Agony....

Eviscerated. Again. I keep wondering if it would be as painful if I saw it coming. They had been bouncing off the walls all evening. Playing games, chasing each other, seemingly happy. H had a great day at school, getting to celebrate her birthday with her classmates. She dressed herself from head to toe, ankle length floral sundress over a long sleeve tee shirt, rainbow striped tights and black glitter flats. I did not have the heart to have her change, as she was so excited about her day and had obviously put some thought into what she wanted to wear. To top her outfit off, she got to wear a paper crown all day at school. She was delighted. When I picked her up, she was happy, dancing. The good spirits continued through the evening, they even went to bed without incident or complaint. So that is why it took me by surprise. I was doing my usual evening picking up, when I walked by their room. I glanced in the door and saw H slumped on the floor clutching her bear, and quietly sobbing. I went to her and sank down in front of her and asked her what was wrong. She lifted her tear streaked face to me and said "mommy I miss him too much". She told me that she just wanted him to wake up right now. She missed hugging him when he came from work. She missed watching movies with him. She missed playing blocks with him. She missed wrestling with him. She missed going to the playground with him. She said that she made a wish on her cupcake at school today, that he would just wake up, and it didn't work. She said she just wanted him to get up and play with her and not just sit around in a wheelchair doing nothing. She said she draws him pictures to make him happy so he will wake up and we can be a family again. She said it is not the same without him, we are not the same family without him. She said she just wants him to hug her and hold her. She said she doesn't want him to give up. What could I say to my small daughter, just on the cusp of her 6th birthday? She has been amazing, she has done so well. I sat with my child and sobbed in her tiny arms. I just kept saying "I know" over and over again. Not knowing what else I could say that could possibly make any kind of a difference. Children by nature live in the moment, and here we have asked them to live in limbo for 8 months. We have given them no answers, nothing tangible, just hope. Hope is a difficult concept for adults to grasp, let alone children. Some have wanted to say things to them like "he will get better" , but I have refused. I will not lie to them. I will not have gone through months of this, only to have to start back at square one. They have to know how things are, they have to see where we are. Not to say that I do not make it as "pretty" as possible for them. They do not go in the hospital room, they only see him up in his chair, either outside or in the cafeteria. He is always, dressed, shaved, and has a little gift in his hands for them. That is as pretty as I can make it. But I won't lie to them. I hope, but I will not allow myself to throw myself into it, I do not have that luxury. I have them. I don't even hope for my husband, my partner or my friend. I only hope for their father. If they could have a small piece of that, it would be enough. If they could have that, I would give up everything else. As a parent, there is no greater pain, than watching your child suffer, and to be helpless to stop it. This is not a scraped knee or even a broken arm, this is so much worse. It is agony.

Just another manic monday...

It's just another manic Monday
I wish it was Sunday
'Cause that's my funday
My I don't have to runday
It's just another manic Monday...

D said that song was running thru her head today, and it is funny because it also has been running through mine. We went up to see him this weekend. I was meeting up with MAC on Sat to drop the girls, and on the way up, I heard a funny sound and pulled over twice on the way up to check the tires. I could not find anything, then once we got there I took a closer look and found a bubble on my rear tire. I knew better than to tempt my luck, so I just called AAA (Thank you R & D!) and he came out and changed my tire for me. He said he was surprised I hadn't lost the tire on the way up. A very close call. It was funny, S had been up in the week, helping me finish some projects at the house. We (she) got alot accomplished, and we celebrated her birthday before the girls and I headed north. As I was leaving her, I had an image of her in my rearview mirror looking at my tires, and it just stuck with me. When I heard the sound later, that image came back. It was a good thing. I was going to go to the tire store today and have them replaced, but it was manic Monday. We had our usual school, dropping orders at the post office, working in the classroom, swimming lessons and Costco kind of day. I think the whole week is going to be like that. H has decided that she wants to go back to dancing class, and no I do not need to add another thing to my schedule, but I do to hers. He would want that. Want them to be "doing". So dancing class tomorrow. The girls had a good visit with him yesterday. The weather cooperated and we got to take him outside to the park. The girls danced and played hide and seek and tag, and laughed and crawled all over him. E has decided to sit on his lap, she has come to it in her own time, and she is ready. She sits on his lap like a little royal princess sitting on her throne. She perches there and chatters to him in her tiny elmer fudd voice. It is a sight to behold. They love him so much, we love him so much. Then we come home to start another week. Another manic Monday...

Back in the Saddle again...

So here we are again, back in the saddle again. This ain't my first rodeo, I held my 8 seconds last time, we will see how we do this round. I contacted the director of the Kentfield facility, and was told he is still eligible for their program. It turns out they had only authorized the hospital payment for 1 week. This ain't the hospital's first rodeo with WC either it seems. They have danced before. It seems there has been a time or two where they have authorized a very short segment of time, only to have payment refused for continued care. Their position is that they have to have preauthorization for an adequate length of stay before they will go through the whole process of moving him. So what does all that mean? The ball is back in their court. They said they would send him to Kentfield, but time will tell if they were sincere in that intention or if they were just paying me lip service. It is all lined up. The bull is in the chute. It is their job to open the gate. If they do not authorize the stay, then I will know they have been stalling again. Again wasting his precious time, for their own money game. If that is the case, it will make me angry. Very angry. I hope that is not the case. Both the doctors at Kentfield and the doctors at their own suggested facility Sutter, agree on a very important point. He needs to be moved. NOW. He needs an aggressive course of treatment, and it needs to start now. It is the only way we will know what he might be capable of. We don't know what this time has cost him, what it is costing him as it ticks away. For now, we are back in the saddle again. Waiting for that chute to open......

