It sounds like life to me....

He had a pretty good week this week. A very full week. He sat up and held his head up for almost 30 minutes one day, and had his birthday on another. He got up in the standing frame, taking deep breaths and holding up his head. He spent alot of time looking around, and had many visitors this week. He is up to eating a whole yogurt in a sitting, and still seems to be making sounds in response to conversation. All in all, all things considered a pretty good week. MA and MB continue to alternate weekends here, so they can spend time with him and with the girls. MA was here this weekend, and continues to put him through his paces with stretching. Even though it was a good week, it is still hard to sit here in my chair and not be worried. Not be terrified. I want to hope and be hopeful, but still have to keep balance, for the girls and for myself. I have to keep things clear in my mind. I cannot allow myself to be lulled. I have spent some time recently talking to D about this. She calls herself my Devil's Advocate, and we have lively conversations that make me think. Help me to focus. I was feeling the burden of uncertainty earlier in the week. She was trying to help me to think of good things that were happening, but I was really focused on not being able to see what was out there for him, for us. I was telling her that it was the unknown that was killing me. If I knew it was going to take a long time but that we would get there, it would be much easier to settle in for the ride. If I knew that he would be there for H's graduation or to walk E down the aisle, I could so much easier accept the journey. It is the not knowing that wakes me up in the night. She looked at me and told me that the future is uncertain for all of us. That she no more knows if R is going to be there at M's graduation than I do. The difference is that I am asking myself those questions daily. Just because I am asking those questions, doesn't mean that I have any more control over it than they do. It really did make me think. I have spent so much energy on the anxiety of the unknown, but the truth is that not one of us knows what the future holds for us. We just have to get up, and keep showing up. I still have people commenting on my strength. And others still trying to give me permission to "fall apart". In any group of friends, who have been together as long we have, you have phrases, or mantras that mean something to you. One of ours is "there is no excuse for poor behavior". I still believe that. I believe that in the darkest and most challenging of times, that you show your character. I think that when you are raising children, how you deal with these times, forms their character. I believe that is black and white, not gray. It was interesting, after having this discussion with D, and others with K & A over the last week or so, I happen to get into the truck and a song came on the radio that pretty much summed that up for me.

The chorus from "It sounds like life to me" by Darryl Worley.

Sounds like life to me it ain’t no fantasy
It’s just a common case of everyday reality
Man I know it’s tough but you gotta suck it up
To hear you talk you’re caught up in some tragedy
It sounds like life to me

Sounds like life to me plain old destiny
Yeah the only thing for certain is uncertainty
You gotta hold on tight just enjoy the ride
Get used to all this unpredictability
Sounds like life.......

39 forever.....

39 forever, isn't that how the saying goes? Yesterday was his 39th birthday. The girls didn't know. We were home with our usual routine, but my mind was with him all day. I decided not to tell the girls, as I felt it would only make them sad. We celebrated his birthday with them at the BBQ after the triathlon. That was a good day, full of celebration, a party, cake, and laughter. They knew that it was a birthday and get well party for daddy. I wanted them to think of that day. I thought of the last 20 birthdays we have spent together beginning with his 19th birthday, just a couple weeks after we first met. I can still remember what I gave him, red licorice, mad magazine, liquid starch (for his ROTC uniforms) and a card. The first two would probably still be in his birthday package today, he gave up on starch and ironing years ago. His mother took a cake in for the nurses, and I understand they all sang "Happy Birthday" to him. D & R were there, and his aunt, and I understand a few other visitors stopped by as well. D told me that he said "Mom" to his mother, and made some other sounds, but was otherwise quiet. His birthday also marks the third month. Three months since our lives were irrevocably altered. Three months since I have heard that deep belly laugh, 3 months since I have seen the face splitting grin. Three months since I have lain down in my bed at night and felt a warm arm curl around me, and a whiskery cheek brush the back of my neck. Three months since I have gotten a 5 o'clock phone call to tell me he is on his way home from work (or that he is working late). Three months since I have been taking out the garbage, and have had to yell at him to turn off the alarm that he is sleeping through. Three months that I have been both mom and dad to the girls. He is 39 and it has only been three months but it seems like forever...

Quiet....

