My Journey

Chapter One: In the beginning

Born in Alton, Illinois to a German immigrant and USAF veteran, I was a rebel from the start.  I look back on my childhood and wonder sometimes why my mom didn’t pack me off to kiddie boot camp.  I was a very active tomboy as a child, with a mind of my own, which of course only amplified in my teenage years.  If I had to describe myself as a child in a few words, I would say: loving, outgoing, goofy, active, persistent, and very, very stubborn.  I had a wonderful older sister to fight with constantly (I was the pesky little tattle tale sister  😂) but as the years have gone by, my sister has become my best friend and there is nothing I would not share with her or do for her.

My mother divorced when I was 3 and proceeded to raise us on her own.  I have a lot of respect for her – a foreigner in a country, with 2 young children who she never allowed to go hungry or without a roof.  She worked hard to provide for us, along with obtaining her naturalized citizenship in the US.  We moved around a lot…usually for Mom to find a better paying job to support us.  I went to three different schools in the third grade.  For me that was awesome because each move we made, within a day or two, I knew everyone in the neighborhood.  On the other hand, it was more difficult for my sister and it was for that reason, later in my life, my husband and I spent almost 20 years in the same town and same house while we raised our children.

In 1975, my mother re-married the man I consider my Dad.  My biological father was an alcoholic and after he left us when I was three….it would be 10 long years before I saw him again. I’ve always referred to him as “Daddy”, probably stemming from the fact that he left my life so early.  When Mom remarried, there were the difficult times (remember I was a rebel teenager) but Dad hung in there with me and was always the one who encouraged me and rooted for me throughout the years. 

At age 13, we had new neighbors move in next door – a couple without children.  I enjoyed playing games with them and eventually started to attend the Baptist church they went to – much to my mother’s objections.  It was there that I gave my life to God, accepted Christ as my Savior and was baptized in the Spirit that day.  I will never forget that moment of acceptance and being bathed in the Spirit, for as long as I live.

I was always an underachiever through school – combination of laziness and boredom with things I already knew. (Helps to have a sister 3 years older).  It was not until the high school that I really started to apply myself. I graduated with honors so remember, even if early school is not your thing…your time to shine will come!  I inherited my reading and writing skills from my mother and my math and science abilities from my bio dad.  So the world was pretty much wide open to me.  After high school, the Marines tried to recruit me for linguistics (at that time I was fluent in French and German) but I ultimately decided I wasn’t ready for such a serious commitment at age 17.

Chapter 2: Becoming a young adult

As did my mother, I had “gypsy” blood and as a young adult, I moved around a lot and had so many jobs that I eventually adopted the avatar name of toomnyhats. I worked for a company to input data in the very early days of Wang computers, I worked  at a radio station in Cape Girardeau, worked for a law firm in California, did bookkeeping for a real estate company in St. Louis, managed a restaurant and in 1986, I joined the United States Air Force and served 4 years and 3 days active duty.  It was a wonderful experience!  I was an electronics specialist for the E-3 AWACS aircraft – once the recruiter saw that I aced the Math test, I don’t think he even looked for any other jobs for me.  Female with excellent math skills….he probably got a bonus 😂  I trained at Chanute AFB (now closed) and then moved to Tinker Air Force Base in Oklahoma. It was there that I had my first two children and after the birth of my first, a son, I knew without a doubt God’s purpose for my life.  I enjoyed my job tremendously in the Air Force! My fellow brother and sister veterans will understand when I say it is like being a part of a huge family where teamwork is second to none and you can always count on each other.  The heavy lifting and cramped quarters in the aircraft took its toll on me though, giving me frequent neck pain, so when it came time to re-enlist, I sought to move into the medical field but found nothing available.  The first gulf war had just broken out shortly before I separated from the USAF with an honorable discharge and it was not too long after that, the military froze separations.  I struggled quite a bit with guilt feelings for separating as the war began. I felt as if I had abandoned my fellow soldiers. But in retrospect, God was looking out for us.  As a single Mom, I would have been deployed once my second child was 6 weeks old and I thank Him still today for keeping me together with my children.

