Never in my life did I know pain this deep and all encompassing. I began to beg God to please just let her make it through surgery> I decided to eat the elephant one bite at a time. Then it was... please let them have got it all. Please let them get the respirator out today. Please let her open her eyes and eat. My way of dealing turned into small incremental goals that were set every day until finally she was being sent home.
She could walk> She could talk...sort of:) She knew who we were. After two weeks in ICU they told her she was going home and she danced around chanting holy shit! holy shit! holy shit! She was so happy.
She has been home now for over a month. Every day she makes small improvements. We did not leave her home for alone for a month. Some days she is frustrated. Very very frustrated. I can't blame her. Life is a hard enough journey on it's own. I am with her always positive, always encouraging, always saying we are going to get through this.
Then on my way home the tears come. We are so blessed> I know we are one of the lucky ones. She beat odds that I didn't even know existed. She is a fighter who wont give up.
But still every day....I cry
My heart goes out to those whose story is not so lucky. I have a pit of fear somewhere down deep that our luck is temporary. What if it happens again? What if one of my boys has it or something else? Gone is the confident..."at least my kids are healthy" whenever life throws a challenge my way.
The brain takes a longer time to heal. Then say...a broken arm or a leg. Patience is the key to the healing proccess. And.. being cautiouse of not over doing it. I'm not just saying this because I read about. Someone close to me a long time ago, had brain surgery. It took her about 10 months to fully recover. As the weeks went by, she kept improving.
I think the "What if's?" are many peoples questions, including my own at times. But, one thing I refuse to do is, dwell on it. Our minds/thoughts (mostly fear) like to play tricks on us. When I get like that, which isn't very often any more. I change it to a positive "What if?" Like: what if i win the lottery tomorrow? what if I haver a good day today? what if I no longer get siezures any more? Ahhh.. you get the idea.
I would say your daughter is on the uphill climb to recovery. And That Is Good.. :)
Hi Janet, best wishes to your Alex. She indeed sounds like a tough cookie. It is an amazing, wonderful blessing that she’s recovering at the rate she is. I was treated for my AVF with an Embolization and the Craniotomy, about 4 weeks ago now and am on the mend. I believe one of the most important parts of healing well and quickly is positivity. Tell her to keep her chin up and press on, she’ll feel right as rain before she knows it! Best wishes to you and your family as well.
I sympathize with you and your family. I understand that you mean though about a blessing and a curse. I have days where I'm completely accepting of my condition and say that I understand the reasoning behind everything that happened and I thank God that I have the ability to still walk and talk. Then I have other days where all I want to do is crawl in a hole and cry and the pain is so bad and all I can think is why me. It will get better. I think one of the things that may be hard for your daughter is the fact that she had so many things in place. I was 24 when my bleed happened. I'm currently 25 and will turn 26 in a month. I got so used to being on my own and being independent, that having to move back home with my mom was like going into shell shock. In addition to listening to doctors and specialists tell me that I now have all these new limitations, I now live back at home with "mom". I can't speak for her but I'm kind of thinking this may be something going thru your daughters head. We spend out entire lives trying to prove to our parents that we are independent and can handle all of the curve balls life throws us but when something like this happens, home is the best place for us to go. There will certainly be ups and downs and my advice would be not to let the fear of it happening again consume you. Live each day to the fullest even if that means staying home and watching a movie as a family. Enjoy the time you have together. Some things are out of our control. We just pray for the strength to endure when they come around.
I have lots of moments that I just cry. Not a hard sad cry, but a few tears of complete happiness. They mostly come when I am in the shower and washing my hair. They come when I tell myself that I really had brain surgery and when I think about how wonderful it is to be alive. I still find my situation overwhelming at times, but those feelings pass quickly and they leave me with a feeling of aw because I made it!