It has been another whirlwind weekend. We stayed with R & D again and children had the time of their lives. They had the most wonderful carefree weekend. They played outside , swam in the pool, went to the movies, and just good kid fun. My parents also came to see him this weekend. We had him and the kids and R&D all out in the park. He had some candy in his hands when the kids came, and that is the perfect ice breaker. They take it from him, and thank him, and dance around excited. They show it to him and run and play while calling out for us to watch him. E is getting more comfortable now, and will run and hug his arm. It is still H that I worry about. She is so smart, so contemplative. I see her smile and laugh and run with the other kids, but I also see the longing in her eyes, and the sadness that slumps her shoulders as she leans against him. She likes to sit on his lap and lay her head against his chest, pulling his arm around her little body. She closes her eyes and presses her cheek against the warmth of him. I am so proud of her, yet it rips my guts out to watch her, learning a strength and fortitude that no one her age should have to. This child sits there on the the lap of the man who loves her more than anyone else in this world. The man who has cherished her from the second he saw her, and I do not know if she will ever feel the strength of his arms tighten around her again. I do not know if he is hearing her sweet words, or fighting his way back to us. But in that quiet moment when her eyes are closed, I know that her heart is speaking to him. I just hope he is listening.

Another week come and gone....

Another week has come and gone. It has been another whirlwind of activity for all of us. The girls and I have finally had a complete week of routine. I think we are finding our groove. We have had a lot of help along the way. A has volunteered to pick up the girls for me on Tues. and Thurs. so that I can have enough time to make it home and get a few things done while I have the house to myself. Two other friends have offered to drive H to school on Friday morning (our early day), and get her to class for me, so that I can spend the morning at home with E. All of these things ease the stress of the week. A few extra minutes to think a thought all the way through, without being interrupted. To make a phone call, and not have to shush the background noise every five minutes. It is what enables me to carry on the rest of the time.

I have still been wrangling insurance, attorneys, doctors, paperwork and bureaucracy, but one other thing has eased my stress this week. The DSA brought me the first check from the benefit this week. I want to thank everyone again for your support. I cannot tell you enough what it means to us. With the big car repair, house insurance, property taxes, all in the horizon looming, it is so nice to know that we have a cushion, and do not have to stress about these things. We so appreciate every one's concern and continued support. Thank you.

He has had a busy week as well. He continues with his daily therapy and some days are better than others. He has had some odd temperature spikes over the last week and they have done every test imaginable trying to rule things out. Yesterday they even took him to the big hospital to do a CT scan and sonogram to make sure he had no blood clots or ulcers that were causing the random fever. It seems they can find nothing wrong. They seem to think is is the hamster wheel in his head spinning really fast. Lets hope so. I think it is about time those things started running. I heard that he said another "Hi" this week and has been enjoying his yogurt and pudding. The girls are looking forward to seeing him. They have been busy all week making pictures and cards for him. It hasn't gotten easier, but we are finding a way to make it more manageable. Another week, come and gone..

When it rains it pours....

It rained yesterday, actually it poured. Literally. I was glad to have had S here on Sunday and she helped me move some things into the barn. Just in time it seems. It smells like fall here today. Moist and wet leaves and damp earth. It is a distinct smell, something that can instantly take you back to your childhood. Our leaves are falling by the millions, they are everywhere. I have had some wonderful help of yard clean up offered to me, but I have asked them to wait a little longer until all these leaves are done falling. I have been raking piles and piles and it seems every time I turn around to admire my handiwork, there is a fresh carpet of them behind me in my wake. Rather frustrating but a metaphor for my life. More patience. More waiting. Try not to put the cart before the horse. Everything in due time. First things first. The leaves must fall before they can be raked.

The girls dressed out in full rain gear to go to school yesterday, and of course when we got to town, there was no rain. By the time school was over, jackets were stuffed in the backpack, and tights were abandoned in favor of barefeet. We were riding around in our borrowed rig (from his parents) as we blew a brake line Sunday morning. Luckily the girls were not with me, and MB and his parents came to rescue me. The big beast was towed away, and we are tooling around in Nana's rig. More rain. More patience.

I hear that he ate more yogurt yesterday. That he liked it and followed some commands. I heard that he participated more in PT, and was able to balance himself for a longer period of time while sitting. I also just word that he might be getting another Cranial Sacral treatment this week. We are also expecting some insurance/wc things to shake out over the next week or so. More rain. Rain is renewing, invigorating, the sign of change, and a new season. I look forward to dancing in the rain.

