Roundtable with Senator Al Franken
Today I had the privilege of being invited by the Minnesota Network of Hospice and Palliative Care to be a part of a roundtable...
What Palliative Care Means to Us
I was recently asked to write about our pediatric palliative care story for a project the National Institute of Nursing Research (NINR)...
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...
Sharing a Muffin
On some days, the smallest of moments radiate with the brightest of lights, and I am filled with overwhelming astonishment, grief and...
I Had Never Imagined
For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future....
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...
No Longer Big
I knew the day was coming and then, it happened.... One of the ripple effects of Levi's severe brain damage has been a much slower...
Beauty and the Beast
There is an incredible dichotomy that arises when you have a child who outlives their prognosis of a shortened life expectancy. 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...
