Thoughts Today

I spoke too soon yesterday when I posted. While I was gone at Dad's on the computer, Brian had a small seizure. The therapist was there, of course, and he was doing fine when I got home. I find myself almost unable to even step out to get the mail right now. The seizure involved the arm and shoulder, plus the neck and some with his mouth, and lasted about 45 sec. He knew what was going on the whole time. Brian felt fine afterwards, just scared more than anything. Then this morning around 2 a.m. he woke me up with tremors in his right arm. I checked the time, and this one lasted a little closer to 2 minutes, and involved his arm, shoulder, neck and mouth. I was just starting to turn him on his side (when it had progressed to the face), and about that quickly, it stopped. Again, he was awake and coherent all along. He had another bought of tremors about 30 minutes later that just lasted around 20 seconds. Needless to say, Dr. Anderson has decided to up his decadron to help control swelling in the brain, which is likely the culprit.

Tye returned to school today, and Brian's dad came for the day. I had the chance to get out of the house for lunch and run some much needed errands. I will try to update the blog when I can, again, depending when someone can stay with Brian. The DC jack is shot on our laptop, which has turned out to be an expensive and time-consuming problem!

Otherwise, Brian is doing well. He is feeling good, and his appetite is good. His pain level is where we want it and he continues to move his legs a little more than he had been.

What else is there to say? I could tell you things are great, but they aren't. We are literally just waiting for him to die. I'm not sure what I'm waiting for...to get on with my life? I don't see that being so easy or happening anytime soon. He waits each day for his symptoms to get worse, and sometimes they do. His vitals are great, and he almost seems discouraged by that. I go in and out of that feeling of panic and dread, that feeling of losing control and knowing my life as I know it is being destroyed right before my eyes. I told the hospice nurse yesterday that aside from watching Brian suffer, the hardest part is watching him seem ok, but him waiting, expecting, maybe even wanting to die. I asked him the other day to try to see each day as a gift, and if it wasn't a gift to him, let it be a gift to us...another day that Tye has a daddy to share his day and love on and giggle with; another day that I have a husband who loves me and continues to be the compassionate, caring man I married; another day for the girls to have their time with him; another day for the rest of his family to see him or hear his voice. I think the alternative will come all too soon, and I want him to make the best of the days when he feels good. This is just all so sad, so devastating.

I didn't ever think it would be easy to watch someone die. My mom found my Grandma dead one day...in her 80's...I was devastated. I still miss her terribly. But she was who she was and our relationship was special up to the last moment I saw her. The same goes for my mom...the person I knew, the woman I loved and felt loved by, the Grammie that my kids knew...she was forever etched in my memory as that person. She didn't suffer, she didn't go down hill, she didn't start acting different, our relationship didn't shift. I think that a sudden death is a horrible thing. But so is suffering. The only gift that melasuckanoma has given us has been time to really show each other how much we love each other. The bad part about the time issue is that it has also given us time to realize beforehand what we will miss...time for our relationship to shift from being close and going on dates and kissing and laughing, to instead crying and sleeping on the couch and missing special moments as a family and changing dressings. I am not saying that I would rather Brian have been killed in a car wreck. I don't get to choose any of that, so I won't make any attempts to wish anything. I do know that we would have lived our life right up to the last moments, like my mom and Grandma. In time, there came a peace for me with my Grandma. I am still working on that with my mom. Our life as an extended family is so different now than before, and I am happy my mom never had to suffer through any of those changes or those adjustments. Life has eventually become what it is, and we all just move on. The changes that we face in our home seem to already be happening, and that is the most difficult thing for me to battle right now. We took our house off the market. I'm not sure why, except that it felt better to be in a familiar place in a home that has always been filled with love. I also didn't want to pick up and attempt to start over because it isn't time to start over, it is time to enjoy these moments, this time together, however long.

We are now having meals brought in M-F. This is such a blessing. I don't even know how I would keep up...I'm not keeping up right now as it is. The meals have given us a chance to have some family time without me stuck in the kitchen. Thank you to so many of you who have shared this with our family. Also thank you to so many who continue to contribute to Brian's benefit account, which is allowing me to continue to stay home with Brian, and also take care of Brian being off work. I can't imagine facing these heartbreaking moments without all of you.

Many blessings to you and yours,
Jenni