Fragments of a Routine: what remains after the death of a medically fragile child
I have lost my son. I have lost his community. I have lost our routines. I have lost my job and identity. What remains today are fragments.
Life is Meant to be Enlivening
Enliven = to make someone more cheerful. There have been hundreds of days when Levi has had to stay home while Younger Brother and I went of
A Letter to My Son's Care Team
Summer 2016 We have nearly completed our 7th summer of annual clinic visits, where we check in with Levi's long list of specialty...
One Breath in, No Breath out
It can take but a moment for a loved one to die. With no warning a typical day can become their last on earth. I think about this...
A Quiet Medical Epidemic (part 1)
There is a medical epidemic that has been quietly brewing in my community for a couple of years. For the past 18 months, it has been...
Visiting a Dying Friend
My friend Julie says it best "Six year old boys should be worried about where they left their favorite lego figurines... Parents of six...
When my Son is Sick
I live in a complete state of exhaustion all the time and it has been like this for five and a half years. My sleep patterns are...
A Week of No Sleep
In our home, who gets to sleep and when, is very precarious. Levi needs 24/7 ICU level care, which means someone is always awake caring...
Winter Surrender
The first big snowfall arrived two weeks ago and I have been trying daily to bring words to the shift I feel happeneing within me. The...
The Arrival of Spring
It is a beautiful spring day; warm sun, blue sky, and birds chirping. This is the day when I say to myself, “finally we have made it...
