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...

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.

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......."

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......