is still fighting the biggest battle of all, and we still know very little about what might be going on in his head. I am sure that this time next month, I will be relieved. For now, I am a bit at a loss. Still trying to find my new rhythm with one less ball to worry about. It is at these times when it all hits so hard again, like ripping the band-aid off of a wound. In the end, it is better to rip it off quickly, but at the moment you pull it off, it hurts. It is excruciating.

"My life has been such a whirlwind since I saw you
I've been runnin' round in circles in my mind
And it always seems that I'm following you girl
'Cause you take me to the places that alone I'd never find

And ever as I wander I'm keeping you in sight
You're a candle in the window on a cold dark winter's night
And I'm getting closer than I every thought I might

And I can't fight this feeling anymore
I've forgotten what I've started fighting for
It's time to bring this ship into the shore
And throw away the oars forever

No I can't fight this feeling anymore
I've forgotten what I've started fighting for
And if I have to crawl upon the floor
Or come crashing through your door
Baby I can't fight this feeling anymore "
REO Speedwagon

Another Fork in the Road...

Over the last year, there have been many paths we have travelled that I thought we never would. Today marked the start of another one. There was no fanfare or celebrations, but today he became "retired" Sheriff's Detective Eric Christopher. I am not sure it is actually "official" as no one has notified me in writing or otherwise, but when we had our meeting, they gave me today as the day. It has been just over 15 months now. Fifteen excruciating long months, with few answers or understanding. Today marks the start on a new path. The symbol of another door closing. The finality of a part of him, and a part of our life together. In the land of uncertainty, it is defined. I do not know where it will lead, it is all uncharted territory for us. Another fork in the road.

The Week.

The week in review. It is hard to believe that after over a year of time, so much comes to a boiling point in the very same week. On Monday, I finally met with the county and had my questions answered. There was an apology given, an excuse, an explanation. "Things were complicated by WC...." I heard them. I understood what they were saying. I understood those complications from the beginning. I also told them, that while I appreciated the difficulties of the situation, had they simply communicated that they needed more time, instead of ignoring me. Ignoring all of my attempts at communicating, not calling on the days and times specified by them for such communication. That I made myself available each and every one of those times, but was left waiting. That the unforgivable part was not in the fact that they were unprepared to meet with me or discuss my questions. The unforgivable part was failing to keep me informed. Failing to tell me that they they had jumped the gun in initially agreeing to discuss it, and that they needed a little more time. Much of my frustration, my fears, my changing plans, the extra worry, all could have been relieved with a simple communication. I hope that is now surely understood. That being said, the meeting was fruitful. My questions were answered. He is set to be retired at the end of this month. I understand what that means. I know how it works. I know how long I will have medical coverage. Questions, answered. Wednesday was a hard day for me. Many people knew and I got quiet messages through the day. It was his 40th birthday. 40 years old. 22 years ago I met him, we were both just 18. I remember the first birthday gift I gave him. We had just been dating weeks. Mad magazine, red licorice, and liquid starch. (ROTC uniforms) I also gave him a card. I ran across that card recently when looking in his things for something. In all of these years I have not seen it. He saved it. On Thursday I had to go to court. To gain conservatorship of my 40 year old husband. Friday found me making the 4 hour drive back over to see him, and as it is Sunday afternoon, I am preparing to make that same drive home. The girls did not know it was his birthday this week. I kept it to myself. They knew we did "daddy's race" for his birthday and D brought a cake and everyone sang happy birthday and it was a good day. It was a happy day for them. I didn't want them to close their eyes that night missing him any more than they already do. I didn't want them to feel that loss any more sharply. I will drive home tonight, pick them, tuck them into bed, get their things ready for school in the morning. I will unpack our suitcases, and do the laundry, set out their clothes for the morning. I will have a nice long shower before bed, and when I am there, I will cry. I will cry because I miss him, because they miss him, and because of all he is missing. When I wake up in the morning, the week will start all over again. Another day. Another week.

Juddgement day.

Judgement day, but is it mine or is it theirs? After almost 3 months of aggressively trying to get answers from the county, they have finally agreed to meet with me. They are supposed to have answers to a specific list of questions. We will see. Out of the blue I recieved an e-mail that they were ready to meet with me and discuss the issues of my concern. It contained a perfunctory one line of generic apology. Not much concern for adding more onto my burden, no excuses for setting up phone meetings, then failing to call me, no apologies for failing to even respond to my multiple messages. No explanations for initially responding that they would discuss the issues with me, then completely ignoring my many attempts to contact them. It will be interesting to see how this all plays out. I do take well to being ignored. I do not appreciate having unnecessary burdens put into my lap. I do not tolerate cowards, shirkers, or people that avoid their responsibilites well. We will see how they do with me. It is judgement day. Today I am thinking of him. Thinking of his way of facing the world, with honesty and integrity, yet willing to fight. I hope it doesn't come to that.

For him....

Risin' up, back on the street
Did my time, took my chances
Went the distance, now I'm back on my feet
Just a man and his will to survive
So many times, it happens too fast
You trade your passion for glory
Don't lose your grip on the dreams of the past
You must fight just to keep them alive

[Chorus:]
It's the eye of the tiger, it's
the thrill of the fight
Rising up to the challenge of our rival
And the last known survivor
stalks his prey in the night
And he's watching us all with the eye of the tiger

Face to face, out in the heat
Hangin' tough, stayin' hungry
They stack the odds, still we take to the street
For the kill with the skill to survive

[Chorus]

Risin' up, straight to the top
Had the guts, got the glory
Went the distance, now I'm not gonna stop
Just a man and his will to survive.

Eye of the Tiger: Survivor

As the days fall into years....

It is hard to believe that this month is here. It marks 22 years of our relationship. 22 years since we met as 18 year old kids, out of the house for the first time, and anxious to find our own way in the world. 22 years of the best times I could ever dream of and of the worst. 22 years and I am the only one who thinks about it. The girls have no concept of time, and how amazing that is. He is not aware of the time or it's passage. It is enough time to have born a child, raised them, and seen them graduate from college. A long time, yet not enough time. It is funny, they say that people change. People don't change. They grow, they adapt but they don't change. At the core of my being I am still that same girl who met a boy in her college laundry room. The girl who was reserved, cautious, and responsible, who met the boy with the heart of a boy scout, and an adventurous spirit. She recognized in him the passion for life, the quest for adventure, and the humor that she longed for. She was excited to be able to be able to have someone to show her a different path, to always make her laugh. She was the anchor that held their foundation firm, sometimes while they travelled together, and often keeping it solid for him when he returned from his own adventures. She is still trying, but she misses the laughter, as the days fall into years...

In Her Daddy's Shoes...

Do you recognize those green eyes? How about that wide infectious smile? They are his, and she did him proud as she does every day. She ran her daddy's "birthday race", she greeted everyone we knew (and many we didn't) with cheers and high 5's as we were on the trail. She is amazing.

Victory is ours!

Well perhaps that is a tad melodramatic, but we are victorious because we all made it across the finish line! This year we had 5 registered 3 person teams, 3 registered solos, several of the team members did two legs of the race (their second leg just for fun)and one did the whole race for fun. We also had several others come out and walk the 4.5 miles with the girls and I. It was a great day. It was amazing. R, D & the Mehoffs joined us, and showed up with an amazing amount of food, which we all appreciated! He would have loved to have been there. We all had our shirts on, and every time we passed one of our shirts out there, we had big cheers. We had one team place 3rd in their category, we won an award for having the biggest "family" represented, we got a medal for the youngest registered participant (10 years old and he did the bike and the run! Although next year he will have competition as H ran the whole run as an unregistered participant!) and our star of the day G who did the entire triathlon (for the first time!) and won her category, but we all won that day. We all went out there in spite of all of the obstacles of the last year and we finished. I was listening to H & E talk about something the other day, and E said "well my daddy always says try, try again, and do your best". We did. We did our best. He would be proud.

We're off to see the Tinman....

