Events from September to March

The last two posts were updates from my BBC group. I started writing them here but never finished and published them.

I found out some time in September that Jared would be on a waiting list for the AAPD program. I also found out that if he were in a nursing home he would not have to wait. He would have to be in a nursing home for 30 days for the AAPD program to kick in.

I discussed this with Jared's family and we all agreed this was the best option to get more help, fast.

When Jared weaned off Dilantin he improved. With that improvement it was even more difficult to care for Jared on my own. He was falling out of bed, getting more aggressive, and getting into to more things (like eating sidewalk chalk).

All of this took a toll on me. Since the accident my sleep schedule was nearly non existent. I was always tired but never able to sleep more than a few hours at a time. I was a nervous wreck worrying about everything that could go wrong, and had gone wrong.

Financially things were coming to a head. I was barely making it with bills, food, and gas. If I needed something like a new tire or a new appliance I was going to be up creek.

I thought the break would be nice. It would be a good trial if I ever had to admit Jared for long term care in the future.

I had a big problem finding a nursing home that would even consider admitting Jared. Out of the five local nursing homes only one agreed to admit him. Most of them claimed they geriatric patients and Jared would have no one to socialize with. Obviously. Eventually I told them that there wasn't a place full of young disabled people, even if there had been it wouldn't be close to home so his family could visit. Having family and friends visit was much more important to me than having him in a facility with people his own age.

Jared did well with his transition to the nursing home. I packed up and went to stay with my mom over two hours away. I sent Tyson to stay with Jared's mom right before I admitted Jared. There were a few more incidents of Jared being aggressive towards Tyson. I couldn't handle it anymore and I asked her to come and get him until Jared was settled.

I swear I slept for a month. I was so insanely exhausted. I didn't even know I was that tired, I honestly had more energy after giving birth to either of my children!

Tyson stayed with his grandmother until the week before Christmas. I spent time with Catlin, resting, regrouping, and making plans for what would happen next.

Jared had done so well in the nursing home his family requested that I leave him there for now. I agreed. He was happy and gaining weight. His family could come and see him anytime they wanted. He became more social talking with the staff every day rather than just tired and worn out me. He seemed happier all around, less stressed. He had a team of people working for him everyday. More consistency that I could have ever hoped to give him. He had nurses and doctors available to him in the event something went wrong.

I can not tell you how much stress it caused me knowing I was responsible if anything went wrong with Jared. I was so scared he would fall... again..., or choke...again,...maybe a blockage or something. I nearly worried myself to death.

Jared was so happy when I came to see him. He was so loving and happy every time I walked through the door. There was no more fighting with him or having him hurt me and the kids. I could enjoy my time with him rather than being stressed and over worked.

It was hard. At first I felt as if I had failed. I simply wasn't good enough to do it all. I felt like people would think I was going to abandon him. I rented my house and moved in with my mother. She had room and there wasn't much sense in wasting money trying to live on my own when I clearly was emotionally stable for that. Some days I thought I could stay in bed forever.

By Christmas I was missing Jared terribly. I had gone to visit him and picked him up for doctors appointments. But I missed waking up next to him, watching Tv with him, cooking meals for my family, and laughing at the little things.

I wanted to miss him. I needed to miss him. I needed something to put me back on track so I could truly appreciate my time with Jared.

I planed to bring him home for ten days during Christmas. The first weekend we went to his Mother's to celebrate Christmas and Jared's birthday (December 19th). I stayed there a week with his whole family. This was his first real holiday with all of his family, we were all thrilled.

Tyson came home with us, for good, that was his last extended stay at grandma's house. It was time for me to move on and live life as a dedicated mom. I had helped Jaerd as much as I possibly could, I gave it everything I had. I felt good knowing I reached a limit with Jared and that it was ok to want some normalcy in my life. Everyone was happy and healthy and that was my original goal.

Jared stayed with me and my family through Christmas. It was stressful and wonderful. I took Jared to a Doctor's appointment on his way back to the nursing home.

Since then I try to bring Jared home for one weekend a month. Sometimes I visit him between, usually he has a doctors appointment or something to go to. I still have family in our home town and see him when I drive in for various things.

Currently we are trying to move Jared. Jared's brother moved this month and his mother and I agreed we needed to move him closer to one of us. At first I asked to move him near me but his mother decided she wanted him closer to her.

I have struggled with this decision for the last few months. If he moves closer to his mother, two hours in the other direction, she will have to be responsible for doctors appointments and such. She wants to do it. She thinks it will be hard for me to continue on the way I have considering the children.

I really want Jared to be available to me and the kids. We all still love each other very much and I want to continue our little family as it is. I want the children to grow up knowing their daddy and I really like my goofy husband with all of his quirks.

Realistically it's better for him to be close to his mother. Eventually I will have to work or go to school, I won't always have a flexible schedule. Here with me he only has me and the kids, there he would have his mother, step father, and younger brother. It would also make it easier for his father considering he could visit two sons at the same time.

His mother agreed to drive Jared half way anytime I wanted to spend a weekend with him. She also plans to have the kids visit her, and Jared, during the summer or spring breaks.

I'm not sure how all this will work out. Still I'm trying to make the best choices for everyone.


  1. Hi! I'm from BBC and had saved your blog as a favorite a gew years ago. I just want to say that you have done an amazing job and deserve SO much credit. You should be very proud of yourself for taking care of so many things at once. It sounds like this situation is best for now, so just go with it! It's okay to want to get back to some sort of normalcy. God bless you all!

  2. Hi we talked a little this week. I did find you and I am so sorry that you are going through this.I will keep you all in my prayers. Lynna