Wow! I hadn’t realized how long it had been since my last post until I received a couple emails from other parents.
I would like to start with an update on my boy. He’s doing very well! We have gained pretty good control over his seizures and he is making great progress in therapy.
He has started to put a bit of weight on his legs and he is even regaining the ability to take food by mouth.
Braxton and I have been through a lot since my last post. The most eye opening and life altering event we’ve had to deal with is his father leaving me.
It wasn’t easy. My life was torn apart and I was forced to start over. In the end I realized it was for the best.
I had let myself fall into a depression. I didn’t leave the house and spent every second I had with my boy. My husband leaving me gave me the push I needed to think about myself for once and make my health a priority.
Braxton and I are living our best lives. Happier than we have ever been.
I am residential parent so I do have majority custody. He wanted to do 50/50 but there was no way in hell I was going to allow him to take my son 50/50 when he never spent time with him when we were together. We did compromise so he does see him more than the standard custody agreement but again there was very little pushback on the terms.
I hate having to give him up when I do but that also gives me the time I need in order to reset, recharge, and relax. I worry about him when he isn’t around.
Our living situation also changed. I didn’t want anything to do with the house so I walked away from it free and clear. My sister took us in while we were between places. I was able to find something fairly quickly.
I strongly believe that our living environment has something to do with the changes in seizure control. Living with his father was stressful and I think he picked up on it.
Our last trip to the emergency room via ambulance was the end of August 2018.
That was a learning experience. I road over with him and ended up stranded when I couldn’t ride with him in the helicopter to Nationwide Children’s. I remember standing there alone crying as I watched my boy taking off without me.
As soon as he was out of sight I pulled myself back together. I found a ride home and made my way down to Columbus to be with my boy.
When I got there he was being watched over by every nurse on the floor. He has a way with the ladies. It’s the incredibly long eyelashes. They just pull you right in.
My mother always has been a strong support system for Braxton and I. She was at every doctors appointment and came down each time he was in the hospital. It was no different this time around. She did what she could to get work off to stay with us. Luckily we were only there for about two days.
This year we were home for Halloween, his birthday, Thanksgiving, and Christmas. We were able to split his time without a fight.
I believe I covered all of the events for the part of 2018 I missed.
Braxton and I continue to make the most out of each day we have together. I will try better to post and update as things happen!