A season of change....

To everything there is a season...... (The Byrds)

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!

Even though it is a little before my time, I have always liked that song. It is just the kind of thing that sticks in your head and you find yourself humming it to yourself in the car. Or maybe that is just me. It is a season of change. The leaves are falling (again and still!) The evenings are cooling off and the mornings are crisper. We have hit the four month mark. It has really creeped up on me. I was talking on the the phone to S the other day and she said something about 4 months having passed, and I told her it was not 4 months yet, then there was a pause as we both counted back and she gently confirmed that it had been just over 4 months. Four seems so much greater than three. Three seems like a blip, four feels like an eternity. Four months is a whole season of the year. We have gone to summer into fall. It is a season of change. We still do not know any more than we did before. We are still waiting. Waiting on him, the mercy of the system, for a miracle. The one thing that we do know, is that it is time for him to move. His body remains stable and the random reports of responses still come in. It has become clear however, that he has gone as far as he can go where he is. He needs new stimulation, different therapy if he is to have the best chances. The have brought his body from the fragile state it was in, to where he is now, but they can go no further. They do not have the programs and training for what he needs now. He needs a brain injury program, one with more mental stimulation and exercises. I am investigating the possibilities and speaking with the directors of two facilities in California. Neither is close. It will be hard. But we have all nurtured his body and his spirit, it is now time for him to be in a place where they can give him those things that we cannot. He needs to go to school. Like any parent sending their child away to school, we know that we cannot do this for him. This is the part that he has to do, and he has to be in the right environment to do it. With the best tools at his disposal. If it were all in my control he would be there now, he is ready, but of course this is another exercise in patience as we wait for the stars to align and the system to work it's process. One thing I know for certain, to everything there is a season. This is a season of change.

Butterfly of the Week!

It seems like an innocuous statement, but that is some powerful mojo in our house. Butterfly of the week is a cross between being a rock star, having your birthday for a whole week and being a princess. You get to bring special snack, share everyday, have your parents come in and talk about work or hobbies, be the teachers helper, and many other equally high ranking duties. The exciting buzz through the household is palpable. Even the title holds mystical powers. When it was time to leave R&D's from the weekend, I was met with the usual moans and groans about not wanting to leave their cousin. However, this time I merely had to dangle the magic words "Butterfly of the Week" and the children were magically seated in their seats. When we got home jammies were willingly and happily donned. Teeth were brushed, and smiling children toddled off to bed. That is some good magic, powerful magic. It was so lovely and stress free coming home tonight, that if the rest of the week goes as well as tonight, I might just start issuing my own titles to see if I can hold onto it a little longer. I will even hand out tiaras, I mean I am not above a little bribery. Okay I might even relish it a little. We have always been a little bit fond of pitting the children against one another for our own personal entertainment. Oh nothing physical or permanently damaging, just a little competitive incentive. That never hurt anyone, right? Our motto has always been, we brought them into this world, we feed them,clothe them, and house them, the least they can do is provide us with a little entertainment. We have spent many an evening laughing over the heads of the children as we watch their vexed little faces as they compete to out do one another. It is just one more thing that I miss. In the midst of the chaos, I miss being able to share that little humor with their father, my partner. I miss being able to shoot a knowing look over their little heads, and know that we are both on the same page or remembering the same memory. I miss giving them the stern face lecture, and then looking at him with a secret smile because we both actually thought what they did was funny. I just miss him. I am watching our little butterfly spread her wings, and I think that he deserves to be here to watch it for himself.....

It's my Potty and I'll cry if I want to....

