It was almost 12 years ago that Krause Bears started – born out of a need to share Peter’s medical status with all who so caringly and lovingly followed his unexpected journey. Peter rushed into the world, about 10 days early, on May 9th. A week into his NICU stay (during which I hoteled in at the hospital), the nurse came into my room and said, “Peter took a turn for the worse last night, we don’t know if he is going to make it through the day”. The next few hours become a blur. Peter was baptized before the Flight for Life team arrived. Phone calls were made to all corners of our community, country, and world shouting updates and begging for prayers. We embarked on a month-long stay at Childrens Hospital in Denver. After we came home, the cardiologist promptly sent us back. He felt strongly that Peter should not have been discharged. He shared that Peter’s condition – Pulmonary Hypertension – was the worse he had seen in a neonate, and that if we didn’t do something we would spend the next 12-18 months of our lives watching Peter die. At 7 weeks, Peter had open heart surgery.
The next year plus was spent praying Peter would live, and slowly getting him healthy as we were immersed in the world of the revolving door of case managers, nurses, therapists, doctors, and specialists. At nearly 18 months, Peter seemed to have overcome so much and was finally off oxygen during the day. We fell into the routine of our “new normal”. A year later, Peter became a big brother to Gretchen. Life was good!
Just months later, our Peter was just not quite himself. Some days he was his normal energetic self, others he seemed flushed and happy to just sit and watch the world. Some nights he slept well, others he woke crying – which he had never done before. Days of seeking medical help became weeks, and soon almost months until stubbornly we had him admitted to the hospital. Refusing to leave until a bone marrow was done, our worse fears were confirmed – Peter had leukemia.
The three years of this illness were filled with about 6 months of hospital stays, a few serious infections, and one long stay on a ventilator where we were told to start end of life plans. Peter, miraculously (and I don’t use that lightly), pulled through and by the good grace of God continued to live a life of joy.
The years since those medical challenges have been filled with little sleep, lots of hugs, and priceless memories. Peter has continued to grow, and thrive, and love, and laugh, and very simply make the world a better place. He has shown huge struggles with academics, yet eagerly waits at his bus stop for the school bus every morning. School is his happy place where he thrives in a world full of friends of all ages and sizes that encourage him. He has shown that floating means a slow sinking to the bottom of the pool where he looks like a corpse. Yet, the pool is his second favorite place where he has proven that despite all his lung issues he may soon break the world record for holding his breath (at the bottom of the pool). He has shown that while the world often looks at him and sees Down syndrome, he looks at the world and sees a lot of people that need a smile, a hug, a pat on the back or their hand held. And that hand holding usually means dragging someone along until they are standing in front of someone else – because even with low verbal communication skills, Peter knows the value of relationships.
Yes, Peter makes the world a better place!
About six months ago, Peter was able to articulate his dream. This was a first! He shared, with few words, that he wants to be an astronaut. When he saw that we understood what he was sharing, his face lit up brighter than the sun! And thanks to Amazon, and mom spending way too much, Peter has a NASA authentic astronaut outfit. And thanks to our neighbor, Peter now has a space theme painting on his bedroom walls with astronaut decals.
It was Peter’s dreaming big that lead to this new version of KrauseBears.com See when I saw that Peter took the time to dream, it was a harsh reminder that I had stopped dreaming. The next month or so lead to a lot of time of reflection – a time of releasing fears and embracing dreams. Dreams became goals, and I stand here today almost ready to hit the big LAUNCH button on my dream.
So where do we go from here? Well, for Peter it means graduating from elementary school in just over a month. A place he has had so many joy-filled years, but also where he has gained the skills needed to keep moving forward. Peter ROCKED his interview to get into a project-based arts program at our local middle school. He will be riding the general ed bus as he embarks on the next phase of his school career. He continues to enjoy hours at the pool and park. And, I know he will continue to make the world a better place through his super-gift of simply knowing what is the next good thing to do…..sprinkled with an awful lot of pre-teen sass!
I hope you will continue to come back for our regular updates on Peter and the family on this crazy life adventure!
xoxo
Catherine (aka Mama Bear)