Some thoughts

My heart has been very heavy the past few months.  Just seeing Jacob suffer in the hospital is just horrible.  I sit there and cry a lot because I just feel helpless.  When he was so sick and had to be put on a bunch of meds to help him come back to us, I got in my car and I just cried and cried.  I have done a pretty good job of holding things together until I get alone and start to think and then the walls just break.  I cant be strong anymore.  I cant be the rock.  I am so beyond scared that the worst is coming.  We have had doctors tell us that.  That it seems like this is all the calm before the storm.  We are very good friends with the ICU floor.  Every nurse and doctor know us.  Thats not something I want to be friends with.  I mean they are all great people...but that just means Jacob has been there too much!!

This last hospital stay I realized that these people really do think of us as family.  We were having nurses come from other floors to say hi and to check on Jacob.  We have people from the respiratory team fighting over Jacob and who gets to see him.  We have a girl from the line team who left to another job and she came to say good bye to Jacob.  It was really sad and he ended up crying a little...which if you know Jacob, you know that he does NOT cry over things like that.  We have doctors who work harder for us because they know Jacob and they know that he needs a little bit more attention.  We have doctors that dont even have to look at past notes because they know Jacobs history by heart.  We have nurses who bring Jacob his favorite things before we even get to the room because they know he loves seeing his gifts on his bed.

This is not a life that I wanted to live.  I thought for sure that my 2 boys would move out and get married and give me lots of grandkids.  And that Jacob would play basketball because he was so tall.  But instead we get to worry about Jacob being sick all the time, and going to the hospital every few weeks, and what we are going to do with Tyler because he is left without a mom for a while, we deal with behavior problems with Tyler because he is tired of Jacob getting all of the attention.  I wish that Tyler would understand that Jacobs attention is not fun!  But of course he doesnt.  He is only 9 and doesnt really understand a whole lot.

We know that Jacobs time is coming soon.  When...well we dont know that part.  But I just want Jacob to live a good life.  I want him to experience things he should be able to experience.  I want him to rest easy knowing that he had a good life.  I am trying so hard to give him that life.  To take mito away for just a little bit.  To make sure that he gets experiences.  To make sure that he knows that he is loved and that there are people all over who love him and pray for him daily.  I try hard to make his life as normal as possible.  I want him to get in trouble.  I want him to do things he isnt supposed to do.  He is supposed to be a tween!  He is 12 years old and I want him to be able to enjoy things a normal 12 year old gets to enjoy.

Sorry this post is all over the place.  I am struggling with emotions right now.  I just wanted to write some of my thoughts down so I dont forget them...haha.