that no matter how much I want things to be different for them that there are things we can't change for them. We can provide them all the opportunities to make progress but nothing is guaranteed to work and all you can do is keep trying. Some times it is very hard to keep trying when it feels like nothing makes a difference and no one that can help takes what you are saying seriously. I worry for their future and wonder how things could be different for them if our concerns were addressed before they got escalated to the point of crisis. Thank you to My family and friends for being there for us, checking in to see how we all are doing and just being there to listen if nothing else. I know this journey would be even harder with out you.
Thursday, November 29, 2012
8 years ago we brought home two kids we thought we could love through anything they needed and as long as we were determined we could fix anything that came up. Over the course of the next 4 years we added their two younger siblings to our home and had faith that doing the right thing would allow them to all be together and we could help them all grow up. In the last year I have come to realize
Wednesday, November 7, 2012
We told the kids that Daddy had something in his head that shouldn't be there. That the Dr's were going to take it out and that Daddy would be in the hospital for a few days. They all took it pretty well. I am not sure how much they really understood. However Liam got it. He processed it and then he came and sat next to Jason's chair at his feet and leaned on his legs. He never spoke. I saw him and said you can sit with Dad if you want. He climbed in his laps and I took this picture. It speaks to Liam's concern for his Dad and their ability to communicate with out words. It amazes me still to see this picture.
Jason continued to work for awhile. It was hard for me to let him but I knew he needed that norm to deal with everything. He worked and came home exhausted. It was so hard to not be able to fix it for him. No pill I could give him to make it go away nothing I could do to make it better
I had to do something for him and nothing seemed like it was enough. I came up with starting a facebook page for him to see the support he had as well as an easy way to share the latest news with everyone. Supporting Jason French Then I had a fun visual idea for him to see. I took a blank wall in our living room and made it is support wall. I cut out vinyl letters that say Feel the Love Jason I printed out every comment anyone posted to him, anything that I came across that made me think of him, every card that arrived got stuck to the wall. It was humbling to him to see how many people care. He has always been the one to be there for others. He has always been the one doing things to help and it was hard to step back and let people do it for him.
|The love poured in and we hung it on the wall for him to see and feel|
Jason volunteers with Animalia animal group and they were having a show at the Children's museum. He insisted he wanted to volunteer so we all went down and he helped with the show. I saw that day how hard he was working to try and maintain his day to day norm. I could see him struggle with his balance and his coordination wasn't what he thought it should be. He loved being with the animals and the kids. I sat and watched him amazed at his strength and determination. He was however completely exhausted by the end of the event and thankfully his Dad had joined us for the event and was able to drive us home as I was a nervous wreck. It was such a turning point to see how much he was being effected even when he thought he was compensating. He told me on the walk back to the car it was to like to walk across open spaces. It felt like the ground moved and he did ok if he could touch a wall but crossing parking lots didn't allow for that. Little did I know how quickly things would change for him over the next few weeks as we waited for his surgery date. I started driving him to work and picking him up after this. I wanted to make sure he arrived safe and sound. He didn't like the idea but understood why I wanted him not to drive. It was a little hectic getting everyone where they needed to be on time but it was worth it. Little did I know how short of time it would be before he wouldn't need me to drive him.
We finally got in to see Dr. Sloan and as soon as we met him we knew that he was the one we wanted to do the surgery. He personally walked out the waiting room and met us and walked us to a room. He asked some questions and did some tests. It made me want to cry when he struggled with some of them. He has always been my rock and my strength and to see how much he struggled was horrible. I know it had to be so hard for him to feel vulnerable like that. To not be able to do things we all took for granted. Dr Sloan said he wanted him to get an abdomen scan because this hemangioblastoma can be part of a condition called Von Hipple Lindau syndrome, and he wanted to make sure his kidneys didn't have the cysts. We set up a date for surgery and the scan and left with a plan and confidence we were doing the right thing. I still had couldn't believe we now had brain surgery scheduled for my husband but I understood this is what he needed to get back to himself. It wouldn't be easy waiting till the 25th from the 9th but we knew we were making the right decision. I told him several times through this that we would do this together and together was exactly where I was going to be.