We are leaving right after school tomorrow to head up for the triathlon. The race will be Sunday morning, but we will spend a little time enjoying the cooler weather and just relaxing before the big day. We are excited to have a great group of teams and several solo participants as well. We will bring out our shirts and have a good show. The girls know that we are going to do the race again for daddy. They are excited. They associate it with his birthday. They think the whole triathlon is a celebration of his birthday. We will all celebrate for him, doing something that he loved with people he loved. I haven't had much time for regular training, but am hoping the leaf blowing and weedeating that I have been doing, will be enough to get me over the finish line. MAC is coming down to swim for my team again so I figure she is my ace in the hole! We are packed. We are ready. We are off to see the Tinman....... See you there!

Still Standing..

The last two weeks have been busy ones. I feel like I am always saying that. The pace of life seems to have picked up so much, there is never enough time to fit it all in. Perhaps it is also as I tell the girls "Mommy has all the jobs to do right now". My jobs, his jobs and everyone else's jobs as it seems no one does their job any more. Some things have started to change for which I am grateful. Someone spoke to the SO on my behalf and made them aware of what was going on at the county. This ripple caused someone with a little more muscle than I have, to become involved. He has been able to get ahold of the people who have avoided my calls, and they have to have answers for him. Oh there is still bureaucracy, but things are starting to move forward and I think they understand that their actions are being observed. I really appreciate that. I suppose that knowing that they were causing me more stress and grief was not enough of an incentive to do the right thing, but knowing that others are holding them accountable was. I have finally been informed that they are moving forward with his retirement. I am not sure when it will all be in place, but at last I have been enlightened as to their intentions. There are many other factors still in play. I am at least expecting to be informed as the process moves forward. I spent a glorious day last week being deposed by the naughty people. It is excruciating sitting across the table from 3 lawyers while they probe the details of your life. Asking you ridiculous questions like "do your children have any effects from this event?" Words cannot express the profound impact this has made on their lives, on all of our lives. But the obvious answer is not good enough, they want to watch the emotion flood over you, they want to dissect your every move and response. They want to challenge you, your memories and your life. Seven hours of fun. Driving home to make it just in time for back to school night. Then off the next day to go and see him. Spend the weekend with him, then back in time for school. And then it starts over again. I am sure we will establish a new routine. H is still getting used to full day school, it is much more of a transition than I thought it would be. Kindergarten, I now realize was much a world of it's own, but first grade is a whole new deal. The first few days she came home looking like a victim of PTSD. She is adapting, slowly. She likes it, but so much change challenges her. She is talking about missing him alot again. How can she not miss him when things are challenging, he was her knight in shining armour, bigger than life, her daddy. And so we cycle back around again. Every night with the anticipation of the new day and the new challenge, brings up his loss. When she gets into bed, and is finally alone with her thoughts, I see the sadness reflected in her eyes. I would give everything to be able to take that away for her. E jumped right into preschool, it being so familiar to her. She lives so much more in the here and now, is more connected to me. It is a double edged sword. On one hand such a relief to be able to spare her some of the pain, but on the other hand, the deep sadness that her memories will not be as vivid. We are making a path, two steps forward, one step back. But at least we are still standing.

The Coward of the County...

Yep. Still nothing. No phone calls. No e-mails. No letters. Nothing. Nada. They have not contacted me in form to address my questions. How glorious. It is amazing to me that they still hold their heads up, while committing such a gross neglect to the family of an officer of this county. Not even return my calls. Not even send me a letter if they were too cowardly to speak to me on the phone.

Everyone considered him the coward of the county.
He never stood one single time to prove the county wrong.
His mama named him Tommy, the folks just called him yellow,
Something always told me they were reading Tommy wrong.

He was only ten years old when his daddy died in prison.
I looked after Tommy 'cause he was my brothers son.
I still recall the final words my brother said to Tommy:

"Son, my life is over, but yours is just begun.

Promise me, son, not to do the things I've done.
Walk away from trouble if you can.
It won't mean you're weak if you turn the other cheek.
I hope you're old enough to understand:

Son, you don't have to fight to be a man!"

There's someone for evr'yone and tommy's love is Becky.
In her arms he didn't have to prove he was a man.
One day while he was workin' the Gatlin boys came callin'.
They took turns at Becky... there was three of them!

Tommy opened up the door and saw his Becky cryin'.
The torn dress, the shattered look was more than he could stand.
He reached above the fireplace and took down his daddy's picture.
As the tears fell on his daddy's face, He heard these words again:

"Promise me, son, not to do the things I've done.
Walk away from trouble if you can.
Now It won't mean you're weak if you turn the other cheek.
I hope you're old enough to understand:

Son, you don't have to fight to be a man!"

The Gatlin boys just laughed at him, when he walked into the barroom.
One of them got up and met him halfway 'cross the floor.
When Tommy turned around they said, Hey look! ol yellows leavin'.
But you coulda heard a pin drop when tommy stopped and locked the door.

Twenty years of crawlin' was bottled up inside him.
He wasn't holdin' nothin' back; he let 'em have it all.
When tommy left the barroom not a Gatlin boy was standin'.
He said, this ones for Becky, as he watched the last one fall.

Twenty years of crawlin' was bottled up inside him.
He wasn't holdin' nothin' back; he let 'em have it all.
When tommy left the barroom not a Gatlin boy was standin'.
He said, this ones for Becky, as he watched the last one fall.

And I heard him say,

"I promised you, dad, not to do the things you've done.
I walk away from trouble when I can.
Now please don't think I'm weak, I didn't turn the other cheek,
And papa, I sure hope you understand:

Sometimes you gotta fight when you're a man".

Kenny Rogers-

The Tinman

Summer is ending, school is beginning. I ended the last weeks of summer by first getting my first ever case of poison oak. My eyes swollen shut, arms, legs, covered. I tried all of the over the counter aids, nothing worked, as I slowly watched myself swell like a balloon. I finally went to immediate care and got the shot. Good choice. If I ever look at poison oak again, I am going down and getting the shot. I recommend the shot. I love the shot. Cleared up enough to drive over to see him, only to come home to the stomach flu. Now that I am at the end of that one, it is time to get some walking in for the Tinman. Yes we are doing it again. Not as much fanfare as last year, I think it snuck up on all of us, but I think we have 5 relay teams and 3 soloists signed up. (I think the Mehoff family will be there too, not in the count) MAC is coming down from Portland to swim for us again, and we will again break out our shirts and celebrate him. His life and his love of life. An important thing for his girls and for all of us to be reminded of. So if you are there, come and see us. We won't be hard to miss.

School is Here!

It has been a busy summer. I can't believe that school is about to start. It just doesn't seem possible that another school year is starting and he won't be there. H is going into first grade. She is excited, thrilled, and can't wait to be back with all of her friends. E moves onto another year of preschool, this time with N as her teacher and she is equally exicted. Of course I am excited for them. I happy that someone else will have a turn to entertain them, as they have their father's energy and it can be exhausting being the only one on deck. Especially H, she has her father's blue green eyes, his smile, his quickness to laugh, and also his relentless energy. She literally bounces down the hall, cannot stand still and have a conversation with me, watches TV by bouncing herself like a pinball off the livingroom furniture. Something I know all too well. I lived with it for the last 20 years. A friend once called me and during the course of our conversation, she asked where Eric was. I told her I had locked him outside. "Locked him outside??" She was confused. "Locked him outside!" I confirmed. I told him that he had to play outside for awhile, because I was getting ready for company and he was bouncing off the walls in the house driving me nuts. Oh he ran from door to door making faces for awhile, before giving up and finding something else to entertain him. Now I am raising his daughter without his help. She is him. Entertaining, infectious, happy, athletic, outgoing, amazing.

Disrespect.

