Birthday 👦

To be honest I never thought I would see this birthday unless some sort of miracle or treatment option was given to Jack.  And here it is…  12!  Tween!  12! 12 years Jack! You have never complained about your disability and/or disease.  You deal with pain and suffering daily and never once let it take … Continue reading

Transition

Ever since I stopped blogging regularly, it seems to be a trend that I just make big life announcements here. So that being said, it is will sheer delight, pure fear, happy tears, and sad tears to share that we are moving back to Colorado.  Our chapter here in Illinois has reached the end.  Our … Continue reading

The Valentine Gifts

Today, Valentine’s Day, was spend at the rehab hospital getting Jack’s new fitted wheelchair seat. The ride down was quick and easy which is rare traveling to the city. The weather was a rare warm. The building was strikingly beautiful. The people were rare and beautiful too. Amputees. Wheelchairs. White folks in the lobby the … Continue reading

10 years

It’s hard to believe it’s been 10 years since I learned of Hunter Syndrome, the incurable disease. We came to know and care about many children during these 10 years. Children who like Jack fighting each day and children who have entered heavens gate way to early in my mind. As you journey with these … Continue reading

11

You did it Jack! 11 years! This past year you have shown me so much courage, strength, patience and commitment. You stayed out of inpatient this past year. You didn’t go under general anesthesia this year. You enjoyed skipping an infusion here and there. You reminded us of the little things. The simplest of things- … Continue reading

Ragbrai 2018 & helping fund a cure

It’s that time of the year again- Ragbrai 2018!  And Team Jack is geared up for another ride across Iowa.  We have grown again, 14 riders this year!  And the route has many familiar stops.  In fact this year it ends in Jamie’s hometown area, the Quad Cities.    This years Ragbrai 2018 fundraising efforts … Continue reading

Mother’s Day

Ever since I could remember I wanted to grow up and be a mom. I was that little girl playing with stuffed animals and dolls playing out motherhood. On September 7th, 2007 I was blessed with a little boy name Jack. He came into the world as a fighter and earned his badge of courage … Continue reading

9 years

I remember it like it was yesterday. I remember driving silently to the hospital. I remember waiting in the waiting room. I remember the consultation room and the position of the chair I sat on. I remember the entourage of med staff who came into the room I remember the words, “Mucopolysaccharidosis 2…degenerative disease…no cure”. … Continue reading

10! 

10!   When we learned of your full deletion we were told that we would be lucky if you lived to be 10. There is nothing lucky about you Jack. Your a gift that keeps on giving.  Last week I stood in Party City staring at boys birthday supplies with heartbreak. I spent days online … Continue reading

Ragbrai 2017 

We are 6 days out for Ragbrai 2017!  Team Pirate Jack has grown this year, we have 10 brave riders taking on the Iowa weather, hills, and farm country living.  It will be a great time for all.  Jason won’t be able to ride this year due to work and I will only be able … Continue reading