Sunday, February 8, 2015

Ski camp

As if I needed one more reason to love Shriner's Hospital...

Last week, Steven was able to go to Shriner's UnLimbited camp at the Park City National Disability Center. Here is a link to a news story about the weekAnd this one at Deseret News. And another at Park Record with lots of good pictures of Steven. (He's in all black with some blue on his coat.)

He came home so excited that he had learned to ski.   He also just had a blast with the other kids that were at the camp.  Several of the kids were cancer survivors as well, and I could tell that he really just loved getting to know some kids that knew about some of the stuff he deals with.

I was nervous to send him off for the week, but seeing him so happy with his new skill and so excited about the friends he's met, I am really happy he got to go.

Here is a picture of him from the KSL story.  He's with Drew, who is also a rotationplasty kid

Thursday, February 5, 2015

Winning the cancer fight

It's been an extremely rough couple of weeks watching Alisa go through this awful cancer stuff.  There have been so many times when she just doesn't seem like quite herself--the pain and medication is just too much.  But even when she's a little crazy, I love to be around her because she is still there, only almost like she is behind some cloud.  It's hard to describe.

Yesterday, though, she called me and it was just like the old Alisa saying "Hey, what are you doing?"  It was just an absolute breath of fresh air.  When we talked, it was as if the past few weeks were just a dream in the past and she was all back.  I went up to the hospital and visited with her.  She was all herself, but there was a sadness that I haven't seen much in my very hopeful, fierce cancer-fighting sister.  As we talked, I felt like it was just dawning on her that she might not win this fight after all.

I can't describe how hard that is on so many levels.   There is the selfish part of me that realizes how lost I would be without her and what a gaping hole would be left in my heart.  But the real sadness comes from seeing her suffer.  It's hard to see her in so much pain, and so when I say suffer, I do include the physical part.  But even more than that, it is so hard to see how sad she is to think of leaving her family.  She is proving through every decision that she is willing to do whatever is in her power to stay alive.

I guess that is where we come to the hardest thing for me.   And it is something I've grappled with through all these recent trials in my life.  It is this powerless feeling in the face of death and disease.  That even with all the medical advances we've made, we are still human and we are subject to death.   I've talked before about how Steven's cancer really burst my "bad things only happen to others" bubble, but the more I go through, the more I see that our lives are in God's hands.  I won't say we are powerless to do anything, because a quick look at Alisa's cancer fight proves otherwise.  But ultimately, no matter how much we would love to live, we aren't immortal (yet ;)).  And that is really hard for me to comes to term with.

Really, the only way I can is to trust that God's hands are good and that His vision is perfect.  It's an easy phrase to write or say, but really trusting Him when things look so bleak is very different.  When I lost Daniel, at some point, or in waves, there was such a feeling of resignation to God's will.  Also a feeling that fighting something that had already happened was futile and that what was done was done.  Every emotion in between came along with that--anger, confusion, deep sadness, guilt, hope, love, comfort, peace--all of it.

I don't know the point of my post--certainly I'm not saying Alisa should be resigned to death.  I feel like her fighting spirit will be the thing that will save her, frankly, already has.  I guess I'm just saying that I wish that her will to live were enough to get her better.  Doesn't it only seem fair that those that fight the hardest should win?  I think so.

But I think that God's version of winning has little to do with surviving mortality.  And if we go by our understanding of His standards, then there is no doubt Alisa has already won.

This is me, Alisa and our brother, Jon.  The three of us were born within three years of each other.  We took this picture on Alisa's birthday and even though the light is doing weird things on my face, I just love it.