I am tired of being disrespected. I understand that what is going on in my life right now, is simply part of the job to some people. I understand that. But if it is part of their job, they should do their job. I have never travelled down this path before and their are bound to be forks in the road, a map would be nice, but if one is not available, then there should at least be someone I can stop and ask for directions. I knew that his year on WC was getting close to and end, but I did not know what happens next. Does it end right at a year? What happens from there? Does he retire? Go on disability? How does that all work? I asked the questions but no one had answers for me. I had a meeting at Human Resources for the county months and months ago. I had questions for them then, many of them they were unprepared to answer, but they promised to get the answers for me and get back to me. Still waiting. I asked when WC was going to end and what happens next. I got a letter dated 7/9/10 informing me that his WC benefits were "going" to end on 6/26/10. Yeah 13 days after they ended they mailed me the letter. Nice. At the end of June I contacted Human Resources again, trying to have my questions answered. Tried several times to get ahold of the main person, only to be told almost 2 weeks later that he was on vacation and someone else would be helping me. That person sent me an e-mail saying that he was getting the information together, and would be prepared to go over all of my questions. I asked for him to call me the following day. He did not. I got a coworker who told me that he would call me the following day. He did not. I contacted HR again, this time I got an e-mail from the coworker again, saying that the man could call me any one of 5 times over the next two days. I said great. I would have my phone with me the whole time and he could call me during any of the 5 times they suggested. Two days passed and I did not get a call. I contacted the coworker again, and said that I had not received my call. I was informed that the man had to go out of town but that my concerns "were a priority to him" and that he would call me back the next Tuesday when he returned. That was this Tuesday. Yup you guessed it, no call. Not Tuesday, not Wednesday, not Thursday, not today Friday. A priority, right. I have been trying to contact them for a month. A month I have been waiting to find out what is happening to our future. Do we still have benefits? How long do they last? What can I expect? A month, and they cannot get back to me. If this is your job, do your job. Because what is your job is my life. My livelihood. My future. Do I really not have enough to deal with, enough uncertainty, enough instability? It is disrespectful to me. It is disrespectful to him. And it is disrespectful to all of the people who are still doing that job, thinking that if something happens to them, that their families will be taken care of. Disrespectful.

When it rains....it pours......

It seems that I have more lessons to learn. My life is not destined to be a smooth path for sometime. I was just trying to plan out my last weeks of summer, to make the best choices for him, for the girls, for us as a family, when another curve ball landed in my lap. K went into the hospital. She is never sick. She is my rock. She was in the hospital for 8 days, right across the hall from where he had been. The first time I came flying out of the elevator, it was like it had opened a window to my past. She is out and better now, but as I was gaining strength again, it took me back to feeling vulnerable. She is the one here who has been with me longer than him. It was humbling, again. I was fortunate that S had come to stay and help me with some projects at home, because she was able to stay with the girls and let me go to the hospital. When I saw her walk out of there, I was much relieved. I had already been planning to take her girls and mine to Portland to visit his sisters, and we decided to continue with the plan. As we were on our way, I got the news that he was being transferred two weeks early. While we were to be gone. They changed the plan again. I understand why they did it, but I am not mentally prepared to deal with sudden change right now. I need time to adapt the plan. I need time to get used to any changes, to figure out how the change is going to affect every other piece of the plan. I knew that his time would be up at the beginning of August and that it would be time to move him back closer to home. That was the plan. They decided to move him for a month to a transitional care facility that DrD still works with so that she can continue to monitor his progress for a little longer and then after a month, another evaluation to decide on the next step. He will continue with his drug therapy and to receive 15 hours of therapy per week, in hopes of seeing more improvements. I want him to be in the best place for him, but I am also getting frayed. I have alot of balls in the air and my arms are getting tired from juggling. K made me promise after her hospital stay, that I would take care of myself. A task that should be second nature but seems like another burden to juggle. I promised. I am trying. I just don't know how many more balls I can keep in the air at a time. I am struggling to find a balance. It just seems that when it rains, it pours.

The Thirteenth Year.

Today is our 13th anniversary, this past year being the 13th year of our marriage. If I was not superstitous before, this year has not inclined me towards the number thirteen. H asked me recently about our wedding "ball" and I pulled out our pictures and let the girls look through them, seeing us as we were and so many other familiar faces. They were delighted to compare us all then and now. Daddy didn't have any facial hair, but uncle S had a moustache! I let them each choose a picture to keep out for themselves. We have a few of the formal posed ones in the hall at the house, but they each chose a candid shot of the day. In the past weeks, those photos have found their way to tea parties, the trampoline, a picnic basket, and a trip the the beach among others. It is interesting for me to observe, and think back to that day and those two people standing there, having no idea how this life would unfold for them. The innocence. The anticipation. The love. The dreams. Some dreams have come true, as I see the picture of their dad and I propped up next to a naked barbie, an oversize tea cup in front of it, a small child happily chattering away to them both. And some have been undeniably crushed. I remember that couple, not quite kids but still not quite grown, making their plans, thinking of their future and celebrating life. I think of the song we danced to, and how it seemed that we had forever stretching out in front of us...

I'll always remember the song they were playin',
The first time we danced and I knew,
As we swayed to the music and held to each other,
I fell in love with you.

Could I have this dance for the rest of my life?
Would you be my partner every night?
When we're together, it feels so right.
Could I have this dance for the rest of my life?

I'll always remember that magic moment,
When I held you close to me.
'Cause we moved together, I knew forever,
You're all I'll ever need

Could I have this dance for the rest of my life?
Would you be my partner every night?
When we're together, it feels so right.
Could I have this dance for the rest of my life?
(anne murray)

I never thought that time would pass so quickly, that days could seem so excrutiatingly long. I never thought I would be a mother, whose children's father never saw a single day of their school life. I never thought the thirteenth year would be life shattering. Forever altering. I have spent the last two days with him, and as with every milestone, it makes me emotional. It makes me so deeply sad. This was not our plan, the life we laid out together. This is not even a speed bump. This is irrecvocable, a wound that will never heal. I knew there would be hard times, life would be difficult. and I still signed on.

These times are troubled and these times are good
And they're always gonna be, they rise and they fall
We take 'em all the way that we should
Together you and me forsaking them all
Deep in the night and by the light of day
It always looks the same, true love always does
And here by your side, or a million miles away
Nothin's ever gonna change the way that I feel,
The way it is, is the way that it was

When I said I do, I meant that I will 'til the end of all time
Be faithful and true, devoted to you
That's what I had in mind when I said I do

Well this old world keeps changin', and the world stays the same
For all who came before, and it goes hand and hand
Only you and I can undo all that we became
That makes us so much more, than a woman and a man
And after everything that comes and goes around
Has only passed us by, here alone in our dreams
I know there's a lonely heart in every lost and found
But forever you and I will be the ones
Who found out what forever means

When I said I do, I meant that I will 'til the end of all time
Be faithful and true, devoted to you
That's what I had in mind when I said I do

Truer than true, you know that I'll always be there for you
That's what I had in mind, that's what I had in mind,
When I said I do
(clint black)

Our Baby is 4!

I can't believe our baby is 4 years old. This is the second birthday of hers he has missed. He has been away for a quarter of her young life, and the percentage just keeps growing. It is so hard to look at her and think that she might not remember first hand how much her daddy loves her. She will have pictures and videos and all of our memories, but I do not know if she will ever see his head thrown back in laughter and his belly shaking with delight. I don't know if she will ever see pure joy on his face as he catches sight of one of his girls. It is a hard thing to grapple with. From the time they were small I told them that I had picked the best daddy in the world for them. It is true, and so unfair that they are not getting this time with him. She had a great day, our little E. She is a funny little girl, who is mostly content to go with the flow. She was so excited to be celebrated and to have everyone there for her. She was lovely and gracious, and thankful. She was a delight to watch. H&C let us use their lovely yard and pool and we had family and friends come for summer fun. S bbq'd hot dogs, K made her the most amazing ladybug cake, K,C&A made all kinds of ladybug food and decor. It was a great day. They were just kids, running, swimming, playing, it was a great thing to watch.....But he was missed.

Another day, another wrench...

It seems every time I turn around there is another wrench tossed at me, or another ball to juggle. Workers Comp only pays for a year before it shifts back to long term disability and while he is on that I have to work on filing for his retirement. I have spent the last two weeks back and forth on the phone making calls to get the proper paper work and getting estimates and benefit sheets, reading over it all and talking to the represenatives so that I may figure out which option to chose for retirement. I get all of my paperwork filled out, I have flagged all of the places his employer must fill out, and mailed off workers comp's portion to them. I have made copies of everything from our marriage license to the kids social security cards. I have established legal guardianship and provided them with the court documents. Then, on the last phone call, I get yet another represenative and am told that in addition to the guardianship, I need to now file in family court for conservatorship that specifically states that I have the right to choose an option for his retirement. I need to find yet another attorney that deals with family court issues and file for conservatorship. It is unbelievable to me how many hoops there are to jump through. I think my manual must be on back order because I still have not gotten it. I do not know how people navigate all of this without going insane. Or maybe that is what they are counting on. That a certain percentage will just give up, that is it just too hard. That they are not as stubborn and hard headed as I am. I don't know. I just know I am tired of juggling, and I need a manual.

