Wednesday, July 15, 2015

Its never good when your child realizes they are going to die

When Jacob got diagnosed, we had a few doctors look at us and tell us they were sorry.  Sorry for this horrible diagnosis.  Sorry for the life that Jacob is going to have.  Sorry for everything we will be going through.  We had no idea what was going to lie ahead.  We had no idea of the pain and heartache it would cause.  We knew there was no treatments.  We knew there was no cure.  We knew that the only cure is when he passes on to be with his Father in Heaven.

One thing we never did was tell Jake that he would die from this disease.  (ugh...just saying that makes the water works come out)  

Then we get this booklet from the insurance company  Saying a doctor has requested this to come to us.  Its called "my wishes" and its a book to fill out on his wishes when he gets really sick, what he wants and doesnt want.  When I got the book, it ruined my whole day.  It made me so upset and I couldnt stop crying.  Just the simple thought of him passing is enough to make me cry.  Well yesterday, I just had a feeling to go through this book with him.  I read him the first line, and it says..."There are many things in life that are out of our hands.  My wishes gives you a way to control something very important-how you are treated if you get very sick." and he said...mommy, dont say it!  I am going to cry if you say it.  And I said, dont worry Jake...im going to cry if I say it...so I wont.  

It was like a punch in my gut just knowing...yep, he knows that his time is coming soon.  But how?!?  We never talk about it.  We never talk to him about it or to other people with him in the room.   But after thinking about it, I was thinking...of course he does.  He is always so sick, every month hes in the hospital, he is in daily pain...how can you think you will get better if you never do.  He has gotten worse.  In a months time, things have gotten worse.  From last year, he has gotten A LOT worse.  How can you know you are getting better when you never do?  

I dont know when his time will come.  All we can do is love him and celebrate EVERY day.  Because we have seen him go from fine to very sick in just a couple hours.  So we dont know what the day is going to bring.  We dont know what big milestones he is going to get to see.  We dont know how many more memories we get to make with him.  We try to make memories every day because we dont know if that is going to be our last with him.  

His bday is coming up.  He will be 13!!!  After last year, I didnt think he would see this birthday.  And we are SO HAPPY that he is still here.  Last years birthday was AH-MAZING!!  It was definitely some memories that we will never forget.  But this bday is a big one too.  We want to do something even bigger!!  I am hoping to check off some of his bucket list items.  I got serious with him and told him that he may not get to do everything he wants in his life.  So if he could do anything in the world before he cant anymore, what would it be?  This is what he said...

Meet a youtuber
Meet lindsey stirling again
go to disney world
Go to the dbacks game and meet some players (we go to dbacks games a lot...this is how we make a lot of memories.  This is one of Jakes favorite thing to do.  He has met 1 player last year for his bday and he got traded the next day)

But he said he would think about more haha.  So I may update this.  

So if anyone knows of any way to help us, let me know!!  Or if you know of something thats cool that he would love...I would love to hear it.

I just want Jake to feel normal...at least for a little bit.  I want him to forget that he is sick.  Forget that he is in and out of the hospital.  I want him to forget that he has a terminal disease and that he lives in daily pain.  I want him to experience life that he should be living!!