What it's like to know your daughter is going to die

The title's a bit dramatic, but given the situation, I feel a little more dramatic than usual.  I wanted to write this post because I know people are curious about what it's like - to know your daughter will die young.  I thank those close friends who have already asked me what it's like, and especially thank those that can share their own stories with me.I will try my best to put it into words - the feelings, the thoughts, the actions, the changes. 
My mind keeps coming back to the country song, "Live like you were dying".  Knowing Cicily won't have a full, long life has, without us even realizing it, inspired us to fill her life up as much as we can with the things she loves.  We haven't gone skydiving or ridden a bull named fu man chu (for those Tim McGraw fans out there).   But I have, if possible, loved deeper.  And done some other things too, like: 
 - Just after we found out (for sure) in December, I wanted to spend every minute I had playing with Cicily and making her laugh.  I stopped talking to friends, stopped taking her to doctors, cancelled therapies, and started focussing on the most important things.  It didn't take too long though to realize there's a reason we have friends (thanks friends for still being friendly), and that sadly those annoying insurance companies still need to be dealt with. 
 - In October (back when we knew her condition, but it was unconfirmed) when I took her to get her 4 year old portraits taken, I bought the big one.  If it were her last portrait, I would want a big one.  Now her 5 year old pictures are coming up.  How many years do I buy the big one? 
 - In November we started to look into chickens.  We should have waited until we had a back yard that should actually accomodate farm animals.  But, would we have the time to wait to give Cicily her own farm?  We knew she'd LOVE them, and everyday when she asks to see her chickens I'm glad we didn't wait.
 - A few weeks ago I was painting Cicily's toenails and then she wanted me to paint mine.  Then she picked up a doll by us and pointed to the dolls toes.  She wanted to paint the doll's toes.  At first I thought, dolls toes shouldn't be painted- that would deface the doll!  Then I realized, what's the big deal, life is short, if Cis wants her dolls toes painted - who cares!  So now we have a doll with cute red toenails. 
 I wish I could say knowing my daughter will die young has made me a perfect person - that I always spend time with the most important people first, that I always remember to be patient and act kindly.  That I do spontaneous, fun things everyday just because you never know what will happen tomorrow.  I wish I could even say that everyday I spent more time with Cicily or never lost my paitence with her.  It's not exactly like all of that.  Knowing Cis will die young hasn't made me perfect, but it has made me a better person I hope.   And, no, I'm still not going skydiving!