Anniversary.

That word is usually preceded by the word happy, which in this case does not apply. There is nothing to celebrate this anniversary, no congratulations to be handed out. It is more a day of reflection. It has been a year. A full year. That is more than a quarter of my youngest daughter's entire life. I think psychologically I have been preparing for this day for the last few weeks. I recently attended a memorial service for a friend and it seemed that tears were constantly brimming. I was sad for her, I was sad for the family, my friends. I was also just sad. Sad that these things keep happening. Wondering how much people can endure. In the course of this one year, I have lost my grandfather, an uncle, two friends, and my concious husband. That is more loss in one year than I have seen in the last decade. I am tired, exhausted really. Today was a day I felt the weight of it all. I remember with such vivid detail, the phone call I recieved one year ago this morning. I remember packing up the girls and heading down the hill, not having any idea the journey that I was about to embark on. I certainly would have never envisioned being here. The girls had no idea that today was any different than any other. We stayed home. The first full day home in awhile. I cleaned and sorted, often my thoughts a million miles away. I did hair, buttoned dresses, tied bows and buckled shoes, but my mind was on that fork in the road, and the path that was chosen for us. I spoke to only a couple of people, most probably not remembering the significance of the day. It was quiet. I was quiet. And when the girls were finally asleep. I cried. I am crying still as I write this and finally give form to the thoughts that have been tumbling through my mind all day. It is as if the emotion has been compressed tightly in a ball, and has suddenly exploded, almost bursting from my skin. It is almost tangible. Certainly painful. It is the anniversary.

Today is Father's Day....

Today is Father's day and I will spend it in the same way that I did Mother's Day. Alone at my husband's bedside. The bulletin board on the wall covered with pictures of our babies, their artwork and handmade cards for their dad. Another day of childhood celebration that we gloss over, so the pain will not be so great. Another distraction so the loss will not be felt so deeply. I don't know when that part will get easier. I look into his familiar eyes, and they are so the same, so him, that part of me wants to shake him and yell "say something dammit!" When I touch his forehead or shave his jaw, and he furrows his brow or tightens his lips as I shave around them, I wonder how much harder it can be to blink or nod when I ask him to. I don't know. They started his drug therapy with the first cognition increasing medication and have been slowly increasing the dose. They added another activating drug to the list, and tried it for a few days but it seemed to have the opposite effect and it zonked him out. Yesterday the added a different one to his mix and hope within a few days they will know if it is helping. I notice today he has been more vocal. Not upset, but just making sounds and noises. Of course I hope it is him trying to say something, but I cannot know for certain. I also do not like to analyse anything that he does or says. I leave that to the professionals. It is just too exhausting, trying to make sense of every sound and movement. He has been awake for long and longer periods of time. Seemingly just watching the world go by. I do not know what he sees or what he understands. If these are signs of the medication, or if it is coincidence but time will tell. We continue to hope for the best. To believe that he wants it as much as we do and that if there is a way, he is actively looking for it. We will continue to try to shine the light for him, and hope that he sees it through the fog.

Overwelming...

I went to the post office today to pick up the mail I had help while we were gone. They brought me a big plastic mail tub, and offered to let me take it to my car because they did not think I could carry it all myself. Yeah that much. Of course there is always alot of garbage and this time of year even more so with the campaign fliers, air conditioning companies trying to drum up business and the regular junk mail. Then there are the bills, all the usual ones, then a whole stack for just his medical care, various correspondence from 3 different attorneys, a notice from the dmv telling me I need a smog for my diesel truck (really? I have to go in and deal with their mistakes now on top of everything else). Of course the magazines, mostly his. And lastly the two pieces of mail that are actually enjoyable. So I lug that box home and sort through it, culling the junk from the pile and making sub categories for all of the rest. Of course while I am doing this I look out the window and see the weeds that have not only sprouted but multiplied since I have been gone. Those rains right before we left, and the sun while we were gone gave them the perfect conditions. I have the mountain of laundry that I emptied from our suitcases. 24 messages on the answering machine. Grocery shopping, the usual household chores,and house projects in progress. I made progress. I did half the laundry, changed all the beds, cleaned and sorted the girls room, opened and sorted all of the mail, listened to all the messages, wrote out the bills, went to the post office, went grocery shopping, filled 1/3 of my orders and made my list for tomorrow. And I am tired. I got a random message letting me know that WC was going to go over and see him today. Barely into his drug therapy and they want to go over and observe. To make sure we are not wasting their money I am sure. Funny, when he was stuck in Redding all those months they did not seem nearly as concerned about wasting his time...

Endings and Beginnings...

We just ended H's first year of school. Kindergarten. He missed it all. The whole year. Milestones. Something we will never get back. E started preschool and has one more year before she can start kindergarten. That's it, our last shot at it. Oh I know life is full of firsts but I never thought I would be facing them all alone. Of course while the school year was winding down, ballet was winding up for their big performance of the year. This was my first year with a child in school, so when I saw that the performance was the day after school got out, I did not think too much about it. When the flier went out asking for volunteers to help with make up, costumes, etc, I did not think too much about it. I spent my time out in the ballet "sweatshop" making tutus, sewing, gluing etc. When I got the rehearsal schedule, I thought I would figure a way to juggle it all. We had graduation, bridging ceremony, practice, rehearsal, swimming lessons, regular class, a field trip, and I managed to keep juggling. S came up to help me the last few days, and I could not have made it over the finish line without her. things got a little hairy at dress rehearsal, it was way over time, the communication was not good, I was trying to entertain a flock of 6 year olds in full costume, and a very well meaning, stressed out individual decided to speak to me in a less than respectful manner in front of the children, about a matter that could have been simply resolved. Not really a good idea. Not after my week. I never raised my voice, but I know my point was made. The actual performance went off swimmingly. H was thrilled to once again be on the stage. As a matter of fact she has been actively producing her own shows for some time, the last one in my living room, where she cast herself as director, producer and star (snow white), and she cast her sister as the prince, all seven dwarves and the forest animals. She is quite something. She loves her time on the stage and does not seem to have any fear of it, wonder where she gets that? After the performance we left right for the airport. We flew down to San Diego to spend a week with A&M, it was baby A's first birthday, and they held the party until we could join them. It was lovely and that little girl is devine. The girls adore her, and have made up their own song about her. We spent time at the beach, the park, shopping, the boardwalk, and just hanging out. It was good to see them all. We flew in and S met me at the airport so she could take the girls and I could come directly over and spend time with him. And here I be. Our school year ended, and the summer begins. His drug therapy has begun. The time of inactivity has ended. It is they cycle of life, endings and beginnings. We do not always know when we open a door where it will take us. If it will lead to a brick wall or open to beautiful possibility. We hope for the best and prepare for the worst. Endings and Beginnings...

Drugs!!

Whoever thought I would be thankful and relieved to say my husband was on drugs. But I am. He has finally started the long awaited drug therapy. They are starting off slowly with one drug for improving cognition, and will monitor his progress. After that they will switch it up and try something new. They will rotate about every week or so for the next few weeks and see how it goes and if he has any greater response to a particular drug or drug type and then we will have it. It being our evaluation. It will go one of two ways. He will show some changes or responses, or he won't. If he does, they will come up with a further plan. He will stay in Kentfield as long as they think necessary, then the will transfer him to a step down facility where he will continue with his drug and physical therapy. If he does not show response or improvement, they will also let us know. The decisions from there will be hard ones. Any of the decisions will be hard ones. It has to be better than living in limbo. It is so incredibly hard to believe that it will be one year this month. A whole year, and the pain is still there. Still sharp. There are more days in between the really agonizing ones, but the pain is still there. A year and he is just now being evaluated. A year, and he is just now getting drug therapy for the first time. Amazing. discusting, and reprehensible. But for now, we've got DRUGS!

The Morning After.....

