"We are going to do everything we can to keep you comfortable and safe"
"You should get your ducks in a row and enjoy each day"
"Science hasn't come far enough to find a cure"
"Even when we get the results and have a name, the treatment won't change, there won't be anything more we can do at this time"
These are some of the words I have heard in the last couple of weeks from 3 different doctors. The hope I once had is slowly disappearing. My physical body is continuing to challenge me daily.
"I'm not going anywhere, I have a job as a mother to finish here first"
"I'm going to travel with my husband and enjoy my life how I used to"
"I'm going to chase after my kids as we play together"
These are the words that I have been saying. Little do these doctors know who they are dealing with. I kinda have this idea that if I'm just really happy and provide enough love then only good will come back to me. So it's in my DNA, whatever. I can fix that right? I'm not done here so I WILL fix it!
It turns out that whatever this declining health thing going on with me has something to do with a genetic DNA neucleotide, something [insert large medical words here]. After I see the genetic neurologist through the MDA I will have more information and can fill you in.
I am scared. I cry myself to sleep at night with the thought of leaving my family behind. They need me just as much as I need them. I bargain with God constantly to let me live long enough for them to have their own families and not "need" mommy so much. We are all grieving right now. The past 2 years were filled with so much hope but as things progress and the simple fix answers run out, we start to lose some of that hope. I can't walk through a mall without falling or have a conversation without needing to sit down because I get so dizzy and disoriented. I'm scared that when I am home alone with the kids something will happen and they won't know what to do.
I have HOPE and a lot of it!!