Some girls are just born with glitter in their veins


Today was hard.

Getting ready for her IV meds yesterday

**Getting ready for her hydration yesterday**

Will I end any night ever again not feeling that way? ?

She had a accident in the middle of the night. But woke up in a good and lively mood. We gave her meds and she drank a bit of water…then threw up. I feel like we keep lying to her. That these meds will help and she will feel better, but its not happening.

So much of today was spent talking with nurses and pharmacies. And thankfully our great docs. Her oncologist from Stanford (she is keeping her word and not leaving me) I cried with her today. I don’t do that. I am a private crier. I needed her so desperately. She was there. This is why I trust her. And why I trust anybody she sends us to.

Then her new one . . . in charge of her hospice care. They heard me, my concerns and fears and ultimately my needs, both selfish ones that I need to know I did all I could and ones that my mommy gut says are coming.

I have a need for her to eat, at least one more time. I feel like she might just regain some of what she is lost if she can eat. She is hungry, but scared to eat. So tomorrow we start fresh. To try to get on top of this awful vomiting and nausea. And I hope…..get her to eat. But at least with this new plan I will know I did everything and didn’t….this isn’t the right word….just “quit”.

Also she hates meds by mouth. Always has. So tomorrow we will also try a new path. I know its only been a day, but when time is this limited, when a tumor is this hungry and fierce. . . a day is more than enough.

I am advocating. I am voicing and I am 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 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. My hope is simply 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.

*some snuggle time*

**some snuggle time**

The boys came home tonight. But it is so much harder than we expected. Her small periods of happy times we couldn’t just be in the moment with her.

Tomorrow a new game plan with them. One of them being the talk. With our older son. At a ripe old age of 4 we are going to have to talk to him about the truth of death. That sometimes peoples bodies stop working and bad cells can take over good cells. Which ultimately means sometimes children die, though we hope to not have to get to that level tomorrow.

All trying to do so in a way that won’t scare him. . . or make him feel the guilt that he did this . . . which is the thing that any 4yr old would feel . . .

Jonathan she loves you. So much. She is protecting you most. Unfortunately that means she is pushing you away. But don’t remember this time . . remember the fun, remember the laughs.


**Doing Jon boys hair**



**Proud kids . . finished styling!**



Today I realized I am hitting the angry stage. I have felt we were so lucky to know we would be losing her. Gave us time, nine months right…to plan and make so many life experiences. So we did. 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 3 younger siblings .? ?

A lot of people wonder why this happens with a good and loving God. How this makes them not believe. For me its fairly simple. . .

If there is no God. Then I will never see her again. Then she is gone. 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 there 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. 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.

But I will still love him.

I am so mad at him. I think he is a huge dick right now. And I am raging at him. I think he is a total asshole. And that he is 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.

Tonight though . . . we all sleep under the same roof.

I will wake up when my youngest calls for me to feed her. . . .  I will wake my oldest to give her medications.

For both of those things I am grateful.

And 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.