He fared well through the night with no obvious signs of distress. He was soundly asleep when I got back to him this morning. I was not there too long before transport came to pick him up and take him back to Kentfield. He did fine for the entire 3 minute, 1.5 mile trip. I followed behind and we got him settled into a new room, next door to his old digs. I got all of his pictures and well wishes posted back up on the wall next to him so he has his own inspiration board to draw from. It makes an impressive sight, and I think that it lets all the staff who come to see him know how special he is. He has done remarkably well. I am hoping that inside there, he is doing his own preparations, knowing that his time is coming. They will let him rest through the weekend before trying anything taxing. But his time is coming. Next week there will be a new plan, and we hope he will cooperate, time will tell.

D-day Update.....

He came out of surgery just fine! They started late, and it took a little longer than originally expected, but he is resting comfortably. He woke up and came out of the anesthesia just fine with no sign of nausea. They are keeping him here until tomorrow, just to monitor the device and make sure it is functioning properly (which it is). He was a little uncomfortable when he first woke up, but quickly calmed. He has been awake all day and very relaxed. They did shave most of his chest, so he has that superhero thing working for him. I think this is actually the first time, in 21 years, I have ever seen his bare chest! I am glad to have this behind us now. It is both a relief and a cause for anxiety. Before the surgery, we knew we were waiting on the surgery before having any real expectations. Now that obstacle has been removed, the ball will once again be in his court. They will move forward and try some new therapies and medications. The unknown will be more known. Some questions will be answered, and I am sure some new ones will arise. It is somewhat like making it through a deep tunnel, only to stumble into a large outdoor maze. You are so glad to see the light and feel the fresh air on your face. But then you turn around and realize you have a whole new challenge to navigate. Glad to not be in the dark, but missing the security of the walls. We will rest up one more day, before picking up and venturing forth to see if we can find our way through.

It is "D" Day!

It is D Day, or defibrillater day! He was transfered last evening to Marin General where he is to have his defibrillater implanted. I came up after H got out of school yesterday. I dropped them off with C, the girls were so excited to be there with all of the kids, they hardly were concerned about my leaving. K would come and pick them up later and keep them for the next three days, running their routine so I could come and be here with him. He was very comfortable last night, very relaxed. I spoke with both doctors, and they anticipate everything going smoothly. I am in a small waiting room outside the surgery, keeping myself busy as I wait. It should be a simple routine surgery to implant the small pacemaker like device. If his heart goeas out of rhythm then it will shock it back within seconds. The real fun is about to begin. After this is all done, and has been declared a success, he will begin the long awaited drug therapy. This is it. Finally. What we have been waiting for. Keeping my fingers crossed and waiting..........

Hitting the ground running.....

I am sure it is no surprise that we can back from the big "D" only to hit the ground running. Time is running out in both preschool and kindergarten. There are festivities to plan, projects to finish, a dance recital pending, so many things on the horizon. We came home to the eye of the storm. Of course I came over to see him as soon as we got back. He remains comfortable and relaxed. It is a good place for him to be, a place where they try to find out what is going on in that hard head of his. They actively work to make him comfortable and isolate potential problems and things that will impede progress. This is what they do, and that is comforting. It is easier to be further away, when see the abilities of the staff. Easier, comforting, in some ways, but of course the realities of the situation are neither of those adjectives. I am a person who stays the course. I believe in the big picture, but not getting too far ahead of myself. I believe in determination, both his and mine. I choose everyday to keep moving forward, to continue to make this life for my children, the best that it can be given the circumstances. Someone not too long ago, questioned my decision to have them participate in so many activites right now. Why would I commit myself to school, ballet, swimming lessons, and t-ball, all on top of the household, the yard, the finances, the business, and my time with him. The questions are difficult but the answers are simple. It is their time. This is their childhood. The only one they are going to have. It has been irrevocably marred by this horrible tragedy. There is nothing I can do to change that. These last months, they have missed out on something so important, they don't deserve to be sitting in a grieving house too. They have to learn to be resiliant, to overcome, not to wallow. The life skill H's class has been working on all year is being "flexible". It is a concept she has come to grasp. All of these things have made it harder on me. They take more time, energy and resources, sometimes I am tired, lose my patience. The reward is that they are thriving. They are learning teamwork, communication, dedication, persiverence, friendship, and other life skills. They are learning that we pick ourselves up, dust ourselves off, and get back up on that horse. It isn't easy, often exhausting, but it is the right thing. Of course this does not mean that we all do not have our moments. Even me. I try not to let my mind take me much further than this week or the end of next. I try to stay focused, but there are times, especially when I am alone with him, that the pain of the situation creeps up on me. More like crashes over me. It is always there threatening to creep, and something will happen and it will swell up and wash over me, a huge flood of emotion. Mother's day, was a day like that for me. The girls were with their grandparents and I was alone at his bedside. Of course one could not help but compare the day to Mother's Days past. There were no muffled whispers from the other room, no paper crowns, or lumpy packages with hand drawn wrapping paper. It was just he and I, and only one of us was talking. That was a day when I felt the weight of it crash over me, and anchor me to the floor. I sat with him and cried. I lay my head on his shoulder and I took the comfort I could from his shoulder. I let myself be unhappy, angry, sad, heart broken, frustrated and sorry for myself. Then I got up. I kissed him goodbye, packed up for the drive home, and prepared for the next week, to hit the ground running......

Disney Aftermath....

And this is what too much Disney fun looks like the next morning.....

Disneyland Mom..

Well I wrote the last post with the intention of writing this one immediately following. Obviously that did not happen. Another busy week. The last week of April, I got to be Disneyland Mom. Yup, we took the girls to the big "D". When I say we, I am of course referring to R&D. They planned the trip. We had actually tentatively planned this trip for last year, but time time got away from us and we never made it. D approached me with the idea around Christmas, and I decided to throw my hat over the fence and say yes. I knew that it would give the girls something big and exciting to look forward to. (think leverage) They have been looking forward to it for months. C helped them make a paper chain to help them mark the time. We all flew down on Tuesday and stayed through Sunday. 5 glorious fun filled days with two 6 year olds and a 3.5 year old. There was relatively little drama, and they all were very brave and tried new things. H even went on Space Mountain and Indiana Jones! She thought both were a little fast, and was not interested in repeating them. Her favorite was the Haunted House, which she thought was really cool. E did not want to go on anything that even looked like it might possibly be scary. We tried Peter Pan and after that she would not go on any of the other rides that she could not see from outside. She did however LOVE It's a Small World. We also spent some time at the California Adventure. We got to see all the 3D shows, It's a Bugs Life, The Muppets in 3D, and a couple of others. We also got to see the Aladdin show, and the Mickey Mouse Clubhouse Live Show. We got to see the parades and the fireworks, have lunch with the princesses. The highlight of their week was the princess makeover. There is a little place at the base of the Cinderella Castle that is called the Bippiti Boppiti Boo Boutique. Each girl was assigned her own "fairy godmother" who took them through the boutique to pick out their own dress, shoes and crown. Then D and I took them into a dressing room and changed them into their new finery. The fairy godmothers came to collect them and take them to the salon, where they were given princess hairdoos, painted nails and sheer princess makeup. The fairy godmother then waved a glitter dusting wand over their heads. The curtains behind their chairs drew back, and a mirror was uncovered, the girls getting to see themselves for the first time. They watched as Tinkerbell magic flew around the mirror, and roses suddenly bloomed at the base of them. It was truly a little girl's fantasy. Then a "royal footman" came and curtsied to them calling them Princess, and led them to a room with Cinderellas coach. They got to have their pictures taken in the coach. The whole time D and I were giggling to ourselves as the girls just became engrossed in the whole experience. They even taught them the proper "Princess Wave" which H proceeded to give to her subjects while riding the carousel horses. It was a magical experience for them. We missed him. The girls both mentioned it on more than one occasion. But it did not define their trip. They had a great time and are still talking about it. R&D did an unbelievable job keeping us all moving. We had three adults to three children and it worked wonderfully. We were even fortunate enough to have A&M come up one evening to have dinner with us. It was a good trip, even a great trip. It was so good to be able to step away from our routine and be able to do something fun with the girls. In the scope of their lives, the ultimate fun experience. I got to be Disneyland Mom. I did not manage that feat alone. R&D, and everyone else who helped make that possible. You know who you are. It was a terrific gift to give the girls, to give all of us. Thank you. This was something they will remember for their entire lives. E is so proud of her Minnie Mouse ears that she still is wearing them around. They are still telling everyone about the trip. Sharing in both classes last week was all about the trip. Of course we started planning the trip months ago. Before we knew what would happen with him. Before we knew when he would be moved. It was a little stressful for me to be away with his move so recent. It all went fine. He was fine. He is fine. Still holding his own. This time he stayed home. He rested up, spent some time alone, sleeping, and relaxing. I took the kids on their adventure. We switched roles. Those are big shoes to fill. I think we managed to do him proud......

