What I learned from Katie

I can't do justice to this topic here. For one thing, it's too large, and for another, it's always growing. But I want to mention a few things, and I would love to know what others learned from her life, too. However, as MB pointed out, once Katie became sick, she "pulled in," and didn't want to have contact with many people. She set such good boundaries for herself that perhaps there aren't too many people who learned a lot from her after she went to the hospital, outside of the family, hospital and hospice staff. Dad, you might not want to read all of this.

Here are some of the things that I learned from Katie:

- I need to stop saying "I'm sorry" so often.
- I can't fix a lot of what I see that hurts my heart, but

- I can be present with others who are suffering.

- being present is all that I can do, and while it feels small, it is enough, because it is everything I have to offer.

- Katie's dreams were bigger than Make-A-Wish could grant. She dreamed BIG.

- her sense of humor was subtle, strong, witty and expansive.

- courage can be seen in hundreds of small steps.

- there are many ways to honor another person's dignity.

- I need to say what I mean, and not be timid about asking for what I need.

- thinking "Mommy loves me" was a comfort to Katie.

- a dying child will worry about the future (and the feelings) of those around her.

- Katie felt that the treatment, surgery and suffering she endured were all worthwhile, since she was willing to have surgery again in order to live (this wasn't possible, but she suggested it).

- when you are really sick, you may not want to see a lot of people, even those you love.

- it's okay to watch a lot of movies and TV during cancer treatment. A LOT.

- when you are really sick, it's hard to focus on anything or think clearly; games, books and schoolwork can be difficult for really sick kids.
- a child knows who she likes and doesn't like, and it's all okay; we need to listen to that knowing.

- kids see right through adults who underestimate them (or who think they are smarter than kids).

- some hospital (administrative) procedures are silly, and they should be waived.

- you can be in a powerless position, and still find a way to do good within it.

- you can be a hostess to your guests, even if you can't wait on them (you can get your mom to do it).

- a cell phone is a good tool for a sick kid.

- cable TV with a DVD/VCR is a good thing to have if you are bedridden.

- old comedy re-runs are fun to watch in the morning.

- having your mom (or another loved one) in the room with you when you are having an MRI, CT or PET scan is a good thing; holding hands is even better. An iPod is helpful, too.

- a feeding tube may not be as bad as you think it will be. It eliminates pressure to eat or take medicine by mouth.

- it's possible to laugh at yourself in the strangest circumstances you can imagine.

- it's possible to feel loved in the most dangerous situations.

- Katie had more inner strength to deal with hardship than anyone I've ever known.

- the bathtub is a good place to listen while someone you love reads a book to you; also to talk about your deepest feelings, drink sparkling cider from a wine glass and to enjoy the comfort of having someone shampoo your hair for you.

- it's a privilege to be allowed to do these things for your loved one.

- when you are really loved (and beautiful inside), you are gorgeous with or without your hair.

- a huge scar is a sign of strength, survival and endurance. It's a badge of honor, not a disfigurement.

- "it" could be worse.

- severe pain can make it possible to wish for death, even at the age of 12 years.

- hope is important.

- age does not limit insight or maturity; a young person can have the wisdom of a wise, old person.

- no one knows exactly how you feel; no one, but people do care deeply.

- setting boundaries is a healthy (and essential) thing to do.

- true love knows no limits: not space, time, suffering, life or death.

I love you, Katie, my teacher and friend, my only daughter! I am still learning from you.