Jackson’s Story

Site created on September 18, 2015

God gave us the most precious gift on October 14, 2014, Jackson James Pahr.  We realize more and more every day how truly special God's gift of Jackson is to us.

Jackson has Mowat-Wilson Syndrome (MWS), an extremely rare genetic syndrome. It was identified in 1998 and there are only a couple hundred known cases worldwide (currently Jackson is the only known case in Minnesota).  It is not a genetic syndrome that Doug or I are carriers of.  Nothing could have been done to prevent it.  The gene mutation happened at conception.  There's less than 1% chance a brother or sister to Jackson would also have it.  Jackson is God's special gift to us.

Jackson's journey started at day one, when no one but God knew he existed.  We could sit here and dwell on what if? why us? questions his whole life, but instead we have chosen to Embrace His Journey.  Thanks for all your thoughts and prayers this last year and for the years to come.  Jackson is a loved little boy who shows us everyday how much he loves the life God has given him.  

Newest Update

Journal entry by Shannon Pahr

Happy Birthday Jackson James!  

6 years ago today, we got to meet you.  6 years ago you changed mommy and daddy's life all for the better.  6 years ago today, you began teaching us life-long lessons.  6 years ago we had no idea the journey to come.  6 years ago you blessed us and you continue to do so in ways we never could have imagined. 

How has it been 6 years?!  You always loved your birthday.  You didn't care for the attention surrounding the singing of Happy Birthday and your cake the first two years but then you embraced it all at your 3rd birthday.  You went around and gave everyone hugs on your 4th birthday.  

On your 5th birthday (your first in Heaven), mommy saw a Blue Jay land on our deck which was the first time I'd seen one ever in our yard.  Today, on your 6th birthday, daddy saw a Blue Jay in our garden and he immediately called me over.  We haven't seen a Blue Jay in our yard inbetween your birthdays - but we are so grateful you've showed up to celebrate with us the past two years.

Today we celebrate your smile and your "hi's".  Today we celebrate your love and inclusion.  Today we celebrate your goofiness and  laughter.  Today we celebrate how you lived your life.  Today we celebrate all you were on Earth and continue to be while in Heaven.

Mae, Rilynn, LaWanda, and another woman have all celebrated more birthdays because of you.  They have thrived again because of you.

You see, J, the world has changed so much since you left it...in ways no one ever could have predicted.  But what we always admired about you, is that you would have known no different.  You would have lived each day in the moment, soaking in all the love and sharing all of your joy.  You keep us going in this broken world.  You continue to touch more lives than we could ever imagine.  You give me hope for a better tomorrow.  Thank you, J, and have the best birthday in Heaven yet!

You're the best little buddy in the whole entire world.  We love you, we love you, we love you.

Love, Mommy, Daddy, and Puppy (and Puppy #2)

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