Disneyland Dad....

Everyone knows how much and how hard he worked. He loves that job. Loves it. I have always had people ask me how I could deal with it. How I could do it with him gone so much. Gone at odd hours, for days, weekends, birthdays, holidays.... and then when he was with us, checking out license plates as we are driving down the road, calling T to talk about a case, talking to victims on the phone on his days off....Before we had kids, it suited me just fine. As anyone can attest to, he has more energy than 10 people, and I could never keep up with him. Or entertain him. He needed the frantic pace and the constantly changing influx of information, it is what drove him and made him thrive. I am a loner. Always have been. I am content to be quiet. To sit and read, to be by myself with my thoughts. I could go all day without talking to anyone and I would be fine. I like it when the house is quiet. Before children I would often stay up until 3 or 4 in the morning and sleep later into the morning just so I could enjoy the quiet of the night. I would do my house cleaning, my latest projects and my reading in those quiet hours. After children, sleep and the elusive quiet were the things that I mostly only dreamed of. But he also always understood this about me and he would make time to take the girls out and leave me in the house to enjoy my quiet. He would call himself Disneyland Dad, because he would plan an entire weekend of activities and not be afraid to grab the girls and go from sun up to sun down. He might start off with a 6 am fun run, pushing the jog stroller, then he would be off to the park, then to a street faire, off to ice cream, back to town for the next roller skating session. Inevitably he would drop by the sub to check his e-mail or drop something off, and the girls would have fun entertaining daddy's friends. If there was a matinee at the movies, they would surely be off there next, then off to try a new park and see if they could find any geo caches, probably run by Walmart for some things he had been meaning to pick up. They were busy. He was 100% on when he was there. He encouraged me to have time for myself and enjoy it without feeling guilty. I remember the first time he got to hold H after her birth ordeal. Brain surgery at 6 days old. Days in the incubator (or aquarium as he called it), it was a scary time. A time many people would be nervous to even contemplate more children. But he held her in his hands slightly bouncing her up and down, she looked back at him with her identical green eyes and he looked over at me and said "I want more of these!" I would have to say that fatherhood changed him. He went from student of life to teacher of life and he has always relished it. Before he wanted to ski the slopes, dive in the ocean, go on hikes and runs, roller skate and play on the beach. Since they were born he wants to do those same things but at their pace, wants to experience them through their eyes. They have experienced many things with him. With their Disneyland Dad.

Miles to go...

I got to finally meet DrD yesterday. She is the brain injury guru around these parts and many others. In any job environment, there are always politics and disagreements. Hospitals are no better and in many cases worse. I am sure there are some of the same issues here, but one thing is not. There are no complaints or snarky comments about DrD. Every single staff member has nothing but wonderful things to say about her. They say she is dedicated. They say this is her life. They say she is amazing. They say she is the best. They say we are lucky to have her for a doctor. Today one nurse told me that she has seen anoxic brain injury patients be wheeled in here and then walk out, she says she had never seen that before. Sigh. So what does she have in plan for him? Well, she wishes he had gotten here sooner (don't we all??!) she has to counteract some bad habits that he has established and then she has to prepare him for treatment. He had been given nothing to help him relax, no muscle relaxers or anything, and after months of this with very little physical therapy, he is tense, he is tight, and is favoring certain positions. When he is moved or stretched it causes real and phantom pains that in turn cause him to withdraw or tighten further. The immediate goal is to relax his limbs, muscles and his brain. Let him feel the simplicity of peace so that when they start the regime, he is in a place to venture out if he is able. From my understanding of brain injury, it can be very scary for them as they are trying to figure out how to respond. Their nerves and signals can misfire and send mixed messages. A simple touch on the arm, can be interpreted as pain in an injured brain. By relaxing him first it can make him feel less protective and more accepting of changes as they are introduced. The next big thing we found out is that he is going to be getting the defib (pacemaker like device) installed probably this week. The doctor does not want to start therapy on him only to have the ticker rebel like what started this whole mess. In the middle of typing this, we just had another visitor, a special eye doctor. She came to look at his eyes and see if there was any noticeable damage. We have noticed that bright light seems to bother him, and that he squints his right eye. After examining him she determined that the cardiac event caused a muscle contraction that has forced his right eye slightly off. The result? He is probably seeing double. This does explain the light, how he seems uncomfortable with rapid movements in front of him, and how he seems to furrow his brow and squint when trying to look at something. She said it can cause him headaches and confusion in addition to seeing double and being unable to focus.. They can give him a shot of botox in the eye to release the contraction. It will last up to 6 months and at the end of the time, his eye will either be retrained to stay in place or he could have another injection. Another thing to help him be in optimum fighting mode. Another new thing we have discovered since we have been here. I know it has been two weeks today and we were all hoping to see him jump right in. Throw some drugs at him and see if it works. A bit like getting to Christmas morning but finding you can't open your gifts until Valentine's day. Anticipation. Expectation. Rehabilitation. I will take the first two to get the third. We still don't know where we are headed. if it will work, but what we will know is that he was given the opportunity to succeed. That is really all I can ask for. DrD is in charge. I am grateful to finally have a guide on this journey. It has been a bit like being dropped in the middle of an unknown forest and trying to find your way out. I could see the sun overhead. I could feel the ground beneath my feet. My children were behind me asking "are we there yet?". There were no signs but I chose a path and committed to it. Now I have met up with someone who has travelled this path before. She doesn't know yet what obstacles may have fallen since the last time she travelled it, but she knows a few things to watch out for as we travel along. We have found a map, it is outdated and does not have all of our journey charted, but together we will add to it as we make this journey. We will stay the course, and find our way out no matter which path ends up taking us there..... "The woods are dark and deep, and I have miles to go before I sleep......."

I Wonder....

I Wonder......
When I was younger I believed, that dreams came true.
Now I wonder.
Cause' I've seen much more dark skies, than blue.
Now I wonder.

I keep on praying for a blue sky, I keep on searching through the rain.
I keep on thinking of the good times, will they ever come again?
Now I wonder.
Now I wonder.

They are starting slow with him, but they are starting. Unfortunately with one step forward there is always at least one step backwards. Today they discovered he has a UTI and they will have to give him IV antibiotics to clear it up. In the meantime they are still trying to decide what to do about the heart to make sure it is stable enough to go through the treatment. The defibrillator (pacemaker) is still on the table and the decision should be made in the next few days. He has been very stable these last months on his medication but they want to make sure it remains stable as he goes through the more aggressive therapies. It has been a tough week on the home front as well. This week in school is all about Dad. I knew there was a "date with dad" at the end of the week, but going into the week, I did not realize that the rest of the week would focus on it as well. I spoke to H in advance about "the date with dad, or other special person" and we talked about how much she will miss him. S offered to step in for him, and she is excited to take him to school and show him around, and have special time with him. The last two days we have not had as much enthusiasm. Her allergies are in full force and she has dark circles under her little eyes. She is sneezing all over the place and I can tell her little head is full. This only makes her more sensitive. I have watched the melancholy come back to her this week.At school there were stories about dad, sharing was about dad,journaling about dad, and stations that revolved around dad. It was a little too close to home this week and I could see her feeling it. I watched her become more clingy and fussier. I saw her gaze drift and knew in her mind she was a million miles away. I kept her busy this week, very busy. They had lots of things to do and look forward to but still there is always something missing, and no one is more aware of it than her. Then we have the other child, she is "lucky ladybug of the week" in her class, and she has patiently waited all school year for her turn. She is on cloud 9, she is so excited, and she has the whole routine all down pat. She knows what is going to happen at school, she knows she gets to share every day, and she is very focused. The first night she brought home the special ladybug backpack, I went into their room to check on them and make sure they were tucked in. I noticed that E was not in her bed. I first thought she was in with H, but after rooting around for her, a feeling of panic set in and I made a cursory check of H's bed to see if she was in with her sister. I could not find her there so I ran down to my room to check and see if she went to my bed. She was not there. I was really starting to feel the stress and ran back to the girls room to check again. I rechecked both girls beds, then started to search around the room. I finally got to the closet and found her there on the floor in her little footie jammies with her head on the ladybug backpack, sound asleep. I picked her up and carried her back to bed. In the morning I asked her what she was doing in the closet with the ladybug. She told me she was showing the ladybug her clothes so they could pick out her outfit for school. So on one hand I have this child. This sweet child who so patiently waited for her turn with the ladybug backpack. And on the other, I have the other child. Also sweet, but also sensitive. It has been another week of riding the roller coaster and trying to find a balance. I wonder when it will get easier.....