Yesterday was a day. We have been in the battle of the wills or potty training for some time. We had gone through most of the normal tricks, when he came up with a brilliant idea. I was getting frustrated being the primary "hounder" trying to remind E to use the potty. He took E to the store and let her pick out her own pink potty. He then decided to bribe H to take on the "hounding" job. It was genius really. Using the greed of one to help train the other. He has always had a very good insight to human nature.If she could get her sister to go, then they would both get a treat. It was working really well before all of this happened. Since June it has been an up and down roller coaster. She knows how to go. I told her that she cannot go to school (which she loves) if she goes in her pants, and she has held it really well, until yesterday. I spoke to the pediatrician, and he reminded me that it was her form of control in her world where there are so many things that are out of her control. I know what that feels like. The loss of control, the desperate grasping at things you think you can control. It doesn't mean that it went any easier for me yesterday. As a matter of fact it was a complete disaster. It was picture day in preschool, I was driving for the kindergarten field trip to the pumpkin patch for the other one. We got to the school and E had an accident, then tried to hide it. My frustration was already at it's breaking point, and I had no time to have a patient discussion on the merits of using the potty. I could feel the emotions, the pain, the frustration, the anger, the panic, the feelings of defeat and inadequacy, wash over me. I wanted to scream, I wanted to yell, I wanted to cry right along with her. I wanted to curl up into a ball in the middle of the preschool play yard and just sob. Luckily A was there, she told me she would take care of it. She told me to go with H on her field trip. I left her there with my screaming child, and I went to be with the other one. I worried about her the whole time. As I watched H running around, or felt her arms wrap around me as she launched herself at me, I knew that I had made the right decision, but I still worried. When we finished the field trip and got to pick up E, she was happily playing and running around. She had missed her school photos. I was wiped out. I could not think of running errands or going to the store. We came straight home. They ran around and played, me all the time praying for bedtime so I could just....be. Be quiet, be still, be alone. When it finally came, I collapsed. Emotionally spent. This motherhood stuff, it isn't for sissies, and doing it solo...... "It's my potty and I'll cry if I want to"....or perhaps "Oh my mama told me, There will be days like this ... my mama told me."

He'd do it for me...

He'd do it for me. That is a statement I have been hearing alot lately. So many people have offered their help, their support, their time, their resources, and when I thank them, I get a shrug and "he'd do it for me." I cannot even say how many times I have heard that over the last few months. It is his living legacy to us. It sets the bar so high, it is the example he has set for our daughters to witness. It is what comforts me, what keeps me going every day.It would be so much harder to get up each and every day and not have these constant reminders of what we are fighting for. I spent a quiet weekend with him. We had all of Sunday together, just the two of us. Nothing new and miraculous happened, but we had quiet time, it was good. We read,we watched movies, went outside, and held hands. It was while I was sitting with him watching a movie, that I saw a note taped above his bed. It was a hand written note on a simple paper towel. It wished him luck, and said their prayers were with him. It was signed, with a footnote saying "from a friend you never knew". It was from someone in Chico that went all the way up to see him, someone who was not a part of our everyday lives, someone who he met casually, but someone who thought enough of him after those casual interactions to see him and leave that note. That is the man that I married, the father of my children, the man that I am fighting for right now. And I know he'd do it for me.....

20 years ago last month.....

I can't believe it has already been 20 years since this photo was taken. I can still remember this day, what we were doing, where we where and who we were with. If 20 years can pass so quickly, 3 months should seem like the blink of an eye. Three months is the first trimester of a pregnancy, a single season of the year. Such a small piece in the whole picture of our life. I see this picture and I think of our youth, our innocence, and of the children that were not yet a twinkle in his eye. So much we did not know then, so many things we do not know now. Some things change and others stay the same....

Huff and Puff.........

And then the wind blows, and it sure did. It stormed and rained and gusted around us, but we stayed snug in our home. We have leaves and acorns down everywhere and a few small branches but nothing major. Our power was out for awhile yesterday, but it was back on by the time we came home from town. We were not so lucky with the internet. We have satelitte here (the only high speed available to us) and when the weather is bad, no internet. It is thankfully back now. Our swing in the yard did a back flip about 10 feet away but seems to be otherwise unscathed. Our market umbrella, jumped out of it's stand and was upside down in the pool, also undamaged. He had a good week. He did some new and surprising things. He raised his legs on command. Several times. They were surprised and took him to physical therapy right away to take advantage of his participation. He repeated it for PT and they got him to a mat and turned him to his side and asked him to roll himself back to the center. He did. More than once. The ground here is damp, it smells like fall, and freshly fallen pine needles. We weathered the storm. I hope this is a harbinger of what is to come. Staying the course and weathering the storm.

Patience....Again....