Welcome Rest..

This weekend I was welcomed. I was taken in, cared for, listened to, encouraged,and given a soft quiet place to lay my head. It was wonderful. S came up to stay with the girls at our house for the weekend. This was the girls first weekend at home since this began. It was good for them to have time in their own space. It was good for them to have time to play and enjoy their home. It was good for me to be able to leave and know they were happy and well cared for. It was good for all of us to have some time apart. I headed north for my usual visits with him, but this weekend I stayed with R & D. They have offered their home since the beginning, and I took them up on it. I needed it. It was quiet, and I slept in.They are amazing people, thoughtful and caring, both of them. R is his K. He has known him almost twice as long as I. And D, a person who cares for others, whole heartedly, thinks of all the little details, the things that apart seem small, but when put together make huge beautiful mosaic. When I came back to the house at night, we talked about the day, his day, the future, what is coming up, my worries, my fears, how long he has come, and how much longer there still is to go. It was good to go to bed with a mind emptied, a heart unburdened, and just sleep. This weekend I was welcomed, and it was wonderful. Thank you.

He continues to look fantastic. Like he could jump out of bed at any moment. Everyone comments on it. His color, his skin, even his muscle tone. He finally seems to be getting along with his milkshake and looks more relaxed. He has also had more reports of words. I try to keep my heart from jumping into my throat every time I hear about it. Two weeks ago D &T went to see him and told me that he had very clearly responded to them. They know how objective I try to remain, and assured me it was clear to them. I remain ever hopeful, but try to keep perspective. This last week I got several more reports. D & P both spoke to me and told me they were certain of his communication. When I got to the hospital on Friday, 3 nurses stopped to tell me that they had personally heard it, and that it was very clear to them. It is hard to look at him, and hear these reports, and not have your heart do a little flip flop. Has he sat up and spoken to me? No, he has not. He had times over the last two days that his eyes were particularly clear and focused. When I chatter to him he makes sounds in response. Soft murmuring sounds. Mm mm. MmmmHmm. Like quiet conversation. I took him outside and we spent almost 3 hours today in the park. It was beautiful and cool and we sat outside and finished our latest book. He was is his chair with his head tilted up to the warmth of the sun, I sat on the bench beside him with my head on his shoulder, and I could feel the rise and fall of his chest as I read. I could feel his cheek tilt down and his breath ruffle my hair as I read. It could have been any other day in our life, quietly reading, enjoying a cool fall day. It was a good day. It was a good weekend, a restful weekend.

We hit the ground running...

We hit the ground running this week, and it seems we have been running all week. We got home Monday evening to find our friends S & S had come up from Sac to do some projects at my house while we were away at the triathlon. It was a great surprise, and they worked so hard. We had school all week, and still have not had a "regular" week yet with Monday having been a holiday this week. I cannot believe that Friday is already here. It has been exhausting trying to find our rhythm. It takes us 40 minutes from our door to drive down the hill, find parking and make it to our kindergarten class room. So this makes it unrealistic to be able to come home while she is in school and then back again. Her school day is only 3.5 hours long, so I would spend over half of it in the car. E has school on Tues. and Thurs. and it is only 3 hours long and starts 45 minutes after H starts, so again not really enough time to leave, come back, find another parking space and then get her to class. We have been spending that time in the kindergarten classroom doing prep work for the teacher. E is fascinated by everything they are doing. I usually stand at the back counter while class is going on, E at my feet with her Dora "pack-pack" securely strapped on, peeking through the book shelf at the class. Her eyes follow their every move and she hardly makes a sound. She is engrossed in what they are doing. I thought she would be trying to get into everything, but that is not the case. The teacher has her entire attention. H is my happy go lucky people person (her dad) and E is a much tougher nut to crack (me) but she also already loves the kindergarten teacher, and vies with her sister to giver her hugs. I think she would move right in if we let her. S is coming back tomorrow afternoon and going to stay here for the weekend with the girls. It will be the first weekend they have been at home in quite a while. It will be good for them to have a quiet weekend. It will be good for all of us to have a quiet weekend. I am looking forward to seeing him. I just saw him Monday but it seems like such a long time ago. I have so much to tell him, I hope he has something to tell me too....