When I was younger I believed, that dreams came true.
Now I wonder.
Cause' I've seen much more dark skies, than blue.
Now I wonder.

I keep on praying for a blue sky, I keep on searching through the rain.
I keep on thinking of the good times, will they ever come again?
Now I wonder.
Now I wonder.

I keep on praying for a blue sky, I keep on searching through the rain.
I keep on thinking of the good times, will they ever come again?
Now I wonder.
Now I wonder.

When I was younger I believed, that I could win.
Now I wonder.
There was a time when you and I, walked hand & hand.
Now I wonder.

I keep on searching for the old me, I keep on thinking I can change.
I keep on hoping for a new day, will I ever feel the same?
Now I wonder.
Oh I wonder.
Now I wonder.

(Chris Issac)

Que Sera Sera......

I drove over to see him on Friday. S met me in Yuba City and took the girls back to her house so I could get on the road. I was able to spend Friday, Saturday and Sunday with him. His parents found a little apartment for us all to stay in, that is literally right next door the hospital. It is very nice to be able to step out for a few minutes and be right there. We are going at different times so that he continues to have visitors almost every day. I think last Monday was actually the first day since all of this began that someone was not with him. We all feel very close and protective of him. That day was a hard day for me. Knowing he was there, and I was here, but realistically I know that this is his time. That my presence there will not change change the outcome. There may be a time where I can affect things, but right now, it is his time. They have to figure him out and he has to figure them out. I am impressed by how much staff they have there. There are always people in and out. They have a set routine and schedule and they keep it moving. It is good for him, I think he needs a schedule. I am a huge believer in the schedule. I think it gives us security and makes us feel safe. I hope it does that for him now. They are working with a cardiologist to have him properly assessed before they start their regular drug and therapy routine. They want to make sure his heart is stable and he is in the best condition he can be in. We met with one of the speech therapists and she spent some time just talking with him and asking for small responses. I was able to take him outside and we found a lovely deck surrounded by greenery and a small creek running along the outside. We spent about 4 1/2 hours out there Sat, enjoying the lovely weather. E and J came up to visit us and spent some time with us outside visiting. It is always nice to have fresh eyes. It helps keep things in perspective. It helps validate our own feelings. It helps to digest what you see. I spent a good part of Sunday with him before heading back to pick up the girls and head home. I had two calls from the doctors today as they are working out his treatment plan. I know he is in a good place. I know he is in the best place for him right now. I am so glad for him to have this opportunity now. He deserves to have it. It is up to him now. Que Sera Sera, whatever will be, will be. The future is not ours to see, que sera sera........

Nothing Ever Changes, if Nothing Ever Changes...

That is a quote that A reminded me of today. So true. We have made big changes, and are hoping for big changes. Already there have been more changes in the last 24 hours than in the last 9 months. Changes with his treatment plan that is. They are calling in a cardiologist to do a work up on him and determine his his current cardiac health and status. He has also not had a cardiac consult since he left Chico in August. They want to do this in order to make sure he is in his best shape to withstand the aggressive drug and therapy plan that they are putting together. How wonderful. Finally some movement. Another question to have answered. Nothing ever changes, if nothing ever changes......

The Eagle has Landed!!!

Well we made it. We finally made it. I arrived here about an hour before he got here. When my feet touched the ground, I actually got a little weak in the knees. It was the adrenaline crash I think. It felt like such a big hurdle to have crossed. It was surreal that it had finally arrived. I met with the admissions coordinator and she congratulated me on a fight well fought. She told me that she had never seen it end this way before. She also suggested to me a new career in patient advocacy. She told me that she had seen many people become exhausted by the system and give in. She also reassured me that this was a place where they believed in aggressive treatment. They would try many things, and if something is not working they will scrap it and try something new. It felt really good to hear that. I also told her that I fought to get him here because he deserved the chance. The opportunity. That however this road ends, I have to be be right with him, and with his girls. I have to be able to look at them and know I did everything reasonably possible to bring their father back to them. That I provided to him every opportunity to succeed. I think these next weeks will be critical. They will finally be the ones that will give us answers. They whole staff seems to be very vested in their facility. They have also been encouraging and reassuring about the the program. DrD the director of the brain injury program will not be in until Wednesday and so these next days are just to let him adjust to his new environment. They will then be putting him through his paces, directing him through 3-4 therapies per day with drug stimulation therapy in addition to that. After we got him settled in his room, his things unpacked and all of the intake done, we had some special visitors. San Quentin has 8 dedicated beds in one of the wings of the facility. They keep it regularly staffed with correction officers on rotating shifts. A correction officer and their supervisor heard about him and wanted to come and pay their respects. They reassured us that they would make a point of checking in on him during every shift. It was a very emotional day, a day of changes. But it was finally change. Movement. A step forward. Towards what, we do not know, but it is a step.

Off to see the Wizard......

We are enroute! Transportation confirmed! I will meet him there! We're off to see the wizard....

For Reals this time...

Isn't that what you used to say when you were a kid? For reals. For Real. Really. They confirmed that his bed was open today. Kentfield was ready for him, but the transport company could not move him today. I offered to tether his chair into the bed of my truck. They did not seem to think this was a good idea. I suggested a little brisk air might perk him up, they offered that they had arranged transport for 9am tomorrow (Sat). It will make for a more hurried trip for me, I have to be back Sunday to get the girls ready for school Monday. I will at least be able to get him settled and meet the staff. Really it will be up to him after that anyway. I have been telling him, whispering in his ear, that he can rest now, but once he gets there it is time to work. This is it. His big chance. For reals this time....

Braxton Hicks...

Those false labor pains you can get when pregnant... They feel like the real thing, so much so that many an expectant mother has ended up at the hospital only to be turned away with the inevitable "false alarm". Braxton Hicks, false alarm....leads me to why I am sitting on my living room sofa instead of a hospital room in the bay area. I spent all evening getting ready for my trip, making plans for the girls, getting the house in order, doing the laundry, the dishes, writing out detailed daily activity logs, just make sure I had all the bases covered. I arranged for pick ups, drop offs and back ups. This morning I got up early to finish my orders, to pack the car and make sure I had my addresses and phone numbers at the ready. The girls were dressed, the lunches and backpacks packed and then I got the first call. "we may have a problem." There was some waiting, some phone calls back and forth before we finally got the official word for the day. The bed at Kentfield did not open today, so we go back to being on red alert. We are shooting for tomorrow, again. Hoping.

TOMORROW< CONFIRMED!

I just got a message that he moves tomorrow morning at 09:00am! They have scheduled transport to pick him up then and start the journey to Kentfield! I am moving forward with plans for the girl as I plan to stay with him thru Sunday. FINALLY! Tomorrow, Tomorrow, We'll move him tomorrow, we're only a day aaaawaaay......

Any day now....