It is time to start thinking about decisions. My emotions have been up and down and all over the place. Some days I get so bogged down with what he is not doing that I cannot think of what he is doing. R&D have been my best reminders of this, as I start to feel the weight of the future pressing down on me. They remind me that it has only been 3 months though it seems like an eternity. They also remind me that it has just been 2 months since he has transferred to where he is, and of the condition that he was in when he got there. It is true. Those are big changes. I was reminded again of this on Friday when I was in the pediatrition's office. He asked how he was doing, as people often do. I started to tell him much the same, as "I" often do, then I remembered that the last time the Dr. had seen him was when he was still here at Enloe. I thought of that day when he came in, as I can still see it clearly in my mind. I thought of that roto-bed that he was strpped to, the vent, the tubes, the pic line, the complete stillness of his frame as he lay there in the bed. I stopped myself, and said "well, actually there have been changes" and I told him about the progresses, and the changes he has made. I watched the surprise wash over the Dr.'s face, and he told me that when he had seen us there in the ICU, he never thought he would have gotten a report like that, that we would have made it this far, and to not give up HOPE. It made me remember back to the day that they told me that he would not survive the week, or after that when they said that it would take 3-4 weeks for him to be able to recover from a lung infection, if he was able to recover at all. Three days later it was all but gone. I still do not know what the future holds or where we are headed. I do know that I have to "keep my eye on the prize" which is what I keep reminding him to do. I have to work towards that goal, and not be sidetracked by the events of the day. This is not going to be a sprint, we signed on for the marathon. Of course this is what D has been reminding me of in our "intense fellowship" sessions, but I was reluctanct to accept. I think that I am still learning my lesson about patience. I tend to think "Okay, I accept it...now let's move on to the next thing." Of course that is not what patience is about. Patience for me right now is not about accepting what "is" but about accepting what I do not know and still moving forward. A lesson I am still learning. The kids had a wonderful visit with him on Saturday. He was good. Holding himself up and looking around, watching them. They ran in circles around him, laughing, playing chase, calling out to him. Of course H spent her time on his lap, curled up against her dad, feeling his arms around her. In the time of this uncertainty, in the chaos of the moment, I see this time, her ability to draw strength from him. I see how the rest of the week passes more easily, how she leaves her visits with him, on a high note, more contented. I realize that as difficult as this all is on the rest of us, I would not trade that moment for her. If I get frustrated with the slow progress, I realize that if things had turned out differently, she would not have these moments. If he had not made the progresses that he has made, these moments would not be possible. For that I am grateful. For that I will be patient. Some people don't get that. Some people would give everything to have it. One more hug, to listen to a heart beating under their cheek, to feel a breath rustling their hair. I watch my daughter absorb it, and I realize, now is not the time to know. I am still learning patience, I am still learning to appreciate this moment, to live in this moment.

Busy Week..

It has been a busy week. A crazy week. Of course Monday is always our long day. I come home and frantically try to catch up on my orders, messages and e-mails. We have school for H, I helped in her classroom, then after school we rush over to swimming lessons. We then head over to Costco or the grocery store to pick up whatever groceries we need for the week and head home for quick dinner before bath and bed. Tuesday both girls have school, H starts 45 minutes before E, so after we check H into her class, E and I usually do prep work for the teacher until it is time for E to start. I check E into her class and am off to run errands. On Wednesday we took H to school and then headed out for an appointment at the SS office. Thursday was the same as Tuesday but it was E's first field trip with her class and we went to the Pumpkin Patch, then back to school to pick up H. Friday is early day with H having to be in class at 9 am, which means of course we have to wake up grumpy E. I have been fortunate in the last weeks to have A pick up the girls for me after school on Tues and Thurs so I could run home and get some things done, however she was out of town this week so we were on our own. I have also been fortunate that H has been able to ride to school on Friday with a friend, and I have been able to let E sleep in and have a quiet morning. None of those things worked out this week so it was just me and the girls and our busy schedule. You add in 3 trips to the post office to ship orders, the packing and processing of the orders, my evening yard clean up (trying to top off the dumpster before it got picked up today, packing lunches, making breakfast and dinner, the laundry, the shopping, the paperwork, getting documentation together for SS, doctors and dentist appointments, talking to lawyers,making Halloween costumes and all of the other things that keep us moving. It has been a busy week. MA is down for the weekend, and came to pick up the girls for me, to give me this evening to get caught up, before the next week starts and I am behind again. It is so funny that I thought my life was busy before. I thought I didn't have much time for myself or enough hours in the day to get everything done that I had to do. Of course I would be thrilled with those days now.

Everything for moment....

We are still in our holding pattern. He is about the same. He still does things randomly but nothing really consistently. I had two people tell me that they saw him laugh. They said he was by the nurses station when they were telling funny stories and that he laughed. They were very excited, and I believe that they believe it. He is still eating, and yogurt seems to be his favorite. He is eating a half to full container per sitting. There are still other reports of random words, Hi, Mom, Yeah, No, Mmm Hmm. It is so hard to watch him and wonder what is going on in there. We all do range of motion exercises with him, and talk to him and try to show him things to peak his interest. Since he has not been able to use his hands, they get very dry. I have been putting lotion on them, I take his hand in mine and massage the lotion into his hand and arm from fingertip to elbow. His hands have never been large, but they have always been broad and rough. Over the last three months, I have felt them get smoother and smoother, it is amazing how fast those calluses will go away without use. I remember the strength that I have always felt in those hands. The gentle way they held our children. The rough feel of his palm against mine. I miss their strength. I am not the only one. It has gotten easier for the girls to see him. They know what to expect, and I have mixed feelings about that. One one hand I am amazed and proud of their resilience. On the other hand I am profoundly saddened that they have to be. In the beginning I watched H in her almost desperate attempts to get him to look at her. Now it makes me ache for her, to watch her resignation. She still wants to see him, wants to crawl in his lap and just rest her head against his chest. She likes me to hold his arm around her little body while she curls up against him, squeezes her eyes shut and presses her cheek against his chest. I can feel her trying to absorb the moment. There is nothing in this world I would not give to have him be able to hug her back. In that moment, for that moment, I would give anything, everything.

