E is for Epilepsy: Adjusting Her Sails

At this moment, I am sitting in a messy house that needs to be cleaned up a little, laundry that needs to be done, a grocery list should be made, and my family probably would benefit from having something besides raw chicken for dinner.  Unless we really miss going to the emergency room.

But, I am having one of those “must write” moments and my brain will not let me do anything but get my thoughts out into the world.

Tomorrow, Greg and I go to Sacramento Sutter Children’s to get the result of the Neurological Pediatric Psychological profile that Jake participated in a few weeks ago.  That story is here:  E is for Epilepsy: The Big Update

I have gotten really good at waiting for results, tests, etc.  If you want to read a little more about that process, you can read this:  Shut Up and Wait 

I’m not really anxious.  I’m not excited.  Anxious means that I’m waiting for biopsy results.  Excited means that I just found out that I get to go on the world’s largest zipline.  Or I finally got my pony.  I’m somewhere between those two emotions.  Anxieted…?  Yup, that’s how I’m feeling.

Tomorrow is one of those days where our future will change and a lot of our life will change with it.  I’ve had a lot of those days.  Life changed in a day at 25 years old with the words “breast cancer”.  It changed again a few years later when I wrote in my journal, “It’s gone.  Everything is gone.” after we saw the remains of our house when a wildfire took it all.

When I was 33, life changed in a day, again, but for the best possible reason and it was because this little face entered the world:


In and around those days, we have had all the typical life changing days of jobs, moves, schools, surgeries, birthdays and anniversaries that the rest of the world gets to have.

With every change, every life altering bit of news, I have to find the “new normal” of life.  I’ve gotten really good at being adaptable and changeable and usually only whine or cry a little in the discomfort of my soul having to break in a new pair of shoes.

My mom recently sent me, and a few other wonderful women in our family, this bracelet:

trimming her sails

If you can’t read it, it says, “She stood in the storm, and when the wind did not blow her way, she adjusted her sails.”

It is the perfect sentiment for my life.  I love it and I have to hold back tears every time I see it.

Tomorrow, I will once again stand in the wind and see which way the wind blows.

We could find out that Jake has ADD/ADHD.  We could find out that he needs counseling and more techniques for helping him cope.  We could need to see a therapist pretty regularly.  We could find out that they really don’t know what is going on in his little brain.  Or, we could find out that it is much more serious and we could see a future for Jake that we really don’t like.

Whichever way the wind blows, with God’s grace, I will adjust my sails and head towards our New Normal.

The hymn It Is Well has become one of my life anthems.  It talks about the fact that life includes peace days, windtorn nights, giant waves, and things we think we cannot face.  The challenge of the song, is to say, “It is well with my soul”.  I recently found a new version of the song and since there is nothing like the perfect song to round out my thoughts, I will leave you with this song.  This is where my heart is and what I want my life to be more than anything else.

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