Some girls are just born with glitter in their veins

perfect

One of my favorite parts of the last few days is reading books with her. I wish I had realized sooner how much she would still enjoy them. I read til my throat hurts or she motions to be done.

DSC_0603Tonight we read together with Daddy. But we used picture albums I had made for us over the years. It was fun. .. .and very very sad.

One picture caught me off guard. The one we take their first month of life and every year after. .

……in Daddy’s favorite Chargers jersey.

This year was her last to wear it. She was our first to start this tradition and she is already done. Her last one the day we learned the horrific combination of 4 letters . .DIPG

 

 

Her Stanford drs came for a visit today. To give you an idea they drove over an hour on their weekend. . . to see her . . and us. I have always been confident they are good physicians, but this is just another example that they are good people. It helped all of us to see them. They promised me early on they wouldn’t leave me. . and they have held true to that promise. I am so grateful.

Tony and I talked last night that we are going to whole heartedly concentrate on her comfort. Her drs gave us good advice on her back pain and the location of her tumors in her spine and what positions would be best. Tony got to build a board to keep her comfortable. Already we can tell its making it better for her.

I think it was also helpful for Tony to have a physical job to do that could ease some of her pain.

I asked if they had a guess on how much longer. . . it is of course always just a guess. . but

….this week…

We are doing around the clock morphine now to control the pain and opting not to do any more of the steroid. The steroids job is to take down some of the pressure in her little brain. But the only merciful thing in this death is that swelling can cause her to sleep.

When she is aware . . even when she doesn’t look aware . . she is totally aware.

So it is a little gift we can give her to allow her to sleep and not be totally aware of what is happening to her little body.

She spoke today. “what does that say”

Its been so long. I miss her little voice. And its forever gone. I thought maybe she was unable to speak. But thats not it . . she has lost the ability to form words correctly. Its a warbled, slow, deep slurred speech. She knew it before the words started coming out that way, so she just stopped doing it awhile ago.

Something she can control? or just a typical 6yr old self conscience girl? or…please let it not be

…it scares her?

I just had to step away from journaling to go the baby. . who is sick. All 3 other kids are sick.

REALLY?!?!

But I can’t complain. ¬†. because I have learned it can always be worse. I am lucky to have these 4 children, ill in very different ways. . in my life.

And I have Charlotte here because Jennifer asks for her. When I was pregnant I so wanted it to be another girl. I wanted DSC_0055Jennifer to have a sister. Somebody to lean on….and help through struggles….a best friend.

And I realized watching how Charlotte gives her what she needs daily…she is getting all those things. Although so blunted its the relationship I yearned for for Jennifer.

 

 

 

I love them all. So unique in their own little ways.

Jennifer..giving and independent . The greatest big sister.

Jonathan..devoted and loving. The best smootcher.

Nicholas…strong and protective. The perfect laugh.

Charlotte…innocent and trusting. Simply joyful.

mine.

ours.

Perfect little family.

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