We got home last night to the crisp clean smell of fall. It was cool, and we could feel the acorns crunching under our feet as we unloaded the car. The leaves are turning, and fluttering from the trees, but they are not on my roof or in my gutters. They are not on the front porch or the back deck. They are filling that dumpster in the front yard. 40 yards full of leaves, all gathered and loaded by a wonderful group of people. I don't even know exactly who they were. I know a few, but the rest I do not. They repaired the roof on my pumphouse, cleared a path for me to get to it easily. They pruned the trees, blew the leaves off of my roof and gutters, and cleared over 40 yards of leaves. But the best thing in the eyes of my two little girls, were the two fat, round pumpkins left on the front porch. They were so excited to see them, they ran up and patted them, moved them around, and decided which one belonged to which girl. We came in the house, and they wanted to decorate for Halloween. They layered leaves on the buffet, and made trailing paths of candy corn. They drew pictures of pumpkins and leaves and hung them on the fridge. H said "Mommy, it was so nice of Daddy's friends to bring us pumpkins!" Yes it was. Thank you. You made one big girl and two little girls smile today, and that is no small thing.

The Gift...

I was home alone this afternoon when it was delivered. It is not your usual sort of gift. Perhaps some people might not call it a gift, but I do. Then again, I have always been more the "paint my house" kind of girl, rather than the candy and flowers kind of girl. It is sitting in the yard in front of my house tonight, huge, bigger than my truck. Actually it is only part of the gift. The rest is coming tomorrow when I am not home. What is it? Bigger than a bread box.......Smaller than my house, that is alot of ground to cover........it is .......a dumpster.....a 40yd dumpster to be precise. I imagine that not everyone would be this excited to have a huge garbage can sitting in their front yard, but I am. The other part of the gift arrives tomorrow. While I am visiting with him, and talking about our week, the girls will be visiting the pumpkin patch with their aunties, and here at the house something wonderful will be happening. A group of amazing people have volunteered to spend their day off, helping me get ready for winter. They are coming to clear the brush to the pump house, and dig me out of the huge piles of leaves I feel buried in. It is a daunting task for one person to look out at and even know where to start. A clean slate. A fresh start. It will be nice to come home and not have the weight of all that I have to do looming at me the second I pull in the driveway. I so appreciate this. The gift of all of these people's time, efforts and energy. Amazing. I cannot wait to tell him about it tomorrow, I know he will be proud, and humbled. This one ranks up there as one of the best gifts I have ever received. I can only think of one thing that I would like more, hopefully he is working on that one......

Navigating a sea of uncertainty....

I have been thinking alot about the uncertainty of life, and am trying to accept the things that I cannot know or change right now. It does not help that I feel like I have a giant glow in the dark, karmic bulls eye on my head. Delegate, delegate, delegate, everyone tells you. The problem with that theory, is that it is just that to everyone else. Theory. It IS my life, the lives of my children and the husband who is relying on me to make the right decisions for him. I got an attorney to handle those things for me, hoping that would be a part of all of this that I would not have to worry about each day, but still I have to monitor and police those activities or things start to slide. I cannot afford to let those things slide, we are on borrowed time as it is, one thing dependant upon another. I have entrusted other professionals to give me advice and guide me down the right path, and one thing became abundantly clear. I am alone in this. I have to be my constant advocate. I have to ask the right questions, even when I do not know what they are. When I do ask the questions, they do not know the answers, say they will get back to me and then do not. People want to help, but without being in this position, they have no idea of the enormity of this weight. Oh I am sure they go home at night and feel badly for us, maybe even pray or hope things turn around, but then they go about their day, their lives, and their jobs. We do not have that luxury. Our entire lives hang in the balance, and I am at the mercy of others. It is a very uncomfortable place to be. There is no manual for this situation. No one handed me a syllabus. I fear more what I do not know, rather than what I do know.