Life Beyond The Chair

  "We have to move." These words were spoken by Stephen in the Fall of 2007. "After the Holidays, we have to leave." I was devastated. I actually felt physical pain in my heart as I let this idea sink in. We had purchased this home and poured our blood sweat and tears into it. We had owned other homes, but I always knew we would not stay in them. Red House was different. We planned to stay for always. This development was the latest in a long line of losses. We were 3 years into my paralysis. We had gone through all our savings, credit cards and equity in our home. We were at 0. The financial devastation of paralysis is something people never really understand. Even with health coverage, the expenses are enormous. Surgery, rehab, medical equipment , home adaptations, the list is never ending. To lose our home, our beloved Red House in the mountains, this was too much. To know it was because of me was almost more than I could bear. Stephen was offered a job in S...

This is a picture of my Hannah, Wyatt and Makaela taken on Thanksgiving 2012. As a family, we have raised our children to be grateful in all things, the good and the bad. Not just at Thanksgiving time, but all year long. Little did we know what a huge part the word "Thanks" would have in our life. I have so very many people to thank that have walked along this journey with me over the last 12 years. Some are close family and friends and some are strangers that I might meet while in hospital or out in our day to day life. Our friends, have overwhelmed us with love, help, and anything we might need over the past 12 years. They have provided meals. Christmas, fundraisers, birthday parties, babysitting, rides, entertainment during long recoveries, Prayers and SO much love. For every loss and devastating setback we encounter, an army of people that come along to pick us up, dust us off and help us move on. There is gratitude and beauty in our story. A quiet and sweet spirit ...

"The outcome is unknown, that is all I can tell you at this point." These were the words spoken to Stephen and I early one May morning in 2000. We sat huddled together in the Loma Linda Hospital pediatric ICU. Earlier that week our Spencer, 11 months old, woke up with what seemed like the stomach flu. After 5 days and many tests, we sat face to face with a surgeon discussing how we may lose another child. It was all too much. We had lost Mason in June of 1998 and then Spencer's twin Samuel when I was 5 months pregnant. I was about to become completely undone. Spencer was born with a diaphragmatic hernia. Most often this defect is discovered on ultrasound when you are pregnant. This defect carries a 60% mortality rate at birth. Spencer had already surpassed the odds by being 11 months old before we found out about his hernia. At that time there was only one other known case that was similar to Spencer'. That child has since passed away. As the doctors explained, we ...

To my Stephen: YOU and I created this crazy life 26 years ago with a blind date at the Wild Animal Park. What a fitting start to what has been a very "wild" life.😊.  You showed me family, you taught me love. We began a life that I would trade for nothing else. The journey has been beautiful, messy, amazing and full of love. When life gets us down, we cling together as a family and keep going. You have taught me to work harder and love stronger always. I am so very grateful for everything that you have worked so hard to give us.❤️ To my Max: YOU made our "we" a three. You made me a mum. You made us a family. You have always been the leader of our little tribe of Hupers. Even when you were little, you were my right hand, my helper, my rock. You teach me about unconditional love each and every day. Our John Boy, you are the glue that holds the tribe together. To my Makaela: YOU are my first daughter. My wild and free spirit. My artist, my amazing and creative ...

On June 19, 1998 I gave birth to my fourth child and second son, Mason Tyler. Our sweet angel was born still at 28 weeks due to complications from a chromosomal abnormality. This post is dedicated to him and all the families that have lost precious babies.❤️ In the darkened room, I watched the blurred image of our fourth child appear on the sonogram screen. I had gone alone to this appointment because it was the Friday before Memorial Day weekend and Stephen was home with our other three kiddos( Max 3, Makaela 2 and Hannah 18months) getting ready to head up north to the cabin for the long weekend. The technician and I were chatting and everything seemed quite routine. Then suddenly she was silent. You know when you have that moment, that feeling in your gut that something is wrong? This was that moment. I asked if everything was ok, and she said that it was. I did not believe her for a moment. Silence Stephen met me at the door when I arrived home. The doctor had already called. T...

The number 3 definition listed for the word brew is: "a mixture of events, people or things that interact to form a more potent whole." When I looked in the thesaurus, the word "hodgepodge" was listed. As I prepared to write today, this word "brew" challenged me, so when I looked it up and found these meanings, I was surprised. These are my exact feelings when it comes to my family. We are definitely a potent brew:). As individuals, we are all very strong and independent and our individual personalities alone are quite the brew. However, together, we are potent, strong, intense. We compliment one another, we make each other stronger.  We are a hodgepodge of so many thoughts, feelings, likes and dislikes. Every family is I suppose, but our shared experiences, which if you know me, are things that most families will never experience in one lifetime. We have been through it, that is for sure. Even if I do not include our journey through my paralysis, we have...

I grew up in St Paul Minnesota as the only girl in a mostly conservative Irish/Italian, Catholic family. My wardrobe was always something of a big deal to my mom. I was her only daughter and she loved to shop. As a result, I was always dressed very well.(Thanks mom<3) In addition, I attended Catholic school and we wore uniforms, so I never really had to think about what to wear. My wardrobe was dictated for me. A "choice" in outfits was not even something I thought about. My mom laid out my clothes and I got dressed. When I was 11, my parents divorced and my mom moved out. This ended my lifestyle on the Best Dressed Kiddo List.  As I slowly grew out of my clothes, my dad thought it was perfectly fine to wear my older brother's hand me downs. My dad came from a family of all boys and really had NO clue how to dress his daughter. He would tell me that my uniforms were for school and my brother's clothes were fine because I was just using them as "play clothes...

When I think of the word paint, I think of the program on my computer that allows my kiddos to make pictures. I have a whole file of these pictures that my children have made over the years. They start with the heads that have arms and legs attached. Then they slowly move into more detailed images. This is a picture of my 3 youngest drawn by my youngest daughter when she was about 8. These pictures are as precious to me  as any of my "real" pictures. They chronicle our life through the eyes of my children. Everyone is smiling, the sun is always shining and everything is good, safe and happy. As we have traveled through the years of my paralysis, I put a whole new emphasis on the art that my children produce. I ask myself questions like: "Is this dark?" "Are they sad, scared, angry?" I have never seen what I would classify as a "sad" picture. This has given me a real sense of peace, even if it is a false peace. I am sure that an art therapist...

The word "walk" has been the center of my life for almost 12 years. On November 17, 2004 at 1:30AM, I kissed my 6 kiddos good bye, and walked into the hospital to have our youngest child. I had no way of knowing that this walk would be the last time that I would ever walk again. I have analyzed that walk for the last 12 years. I remember after kissing and hugging the kiddos, I shut the van door, stood there and waved as my friend drove home to watch my kiddos while I had the baby. I walked inside the hospital, rode the elevator to the fourth floor arrived at my room and sat down on the bed. That was it. It was all so simple and ordinary. I dream about that night often. I agonize over what happened in the next 2 hours and if there was anything I could have changed. There was a moment during the epidural procedure that resulted in my paralysis, where I knew something was wrong. I wanted to yell "stop", but I did not. This is the moment that haunts me the most. In th...