The girls and I got back from our trip over to the coast. We had a really nice time. A pretty quiet time, but quiet is really what we needed. The first day we spent most of it hanging around the house and watching movies. H spiked a little fever and seemed tired but otherwise had no symptoms. She perked up by the next day and was racing around again by yesterday. Saturday brought our busiest day with time for shopping in Mendocino, an afternoon playing in the waves at Caspar and some scenic exploring in Little River. We were fortunate enough to stay in a lovely house in the Redwoods, and the kids had an amazing easter egg hunt in the midst of a small clearing surrounded by huge redwood trees, it was gorgeous and they had a great time running around trying to find all of the eggs. We got back last night to snow flurries. Just enough to be bothersome while I was trying to unload two kidlets and all of our stuff from the car, but by morning it was pretty much gone. The girls slept in a little this morning, and then we headed up to see him. He was tired when the girls were there and slept in his chair, they went home with Nana while I stayed with him for a few more hours. We got his hair cut and moustache groomed in anticipation of his big move.He woke up and we watched CSI and did our bills. I still take them with me every month and talk to him about the expenses as I write out the checks. We are literally waiting for the phone call. It can be any day now. As soon as a bed opens up he is moving. They have transport standing by. I have my bag packed and in the car. Any day now.....

Red Alert.....

This has been a crazy week. They all are it seems. Maybe that is just to be the way of our life for awhile longer. I finally got the long anticipated signed agreement to send him to Kentfield. Which was a huge relief, but it put us on red alert. Red alert because he is moving as soon as they have a bed available. I got the call on Monday that a bed might be available Wednesday and to be prepared in case. I frantically ran around trying to get all of my ducks in a row, while maintaining the girls regular schedule. S came up to stay with me for a couple of days so that I could get all of my orders out and the all the details worked out for the girls.I packed a bag and put it in the truck, much like when I was pregnant. The bag packed, waiting for the call. Ready to go at a moments notice. Of course when Wednesday rolls around, the bed is not available so he is not moving yet. The bag is still in the truck. When I spoke to the NCM she did not think it would be until the beginning of next week now that it is a holiday weekend. So I switched gears again, and kept to my original plan for Easter weekend. We came over to the coast with K & C. It was where we spent last Easter and several before that. I made sure the NCM had my contact information so that if anything changes, I can go off to Kentfield from here and meet up with him there. But for now we are here relaxing, remaining on red alert, but trying to give the girls a memory. A good memory. We are in a different place this year, as the memories are strong, and he is everywhere with us. The girls have been excited, wanting to come over, but still when I picked up H from school, after the big grins, there was a silence. H said "I really want to go to the beach, but it won't be the same without Daddy." No it won't, I agreed. He leaves such a big void, it hard not to step in it. You turn around and it is there. He makes everything fun, finds humor in everything. His mind is always working, it is hard to believe that it might not be working for him now. That he is not thinking ahead, trying to find his intro. We are here and he is there, and we miss him. It is good to be here, good to be away. It is raining and misty in the redwoods but we are all here together, playing games, kids piled up watching movies, cooking good food and enjoying each others company. I know this is where he would want us to be. We miss him, we are waiting. We are still on red alert...anytime now.

Strength, Integrity, and Societies way....

I finally decided it was time to take the girls to see a therapist. It is something that I have been thinking about for a long time. I spoke to their pediatrician and thought for a long time about how to introduce it. I decided first to see someone myself and see if it would help me to figure out the right time and way. I found someone that was recommended to me and went for several weeks. It was not the right fit. She was a lovely person, full of compassion and a good listener, but she didn't quite get me. She thought the way that I handled my children was "noble", she admired my strength. She believed that not everyone would have "strength" in this situation. I told her that I believed that was their failing not my strength. I believe that people have to buck up and take care of business. If they don't, I think it is selfish and self indulgent. I think when we have children we have a responsibility to them first and foremost. She thought there were people who just weren't capable. I believe they don't want to be capable. I believe that people can "do it" they just don't want to.I believe that this whole phenomenon in our society is a direct result of parents who think it is their job to raise "happy" children instead of raising responsible adults. We aren't always happy, we don't always get what we want, learn some coping skills and get over it. I understand this is not always a popular philosophy, but still one we have always subscribed to wholeheartedly. I tried to help her understand me and how I work, I encouraged her to come here and read what I have written to help her better understand me. She did not, and every time I was there I felt that I had to reinvent the wheel, just having to go over everything that had transpired the weeks before. A kind person, who had empathy for me, but did not understand me. I was reluctant to seek out a new one. It was exhausting to add another chore to my never ending list. D has been nudging me for sometime to give it another try. Earlier it was easy to be lulled into thinking that it could wait, but as time has gone on, and H has had more questions, I decided to give it another go. I called the pediatrician and got a list of names and started working from there. There was the usual few that don't return your calls, that don't treat children as young as mine, the ones that don't take your insurance, and those that have the strangest messages on their answering machines, that make you wonder how they ever get anyone to request a call back. I finally found one who would see the girls and fit the rest of my criteria. It was a bonus that she was also an art therapist. I thought this would work especially well for H. I had the first appointment by myself to make sure that this would work out. When I got to her office, I was nervous that it would be a repeat of the last time. We went into her sitting room, and she started by telling me that she had read almost all of what I had written on the blog. It was a relief that we had a frame of reference and I did not have to spend the entire visit explaining all that has happened. So far so good. The next words made my heart sink "I admire your strength", I thought "oh, no" she is going to tell me how not everyone could do it and it is going to be a repeat of the last time. I will spend all of my time trying to explain myself to someone. But her next words changed my mind. "I admire the commitment you have to maintain the integrity of the family and values that you and your husband created." Yes that is it. Exactly. Maintain whatever part of the structure of our family that I can. Maintain it for the security of my children, for their familiarity, their comfort, their well being. The girls had their first appointment this week, they went together and met in the art studio, they came out happy and chattering with framed self made art work under their arms. They want to go back. They liked her. They liked their studio time. This just might work..........

The Closer you get.......

The Closer You Get (Alabama)

The closer you get, the further I fall
I'll be over the edge now in no time at all
I'm fallin' faster and faster and faster with no time to stall
The closer you get, the further I fall

The things that you say to me
The look on your face
Brings out the man in me
Do I see a trace in your eyes of love

The closer you get, the further I fall
I'll be over the edge now in no time at all
I'm fallin' faster and faster and faster with no time to stall
The closer you get, the further I fall

Could I be dreamin'
Is this really real......

Yes it is REAL! I have in my hot little hand, a copy of the signed agreement to send him to Kentfield!!!!! It has been such a long time coming, a move much needed, for him, for us. The case manager for WC will be contacting Kentfield next week to arrange to have someone from the hospital come down and "meet" him. They will then go back and begin the preparations for his move. They are also arranging to do the CT scan on the way to the new facility so that it will be less confusing for him to be moved around. I am with him now, the girls with K this weekend. He is as always, physically maintaining. His eyes have been very bright, very open and we have spent the afternoon alone in the park. We frequently hear planes overhead and he often stops and cocks his head as if listening to them. I tell him about our life and all that is going on, he often murmers and make sounds appropriate to our conversation. I do not know what is going on in there. I do not know if we will ever have all of the answers that we seek, but we will keep seeking to give him the best opportunities possible. We are still waiting on so many things, so many unknowns. We are still waiting but at least we are waiting with intent. The closer you get.......

Still Waiting......

So we are supposedly getting closer to our move. I was told last week that we were expecting resolution by Friday or Monday at the latest. It was really good to hear that, but then I got home and had a message on my answering machine. This was from the WC Nurse Case manager, and she said she was sure I had already heard that he had been approved for a month at Kentfield but that they could not move him until the latter part of this week. She also went on to say that they were working with the hospital to make the arrangements and would also be arranging the CAT scan. ??????!!!!! Of course this was wonderful news! But I have become jaded by this process and was hesitant to throw myself into the decision, not knowing what else they were going to throw my way. I contacted my attorney and relayed the information that was left on my answering machine. I wanted him to give me confirmation of this decision before I started making plans. That was last Friday. Tomorrow marks a week. He has been trying to get that confirmation for me all week, and still they are dancing around the issue. Still they do not confirm these plans for me. Still they make us wait without a firm plan in place. The one thing that continues to give me hope for the move is Kentfield. They have been requesting his records, charts and tests. It makes me feel that they are preparing for his arrival. Everyone at the hospital in Redding are encouraging us, are hoping for his move. We can feel the tension in the air. Not a bad tension, just a tightness that lets you know something is going to snap soon. It is almost palpable. We are here, we are still waiting.