Have you ever caught a leperchaun?

Every year we make traps to try to catch a leprechaun. He threw himself into this endeavor more than Christmas. He and the girls would have a special evening and make all kinds of traps from simple to elaborate in hopes of catching a leprechaun. They would carefully make the traps and set them all around the house. They would range from an oatmeal can with a set of Lego stairs, to a carefully set up jail that he constructed. They would place something shiny in the trap to entice the leprechaun. The "jail" was a box that he cut windows in and carefully bent wire through to form little bars for the windows. The most elaborate one was a snare trap made from a plastic parachute from one of those army parachute guys that you throw up in the air. He had it rigged to some sort of pulley system attached to the door of the guest bedroom. If you opened the door it would spring the trap and it would rise up to hang from the door frame. His imagination has known no bounds. The hope of course is to catch a leprechaun so he can lead you to his pot of gold. The leprechauns are know around our house for playing naughty tricks on us. They have put green food coloring in our hair while we are sleeping, they have covered us with shamrock stickers, they have tinted the milk and the toilet water green, they sometimes make messes around the house, they have been known to bring us Lucky Charms and then dump them out on the dining room table to make a big mess. The girls are always delighted to see what terrifically naughty things they decide to do from year to year. This year was a different year. S had come to our house to visit us for a few days, and then took the girls back home with her for a few days since they were on spring break. St. Patrick's Day fell during the time that she had them with her. Before I left, I handed over my back of props that I had been collecting; chocolate coins (to put in the sprung traps), green glasses and headbands, lucky charms etc. I knew that she would be able to pull off this little feat as she never does anything in a small way. Sure enough, they were busy making their traps when H had a little meltdown. She was so upset, not being able to remember how Daddy had made them, she wanted them to be just like Daddy's and she was afraid that she had forgotten. S has a way with her and was able to talk to her, and calm her and go on to finish and enjoy the rest of the experience. They were very excited when they returned to tell me all about their adventures, and how they were not successful. H also told me about her meltdown and how she just wanted it to be exactly like the way that Daddy did it, and how she didn't ever want to forget. I held her and reassured her that Daddy would want her to make new traps, and keep improving on the old ones. I told her that Daddy would want her to try new things and to keep trying to outsmart those naughty leprechauns. She processed all of this, and seemed to accept it. We have to keep trying, to be one step ahead, keep moving forward. Just like chasing leprechauns.

The Cost...

The cost. You know that is what it all boils down to. You know that is what they are worried about, what they are trying to mitigate. But there are other costs involved. Costs that are much more valuable than dollars. I often wonder what this time has cost him. If it has cost him time with us, if it has cost him recovery time. Or perhaps it has cost him nothing. There might not be anything left to be done. But those are things that I cannot know without the tests and proper care. I cannot make decisions about the rest of his life without knowing the cost. There are costs I do know. Costs that I can see. I don't know what this time that has been wasted has cost him, but I do know what it has cost us. It has strained the family to the very seams. It has kept everyone in an exaggerated state of tension for such a long time. It has forced us all to watch him, looking for every little sign, with no proof to back them up. I know what it has cost my children to stay in this limbo. I know what it has cost them to live for months without their father, neither being able to grieve or be encouraged. I know what it has cost them. It has cost them their innocence and carefree attitudes. That is a high price. I do not know who thinks they have the right to make these decisions for my family, but I resent it. I do not know if anything will or would have made a difference. I do not know if this time has cost him anything or everything. I know that he deserves the right to find out. That we all deserve that right. That my girls have the right to be given a future. Nothing is certain in this life, we all know that now. But there is security in safety and predictability for all us, but especially for children. They deserve to at least have that. The deserve the right to prepare for their future. The deserve the right to grieve or encourage and to know the time for each. It has cost alot, and the tally keeps going higher and higher as each hour passes. It is a travesty. It is unfathomable and unforgivable. It is a price that should not have been paid. It is a cost too great for small children to bear. They have already paid so much.

Still here, still waiting...

It is Monday morning and we returned last night from another visit with him. The girls had an incredible weekend, full of fun. They went skiing with MAC on Friday since they were out of school. They have picked right up where he left off with them last year. They both ski on their own, no bunny hills for these girls! They ride the lift up and ski down. Both are just like him and love it. They love the snow, the skiing and riding the lift (or swing as they called it). I am so thankful that this is a passion that MAC shares with him, and in fact had spent many days with him and the girls on the mountain. Saturday brought more snow fun, when R & D took them all snow mobiling. They all took turns racing around the meadow and both girls came back with smiles, and a love for a new snow sport. I spent some time at home on Friday getting my house back in order after the previous weeks marathon cupcake baking sessions, the birthday festivities and the random house projects and organizing that I cannot seem to stop no matter how busy I am. I am sure it is some sort of coping mechanism. Then I headed up to see him. I was met at the hospital with more stories of his antics. I was told that he had lifted his leg on command several times in the presence of several people. I was told that he had stuck his tongue out for another nurse. She asked him to do it then, and my heart sunk to my knees when I saw him open his mouth and thrust his tongue out just beyond his teeth. It seems too coincidental that these things keep happening. I know that there would be a certain element of chance, but then isn't there also the possibility that he is doing it intentionally? It is so hard to know, so confusing. And so still we sit, still here, still waiting....

Happy Birthday to Her.....

Saturday was her 6th birthday, and it was celebrated with much fanfare. After our rough previous week, she started to get excited about her big day. On Thursday she got to celebrate with her class, and we made cupcakes with sprinkles, her favorite, and butterfly gift bags for the class. Friday was her big reading recital, and all of the parents went to the class and sat with their children and had their child read to them. E and I went and listened to H read all of her letterbooks that she has been working on all year. I spend hours there helping, and I was still amazed at how much they had produced, and how well they all did. What she wanted most for her birthday was to spend it with her daddy. We came home on Friday to bake another round of cupcakes so we could take them with us to see him. Saturday she was up bright and early, and delighted to find presents, balloons and a banner to greet her at the breakfast table. We gathered our things and headed north. We were blessed with a beautiful sunny day, and were able to have our little party outside. When we got there MB had already brought him the park area. He was waiting with gifts for his big girl. She was happy to open her presents, visit with her dad, play in the sunshine and then decorate cupcakes there on the picnic table. She was happy and excited. We got home that night to bake another round of cupcakes to take with us to her party on Sunday. On Sunday we had our big party at the skating rink. It was her 3rd birthday that we have celebrated there. They were wonderful to us. Are always wonderful, but exceptionally so this year. Went out of their way to make sure we had what we needed and took care of all of the details. (thank you D!) She had a great time. Her class was there with their families, all of our close family and friends, and she was the queen of her own ball. She even received a set of Cinderella's glass slippers for her birthday! After such lows the week before, I was just so glad to see her so happy. To see that she enjoyed herself so much. She is an amazing little person, and I am so proud of her. We came home that night to unpack her bounty, take some time to unwind and yes you guessed it, bake another batch of cupcakes. This time for Dr. Seuss' birthday celebration at school. On Tuesday I cooked and read green eggs and ham four times in classroom stations. It has been another busy week. Alot of work, but worth every minute to see her so happy. Happy and distracted. Happy Birthday to Her....

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......