Today was hard.
Will I ever not feel that way?
So much of today was spent talking with nurses, pharmacists, and thankfully our great docs. Her oncologist from Stanford cried with me today. I don’t do that. I am a private crier.
I have a need for Jennifer to eat, at least one more time. She might regain some of what she lost. She is hungry, but scared to eat. So tomorrow we start fresh to try to get on top of this awful vomiting and nausea. I hope to get her to eat. At least with this new plan I’ll know I did everything and didn’t just–this isn’t the right word– “quit.”
I am advocating. I’m trusting my gut. I have no regrets today in any of those areas. I write that so if another DIPG parent, or parent of a terminally ill child, reads this, they’ll do the same. Voice. Advocate. Trust yourself.
I do regret that it took so much time to do it, though. I missed her day. This gift of a day: I missed it. My hope is that I missed it to ease her suffering and pain later. . .
our far-too-soon later. . .
If missing her today can equal her comfort, it was a worthy trade.
The boys came home tonight. But it’s harder than we expected. In her small periods of happy times we couldn’t just be in the moment with her.
Tomorrow, a new game plan. One of them being the talk with our older son. At a ripe old age of 4, he’ll hear the truth of death. That sometimes people’s bodies stop working and bad cells take over good cells. Which ultimately means sometimes children die, though we hope not to get to that level tomorrow.
All trying to do so in a way that won’t scare him. . . or make him feel guilt that he did this . . . which is the thing that any 4 year old would feel . . .
Today I realized I am hitting the angry stage. I had felt we were so lucky to know we would be losing her. Gave us time, nine months, right?…to plan so many life experiences. We talked about all the things she wanted. We wanted. Jonathan wanted.
But now we don’t have the time to do those things.
Not with her. Maybe we will do it together for her . . . maybe that can be a gift she gives her three younger siblings.
A lot of people wonder why this happens with a good and loving God. How this makes them not believe. For me, it’s fairly simple. . .
If there is no God, then I will never see her again. I refuse….I CANNOT…..survive if I believe that.
And I look at it like this. I love my kids. A lot. But I say no. Even to what is their deepest and truest hearts’ desires. They may never understand the reasons I say no. They may rage against my no. But I still say it.
I believe in God the Father.. and like all parents he has to make choices for his children .. even ones that our children will never understand.
This is my God; this is what He is doing now. I will never, ever understand his why (but I believe he has one), and even if I did . . . his why would never be good enough.
I am raging at him. I think he is a huge dick right now. A total asshole. And wrong . . . so very, very wrong.
But I will still love him.
As I hope my children will when they think I am so very, very wrong.
I will wake up when my youngest calls for me to feed her. I will wake my oldest to give her medications.
For those things I am grateful.
Many people will be thinking of us. Praying for us and crying for us. Giving to us.
For this I am grateful.
. . . and so angry.