Happy Valentine's Day..

In that still and settled place
There's nobody but you.
You're where I breathe my oxygen,
You're where I see my view.
And when the world feels full of noise,
My heart knows what to do.
It finds that still and settled place
and dances there with you.

I had planned on spending the day with him, but E got sick. We ran up yesterday so I could spend a few hours with him, and she could get cuddled by nana. We came home last night and when we got home, E tossed her cookies. It was fast and she went right to bed. This morning she woke up, fever broken and in good spirits. She was still sluggish and we had a quiet day. Then this evening she came to me and said her tummy hurt. I pulled her onto my lap, and she let out a loud burp. I asked her if she felt better now, and her eyes got huge and she opened her mouth to say something. However what came out was not words. All over her, all over me, 4 times in rapid succession. I cleaned us up, bundled her up, and tucked her in for the night. Of course the other one, the one who has his energy, and never gets sick, she was fine. Bouncing off the walls fine. Finally got her off to bed. Happy Valentine's Day.

Snafu....

I think I must have been a serial killer in a previous life. It is the only thing that I can think of. Who else has this kind of luck? We have run into a snafu. So after months of dragging their feet, failing to respond, and throwing wrenches into my carefully laid plans, WC finally gets proactive and tells the hospital to start making plans for his transfer. So the hospital calls Kentfield and tries to start the paperwork, and Kentfield tells them he is not eligible to be admitted at this time. I went through this the first time, when I originally made the plans back in October to have him moved. I called the head of the department and spoke to the CFO to get the facts. At that time, they told me that they could not admit him with WC pending, they had to have written guarantee of payment. Today, after I got that news I got back on the phone over there and started the process of untangling this mess to see what the status really is. It is probably going to take a few days to shake it all out and see what we are left with. Of course. The icing on the cake of course is that WC, the same people who have drug this whole thing out for months, heard that Kentfield said he was not eligible and immediately responded with " Oh, we heard he can't get in, so can we start making arrangements to transfer him to our choice in facility" Yeah. Right. Not even close. Tomorrow I will be fielding phone calls in between school valentine celebrating. One more day in the life. One more thing. Another wrench. Another snafu...

FINALLY!!!!!

It is Christmas? No. My birthday? Nope.Did I win the Lottery? Nada. What could be better than that? The phone call I got today! They have agreed to send him to Kentfield!!!!!! The full evaluation process at Kentfield is 8 weeks for the Coma Stim program. They have only authorized 2 weeks, but that is 2 weeks more that we had last week! They agreed to move forward and initiate the process. What does this mean? Paperwork will be shuffling back and forth between the hospital where he is and the doctors at Kentfield. Kentfield will send a representative to meet and evaluate his needs, and they will go back to Kentfield and prepare for his move. They will then organize transport with the hospital where he is, and he will be on his way. We will go over with him, see him settled. And we will wait. We will wait and see what they can tell us. They will try to give us a better idea of where he is and what we can expect. Keep your fingers crossed. This is it. His big shot. If he has something to tell us, this is where they will help him find his voice. If he does not, then we need to know that too. The end of limbo. Purgatory. Answers. Questions. Relief. Expectations. Peace. Information. Rest. Finally.

A Shell Game...

It is a shell game. It feels that way sometimes. I am here trying to get through each and every day. We have a busy schedule, some is unavoidable, but some is self imposed. Self imposed because I have to fill the days and the hours both for the girls and for myself. So we keep busy. We keep moving, I find things to keep the girls busy during the week, and try to find things to keep my mind busy. I know it is a big shell game. We all know the ball is hidden there but we keep moving those shells around and around to keep us distracted. Then something will happen to rock my boat. It can come from the oddest place. Something can hit a chord, something from television, something someone says. It is then that I realize how tenuous it all really is. How everything is just below the surface. I was watching a show the other evening where someone was commenting to the husband that his wife was very strong and did he ever find that threatening. He responded by telling the other person that he was her husband, and it was his job to make her feel safe. That she had taken care of herself since she was young, and that it made her feel safe to organize and control her environment, including him. That as her husband it was his job to make her feel safe, and that he loved her and he could give her that. He has always been that husband. He has always understood me, and has never been threatened by it. So I sat in my living room, watching this show, with tears running down my face, and sobbing, just sobbing. I had been moving those shells back and forth, and all around, knowing that ball was under there somewhere, but not knowing when I would uncover it. And there on the couch long after the girls were in bed, it appeared. I know it is there, hidden from sight, and things keep moving and shifting, but sooner or later it will be revealed. It is all about odds.