a love story

For those of you that do not know why or how this blog started for our Wylder (in Jan 2011) … here is a very brief explanation.  It was quite simply a way to keep close family and friends up to date on our littlest Warrior.  It helped me immensely to start to write/journal as it became a way to release the happenings in the day, a sort of unexpected self therapy.  It also was such a wonderful gift to our family because we began to receive so many beautiful notes of support from all of you, and when we ran into friends out and about, they simply snuggled us and Wylder vs. asking for all the updates with tears in their eyes and worry in their hearts.  When Wylder passed in July I decided to keep writing to share our grief process and it has allowed us to carry on his ripple effect by sharing with all of you how you can support Wylder Nation.  Some days it has felt like we are asking so much of you, our Wylder Nation Warriors (vote here, donate here, buy books here, etc) and has filled us with immense guilt. But then we are reminded of our mission and our commitment to our Warrior and our Niemann Pick Family and …


So today I want to change in up and share our love story, the story of Steven and I in honor of Valentine day tomorrow … because truth is none of this would have been possible without LOVE.

Steven and I met 13 years ago last month, we were at the ripe old age of 18 & 19 (yes I am the older one by six whole months that he never lets me forget).  We were in our freshman year of collage at Colorado State University and in design appreciation class.  Okay, I know, back up … why was Steven in design appreciation class? (ha ha).  For many of you that have been to college the first year is really just being able to get into a class, so a few gal pals convinced  him and one other guy to register for it and when they walked into a class of about 300 women and now two guys … they thought JACK POT! Ha ha.  One of Steven’s gal pals was bound and determined to get him a girlfriend, so she simply said pick one.  I walked into that first day of class (and for those of you that do not know me I am super mellow and pretty darn quiet), so needless to say, I was bummed that I knew no one in the class.  I walked in just before it began and sat towards back at the end of the row so I could depart quickly.  Apparently that is the moment that Steven turned to his friend and said “that one, that’s the one for me”.  Turns out she knew me, she was a pom and I was a cheer … so after months of them plotting, she finally saw me out on the field and offered for me to come sit with them in that class.  So the very next day I did.

I have to back up again.  As I child I had a few reoccurring dreams, one about sharks (yikes!), and one about what I always believe was my future husband.  It was a dream about me being in labor with a baby and telling the doctors and nurses that I wanted to wait for my husband, this is when they assured me there was no time.  In that moment with room erupts with “he is here’s” at which point I get a glimpse of only his hand, before I wake up.

You know where I am going with this don’t you?  So that very next day as I sat next to the pom and Steven came in a few minutes later to sit next to me.  When I looked down, it was the hands, the hands from my dream.  I of course did what any respectable girl would do and I got up and left (ha ha)!!! Needless to say, it was in that moment I met my soul mate, and I believe that with my whole heart.  I made him work pretty hard for it, but we had our first date in April of 2000 and the rest is history.  I eventually shared my hand dream with him and where the next year was spent with him entering each room with his hands first, sprinkling those fingers and announcing his arrival (ha ha).   So, before this blog turns into a novel this covers the next 13 years in photos.




 2001 (our first trip of many to Maui and in the fall we got a puppy, miss maddie)


the first time we walked through the chapel in maui

the first time we walked through the chapel in maui


2002 We turned 21 together



2003 I graduated in the spring and moved to Arizona. We were officially  “on a break”, something I think is good for all young couples to do.   Steven graduated in the fall and moved to Maui.


2004 Time to come home, I went to Maui and we realized our forever.  He came home, got a job and moved to Arizona



2005 We got engaged


2006  In love and living the dream

yep, that's uncle puppy too!

yep, that’s uncle puppy too!

