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.