Saturday, April 20, 2013


i sat in the lobby of the children's hospital with shilo, and clumsily held her and pushed her feed at the same time.  it was cold and flu season, and we had just finished an outpatient appointment.  i did not want to sit in the crowded cafeteria surrounded by germs.  i didn't want to sit on the chairs where others had sat in the lobby.  so i found a little ledge, and sat and fed her.  i was pretty oblivious to others around me, mostly because so many people stare (even in a children's hospital) when you are feeding a kid with a g-tube.
out of nowhere a woman approached me.  she smiled and said she had been talking to her husband and noticed me from upstairs (they have a balcony type overlook).

'my daughter has the same thing.  they are going to put a g-tube in too.  that's why i noticed you.'

i talked to her for a little bit.  her daughter had just had her av canal repair, and was getting ready to get a pacemaker.  she would get a g-tube down the road as well.  or at least that was the plan.
there has been a lot between there and here.
here is ugly.
here is hard.
here is waking up to a facebook update that says, 'sofi esta con Jesus.'  and gasping.  and crying.  making a meal, and wishing i had the right words to make the pain less.
here is asking again, the same questions i have been asking for a year now.  about life.  about death. about children.  about healing.
here is knowing the truth, and saying the truth, even when i don't feel it.
here is holding on tight to the fact that, 'He will wipe every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.'  revelation 21:4
here is longing for that day.  not for my own sake.  for the sake of a family who have lost part of their hearts. their little. their sofi.

1 comment:

  1. I love your blog, my son has NF 1. He was diagnosed with a huge tumor shortly after birth. Please keep writing. I love your style, your wit, your husband, your beautiful girls, and your blog. (I didn't mean that about your husband, I just meant he seems like an awsome, rockin', supportive guy)