Much More than Just About Lupus

Our story is much more than about lupus. It's about love,hope,faith and trust.

My husband and I both grew up in the typical middle-class American families in the suburbs of Minneapolis, Minnesota. We participated in sports, got jobs as teens, and graduated high school. I went on to start college immediately after high school. Clayton chose to save money first and started college three years after high school graduation. We met in 1992 when he trained me at my new job as a server at Perkins. We started dating just days before I moved away to school. I returned home every weekend to spend time with him and work. In 1994 we found out that I was pregnant. We decided that I would move back home at the end of that school year and commute back and forth daily to finish my degree. Clayton finished his school year as well, then took night classes in the fall so that he could work more hours and save money for our future. Since I was closer to completion than he was, it was decided that I would complete my degree first. I graduated from college with a Bachelor's Degree with a double major of Criminal Justice and Sociology in 1996. Clayton never returned to college.

After the birth of our son Tanner, we had the same dreams and visions of our future as most families do: dreams of our first home, more children, successful careers, little league games, dance recitals, and children graduating college with successful futures ahead of them.

Within a few years we built our first home, and I followed my heart and left my job outside the home to start my own child care business and be home with Tanner. Clayton started a successful construction business; we were blessed with our beautiful daughter Meghan and signed our children up for sports and dance, dreaming of our future. Though some questioned the logic of our decisions, we continued on and lived a "typical" American life.

Shortly after the birth of Meghan, Tanner was evaluated for developmental delays and began speech and language services. Seeing this as only a minor bump in the road and still filled with hope and promise, we continued our lives, moving forward as planned.

Then, our path changed direction when Tanner was diagnosed with several disabilities at the age of five. The most concerning of these diagnoses were Intellectual disabilities and ADHD. These diagnoses altered some of our dreams for Tanner, but we remained optimistic and moved forward. Over the next few years we built our second home, our businesses grew, and we added to our family with another son, Parker. Years past, and like many families, we were constantly on the go taking our children from one activity to another most days of the week. As time passed, we again had to alter our path and dreams for Tanner as he continued to struggle with his disabilities. At times we were overwhelmed and disheartened, and we would ask ourselves "why"? Why so much for one little boy to struggle with? We could accept it if this was God's plan for us, a way to teach us something, something to grow from, but why at the expense of a child? It didn't seem fair.

Eventually Tanner had to stop playing sports with his peers as his abilities and small size put him at risk for considerable injury. As each new sport season approached, we would have to break his heart and again explain why it was not possible. Tanner was saddened by this but ALWAYS quickly turned it around, accepted it and moved on with very little complaining. With no local opportunities for disabled athletes, we had no options for team sports. Tanner could often be found hitting baseballs and golf balls around the yard, dribbling basketballs, or riding his bike. Then in 2009 after some research and guidance we learned that a local delegation of the Special Olympics had been formed in our area! We were all thrilled! Tanner finally returned to the field as a member of the Monticello Mavericks, Special Olympics Minnesota. He participates in both softball and basketball and loves it!

At age fourteen Tanner was diagnosed with Autoimmune Thyroid Disease and Human Growth Hormone Deficiency. Tanner began hormone therapy, and we continued to move forward, path unaltered. Over the next year we went about our busy lives, dealing with the day- to-day challenges as they came, rolling with the punches. Then late in the spring of 2010 something changed in Tanner; he was very lethargic and lacked the energy and ambition to do so many things he loved to do. We watched him closely with concern but thought that maybe he was not getting enough sleep and perhaps treatment for his sleep disorder needed to be reevaluated. When he started to complain of intermittent chest pain, we were not sure what to think anymore. Was this something new, or perhaps just a pulled muscle? His softball season had just begun, so we continued to watch him closely to try and figure out what was going on.

When these symptoms continued, getting worse and more frequent, we could no longer sit back. Over the next couple of days a series of events unfolded that after seven weeks led to a Lupus diagnosis. We were devastated.

Our lives would be forever changed.

We ran the full gamut of emotions - first deep sadness, anger, and frustration, then acceptance and determination to make a difference, to make a change. We now recognize this as a grieving process, not grief over a life lost, but grief over the loss of the future we thought Tanner had. Through it all we have felt guided, supported and strengthened; God's presence in our lives has never been stronger. So many things seem to have come full circle. Choices we made over a decade ago that so many questioned because they didn't seem logical now made sense and seemed guided to us. Time after time when perhaps we have had a rough day and the weight of the issues we have to face daily presses heavy on our spirits, God has always been there to show us in some way that he cares.

Our determination to make a difference quickly developed: First to learn more about Lupus, then into a fund-raising effort to support Lupus education, client services and research. Our ideas grew into something we never could have imagined, the Living With Lupus & Fighting Together Family Fun Day. The response to this event and the overwhelming support from friends, family, our church, strangers and the community as a whole has shown us that we are indeed blessed. The generosity, compassion and the willingness to help is everywhere. We feel surrounded by love and compassion. Meghan has shown us what a strong, capable person she is and has taken the initiative to talk to Student Council at the middle school and high school to get started on fund-raising efforts at both places. Through Tanner's acceptance and strength, Meghan's determination to help make a difference, and the support of the community, God has shown us He is present.

Test of Faith

When faced with a situation such as ours, especially since Tanner already struggles with other disabilities, it would be very easy to be angry, lose faith, and be bitter about WHY this had to happen to our son. But this has shown us that there ARE so many good, kind, loving, generous, compassionate people out there. It has only strengthened our faith!

God has given us the strength to keep us moving forward down this path He has chosen for us. It has inspired us to form a non-profit organization, Living With Lupus & Fighting Together. We were fortunate to have excellent health coverage for Tanner, but we know many others are not as lucky. Through this organization we hope to help other families that may be dealing with a financial crisis due to a new diagnosis of Lupus, raise awareness, and build support services. We hope to make a difference in others' lives and help them to find the same peace and acceptance with which we have been blessed.