Will;;

I didn't think I wanted to share this one but I've realized writing helps me at least just get it out. I think we all have different ways of coping, right and I hear myself keep saying this week sucked, today was hard, I'm so drained, I need a break. I feel like I scream those things at my boyfriend and he turns around and acts and makes sure he takes me away, he makes a weekend filled with things to do that don't make me sad and Im so thankful but I feel so bad because in those car rides to places or even sitting and waiting brings me back to why I'm upset and its a hard battle to try and balance. Today is Monday the 26th of October and today ill sit down with my 10 year old and have more of a real conversation about life and what the outcome of this disease is. My Jay is so religious. He goes to church every Sunday and he sings his church carols when he's bored and he's so brave. One day we were driving home on a gloomy day and the sky had light beams coming through it and he said "Look mom its God! He's looking down at us" he then turned to me and said Im not afraid to die mom, I know i'll be going up to heaven with God. Its okay mom" I internally cried so hard and just patted him and said it'll all be okay Jay man. Jordan gets to sit through every medical visit and asks questions about his treatment and requests how certain things be done as he's gone through them and he has figured out what things make him more comfortable. Well, last week I was finally able to find a social worker who can assist us with writing out his will. I chose to do this now as this disease is very unpredictable. We can be doing so well and it attacks and damages and set us back. Jordan has never asked me where this disease was gonna lead him too and I have never brought it up maybe its been a we both know but wont speak about it, idk to be honest. Tomorrow is our meeting with social work and I was told that it is easier for children to have these conversations if they know before hand why we are having these conversations. All weekend I had to think about this and figure out how I was going to have this talk with him. I printed out the packet to fill out with the team about his wishes and what he would like if something were to happen and I did it because I am a parent who believes that children have a voice that needs to be respected and listened too. Im sure many people have their opinion about this matter and yes I know if something were to happen as a parent you just decide end of life plans for the child but what about them?! What about things they want or desire during tough moments like those. I plan ahead so much because even though I know nothing prepares any of us for the loss of a loved one no matter how much we think we can plan for it I at least want to make sure I know what my son wanted while I still have him all mentally here able to explain to me. I had the conversation with him over dinner today and it was a bit harder for him than I thought it would be. He had a lot of questions and I made as appropriate as it should be for a 10 year old but I learned something from it all Jordan wants it all to end with a party. He wants all of us to be happy and celebrate his life so Im so thankful that even though that conversation was hard to have I did because I was able to learn what his wishes were. Life.. Life is bittersweet.

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