Strong Willed – Part I

This story may bring you thoughts of sadness or grief, but I want to change your perspective on that. Connor’s story is a launchpad of strength, triumph of fortitude, and a celebration of resilience. I spent some time marinating my thoughts on how I and if I wanted to share this deeply personal information, but I think it is important to tell this story. I have talked about it before on my social media (#connorstrength) and on podcasts, but this is different.  I am going to share the story from letters I have already written to both of my sons.  This is a lesson I learned from the experience I wrote about in, “For Dad.”  This letter was written the day we found out Connor (only 22 weeks in utero) was very sick. This is the beginning of The Sisu Way for me.

March 23, 2015

Kaden and Connor,

This is my first time writing to the both of you.  Hopefully at some point in your life you will look back on these writings with appreciation, honor, and use it for strength in your life.  I hope that if all goes to plan, if we raise you to become the men I know you are capable of, then this goes without saying. 

I started writing after my dad, your grandfather, passed away a week after Kaden was born.  I was motivated to do so because of what I had found in my own baby book.  I decided to look in it one day and found something my dad (and mom) had written to me when I was very young.  To this day it inspires me and that is why I want to do the same for you boys.

There are a few reasons why I am starting this now.  One of them is this: Time is a privilege, not a right. I asked my dad to write to Kaden when he was very ill and he never got the chance to. Life is precious, unexpected, and unpredictable, so I will continue to write.

Today we found out that Connor is extremely ill. He’s very anemic, has an enlarged heart, and suffering from hydrops, which is a potentially fatal fluid build up.  There is fluid surrounding Connor’s heart, abdomen, and the area between his scalp and skull. We found out that your mom’s body has developed antibodies that don’t match up to Connor’s blood, which means her immune system is attacking the red blood cells in him. We met with a specialist today who gave us three choices on how to proceed. Eliminate the pregnancy, do nothing and let Connor naturally pass, or go through a series of very risky intrauterine blood transfusions every 2-3 weeks in hopes to keep Connor alive until he is term. The doctors informed us that if we moved forward with the procedures that there was a risk that Connor could be born with some complications such as deafness, blindness, cerebral palsy, etc. We have both been in a state of shock and worry today.  I feel like I have been under water all day and your mom hasn’t stopped crying.  We feel helpless because Connor is inside and sick and we can’t do anything to help him.  It is a terrible feeling as a parent.  The pain I am feeling now is what has caused me to write today.

I read one of my favorite poems called Invictus today several times to help me recalibrate and strengthen my spirit.  Here it is: 

Out of the night that covers me,
Black as the pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds, and shall find me, unafraid.

It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate:
I am the captain of my soul.

We’ve decided to drive on and fight.

We will not let this beat us.  I don’t care what the challenges are.  We are going to get through this dark time and come out stronger on the other end.  You mom and I are going to see the doctor tomorrow to come up with our plan.  We have to keep you healthy so you can grow as much as you can.  When it is safe to bring you out, we will do so and do everything we can to keep you safe.  This is not over.  We all have a lot of work to do.

Stay strong,



Part II will be out soon.  Thank you for taking this journey with us.

3 thoughts on “Strong Willed – Part I

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