2007 We got married in Maui with 86 of our closest friends and family


2008 We got a house (a major fixer upper) and all our wishes came true … we were pregnant


2009 Magic … welcome to the world Wylder James

 Wylders Trip 0443

2010 We started living in the moment


2011 We met many of you through this blog

2012 We learned to say goodbye


2013 We met all over again with the right kind of life perspective


After 13 years, 1 dog, one most beautiful baby, 10 trips to Maui, over 50 airplane rides, 16 weddings, 7 Dave Mathews Concerts, countless tears, and lots of laughter we are some of the lucky ones, the ones that meet there soul mates.  Although it is my makeup and my heart to be positive, I am also very honest.  What having a sick little one does to relationships is hard, and we are no exception.  We became strangers who learned very different lessons from our baby and our journey, and who both regretlessly made our child our priority.  But we always BELIEVED, and that somehow has made us never fall short.  Did you know that 85-90% of families raising special needs children’s end in divorce, and that OVER 90% of families with terminally ill children do?  It is a sad commentary when you think that our children choose us, they believed in us … and we should all do the same for ourselves.  I believe that this is true is because our children are in some way our glue, and making one another your priority through the trials and tribulations of the day to day requirements is hard.  But Steven and I were reminded that there is no greater gift you can give to your children and yourselves then a loving relationship with one another.  We refuse to let a disease, Niemann Pick Disease, take more from us … so we love and we embrace it all, the ups and the downs and we trust each other and our love to be forever.  What we can always agree at the end of any day (no matter how hard or how wonderful the day was) … Wylder is our greatest gift and we will always be okay because we have each other.

Happy Valentine’s Day Wylder Nation … Happy Valentine day Wylder James, you are loved.  Happy Valentine’s Day love, my soul mate, my forever. xoox


valentine's day 2012

valentine’s day 2012



  1. Shannon, you absolutely took my breath away with this post. What a beautiful love story! You and Steven continue to inspire and you both personify exactly what the Warrior spirit is. I am so moved with this heartfelt and incredibly honest post….you put it all out there so beautifully. Last year’s Valentine’s pic of Wylder is one of my favs…he reminds me of Cupid himself with his shy foxy expression. Luv u Wylder James xoxox sending hugs and valentine smooches up your way, buddy xoxoxox

    • Mommy and Daddy says:

      I love that photo too Leslie, our little cupid!! I hope the honesty will help others see that they are not alone, but to believe in your vows and your love for one another. Love really does concor all! Happy Valentine’s day. xoxo

  2. So very very true. It is hard to keep a marriage together after the loss of a child. <3

    I hope that you both are working through your grief together and separate. Sending you lots of love!


  3. Adriana Klas says:

    Wow! I LOVE this love story! I cannot believe it has been 13 years :) That is amazing! You are both amazing! Your love inspires us every day! We love you guys! XOXO

    • Mommy and Daddy says:

      It is hard to believe, right Adriana? 13 years and it seems like just yesterday. We love you guys and cannot wait to see you soon. Is Miss Em missing her ‘love’ Uncle Steven? (tee hee) Happy Valentine’s Day. xoxo

  4. Cathy Johnson says:

    This is an amazing post, Shannon. You are absolutely awesome to share so honestly with so many – especially those of us who’ve never met you. Cheers to you and Steven for so determinedly deciding not to let that horrible disease take any more from you. Leslie said it so well – ‘you both personify EXACTLY what the Warrior spirit is’. You have had so much taken from you, yet you both continue to give and give. As always, sending good thoughts and much love to both of you as you continue your journey. xoxoxo

    • Mommy and Daddy says:

      Thank you Cathy. We are so blessed to feel so connected to our Wylder, we absolutely feel the power of his spirit everyday and it helps us so much. Thank you for your love and thoughts always. Happy Valentine’s day. xoxo

  5. Aww look at him looking up at his Daddy, gorgeous boy. happy valentines day xx

  6. Dawn Hammarberg says:

    Loved your post Shannon. Thanks for sharing this on your blog. I remember the first time you told me about your “dream.” Just as beautiful now as it was then. I never tire of hearing it. Yours and Steven’s is a wonderful love story of a couple that is definitely meant to be. Hugs, hugs, hugs. <3

    • Mommy and Daddy says:

      I remember that too Dawn! I don’t think the story ever gets old either … it has always been meant to be. :) xoxo

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