A Different Boat

I feel like a competent writer when I am trying to express my philosophical or theological ideas or talking about abstract or societal concepts.  When it comes to telling my story, I find it much harder to express the depth of an experience.  It seems like everything I write down, although internally filled with enormous emotional weight, comes out cold and clinical.  Nevertheless, over the last several months I have slowly been processing through the traumatic memories of Wilder's first weeks to begin to write down our experience.  Years from now, when more of the details have faded I'm hopeful I will be glad to have this record.  So forgive the disjointed, clinical explanation writing as this was as much about processing for me as about sharing the story.   Almost a year ago, I was 36 weeks pregnant with my 4th child when my 7 year old suddenly spiked at 103 degree fever.  Next came a sore throat and then a rash all over his torso.  So of...

I've seen lot of people questioning the claims that we wear masks to protect other people more than to protect ourselves.  It seems illogical that a mask would do a better job at preventing something from going out than it does as preventing it from coming in.  So I set off to research these claims and thought it might be helpful to share my layperson summary of what I found out for those of you who, like me, have questioned this advice.  I am not a scientist by any means but I am good at researching and synthesizing information.  As a disclaimer, one I feel like should be included way more often than it has been, we still don't understand covid-19 very well so all information is subject to change at any given moment depending on the results of more research.  When we breathe out (or sneeze or cough), particles from our body are carried in droplets (aka spit).  Those droplets are what contain virus cells if you are sick (or probably/possibly if you ...

It's amazing how you can see the same thing over and over yet miss the significance, but every once in a while the power of a symbol or moment nearly knocks you off your feet. For the last few weeks especially, I have been feeling this profound sense of dread towards the future.  I'm tired of (many aspects about) our situation in the present and the future looks like a lot more of the same.  It's like we're running a footrace of unknown length so there is no way to pace yourself and no markers to pass to remind you how much closer you are to the finish line.  We're just running, and running, and running.  And somewhere amidst that, I have lost my hope and replaced it with dread.  I dread the ongoing separation and isolation from our community.  I dread turning on the computer to "go" to church each week.  I dread questions from the kids about why they can't go the places they want with the people they want.  I dread Colby missing birthdays and ...

I periodically get the bug to write a blog again.  As I thought about a couple different blog ideas, I meandered over and started reading old blogs I've written and came to two conclusions. 1) I have grown tremendously over the last 8 years.  Reading my own words about my hopes, fears, and experiences over Wesley's lifetime so far, I can recognize a ton of learning and maturing that has happened in that time.  I know a ton about systems I didn't know even existed 8 years ago.  But more than that, I have had to wrestle with so many big emotions and challenges that I'd been spared from for most of my life up to that point.  I cringe a little to read the naivety in some of my posts and I wonder how I will look back at the words I'm now writing in 10 years.  I guess I hope I will continue to grow so I will be able to see the immaturity I have now through more wise eyes.  And hopefully can read with grace and kindness towards the person I am today. ...

When I was pregnant with Waverly, we decided to bank her cord blood knowing that research using the stem cells found in umbilical cord blood was beginning for kids with brain injuries like Wesley's. In January 2016, I first contacted Duke about being part of their clinical trial using sibling cord blood for kids with cerebral palsy.  After being #6 out of 5 kids for phase 1 of their trial and missing the age cut off by the time they did phase 2, we finally got the call last month to schedule for Wesley to receive an IV infusion of Waverly's cord blood through Duke's expanded access protocol (essentially following the same procedure as those in the trial but with more generous inclusion criteria and without it being free to us). This is not a miracle cure, but we are hopeful that we will see gains in the next year that we wouldn't have seen otherwise.  We want Wesley to be able to interact with the world and be independent within it to the best of his abi...

Our society seems to push gratitude in a context of comparison: Thank you for my health (that I'm not sick like that person over there) Thank you for my family (that I'm not alone like that person) Thank you for my home (that I'm not like that homeless person there) Thank you for food to eat (that I'm not starving like those children in Africa) We see others that we judge to be less fortunate than us and use that as an opportunity to feel grateful.  What happens though, when your world falls apart and you find fewer and fewer people fall into that "less fortunate" category?  How do you still find gratitude in your heart when your world is crumbling apart?  How does Job find gratefulness in the absence of health, family, and material possessions? Perhaps we need a mind shift away from the "I'm so thankful I'm not like that person" to a place of genuine gratitude for the good and the bad and the way those together have formed our life....