Chapter 3: Becoming a Minnesotan

After separating from the USAF, I moved my family (myself and 2 young children) to Minnesota to join my parents who had decided to move from Missouri to the Rochester Minnesota area. Minnesota ranked high in education at that time so I decided it would be a good place to live. My parent managed a guest house in Rochester so they were gone every other week. This was a perfect arrangement because while they were gone, I was there to hold the fort down for them. It gave us some space yet we were still there for each other. I will forever be grateful to my Dad for insisting that I stay at home the first year after my daughter was born. I did not have that same privilege with my son and thoroughly enjoyed exploring our new surroundings with my children. At the end of the year, my independent streak came out and I knew that I must find a job to support myself and my children. My lifelong interest in the medical field led me to investigate the Respiratory Therapy Program at Mayo Clinic and I set my sights on that. I had my GI bill available to me, but required money to live on so I joined the Army Reserve Star program and they paid for my schooling so I had two sources of financial aid. It was an adjustment to have to take my children to daycare again, but a necessary evil if I wanted to stand on my own two feet. I began the 2 year program in the fall of 1991. The first year consisted of classes in Anatomy & Physiology, Inorganic and Organic Chemistry, Microbiology, Physics, etc.  The second year consisted of Mayo Clinic courses and clinical experience at the hospitals.  I graduated the program with a 3.97 GPA. That was only by the grace of God because I lived 45 minutes from school so my typical night was to have the kids in bed by 8pm and then spend the remainder of the night (usually until midnight) doing housework, classwork and studying. The alarm (or in my case, four alarms) went off at 4am to start the day. First, my shower and getting dressed, then getting the children up, dressed and breakfast given and then off to drop them at daycare before heading to class. During that first year, I became friends with many people but one was very special. He had two children and was recently divorced. We spent hours talking about our children, our likes and dislikes, our life histories and before you know it, that friendship turned into much more. They say there is no such thing as love at first sight but I believe when you walk close to God, he places a light that burns bright in your heart, when you have found his choice of mates for you. My light burned bright for Mark. Our relationship blossomed as we advanced through the Mayo Respiratory program and before graduation, I married my soul mate and love of my life on May 8, 1993.  Marrying a born and bred Minnesotan, signed and sealed my life in this cold but beautiful state. I wouldn’t have it any other way! We graduated the end of May and both began work at Mayo Clinic which we liked very much.  We tried to work opposite shifts to minimize on daycare.  At this point in time, we were a blended family, my two were with us full-time and his two were with us on some weekends and other occasions.  Mark eventually adopted my two and on July 17, 1994, we added another one to the family and repeated the process almost exactly 2 years later.  The youngest one was attached to Mom and Mom alone. She refused to take breast milk from a bottle shortly after returning to work.  This required me to take a leave of absence from work since even though I was fortunate enough to have breast pumping equipment and room available, since she refused to take a bottle, it was pointless.  I didn’t want to give up breastfeeding her so I took first a parental leave of 6 months and then a 17 month educational leave which I used to pursue a degree in Computer programming.  When the time came to return to work, I was about 8-10 classes away from my degree but required too much time away from the kids.  It was a no brainer decision about what was more important. The total brood was made up of 2 boys and 4 girls.  I often felt sorry for my husband having 3 girls and a wife full-time in the house clogging the bathtub with our long hair.  We enjoyed spending time with all the kids and going to various activities they participated in.  In 1999, after witnessing a lot of bullying going on at the school the children attended, along with lack of an adequate gifted program, we sat down with the two older kids living full-time with us and discussed options of homeschooling.  They were all for it so the year after the oldest in our home was in 6th grade, we began a new track of life. We were blessed with loving neighbors and friends within the home school community so that, along with church activities and sports, kept our kids very socialized.  I liked having the children home – I was always a mom who got sad at the prospect of school starting each fall so this was a wonderful change.  We soon settled into a routine.  By then I was working halftime because we felt it was important that we raise our kids rather than school or daycare.  We praise God for that opportunity.  We were not rich and many times lived paycheck to paycheck, but God always provided everything we needed and much more. Jesus tells us in Matthew 6:26, “Look at the birds of the air; they do not sow or reap or store away in barns,” and yet your heavenly Father feeds them. Are you not much more valuable than they?”  This verse has always helped me be worry free – even in the toughest times.  The next few years were what I consider “normal” years.

Chapter 4:  A Curve in the Road

In 2001, I noticed subtle changes in my body.  One day it was full of strength and ability and the next, I could barely climb a flight of steps.  On those days, it was difficult to even pick up my feet. We called them my shuffling days.  I eventually went to the doctor, who sent me to a neurologist.  Of course, Murphy’s law kicked in and on the day I saw the neurologist, I was having a good day.  They chalked it up to stress and ask me if I wanted to see somebody.  I said, “Yes, I would like to see somebody who can figure out what is wrong with my body because my mind and stress levels are just fine.”  Needless to say, I think I offended a couple of doctors.  Over the course of the next 1-2 years, odd things were happening to my body, mostly legs.  They became jerky and sensitive.  I had strange sensations down my spine along with severe scapular pain that sometimes radiated through my body to the front leading some to believe my heart was involved.  Everybody was perplexed and at one point we just started referring to it as a bizarre set of symptoms of unknown cause. In January of 2003, the cause became known.  I got up out of bed and went down.  Mark helped me up and we got me to the emergency room.  They set me up with MRI’s of the entire spine along with neurology appointments and sent me home with crutches. By then, my feet were spasming terribly, drawing my big toe up and the remainder of my toes down.  It was quite painful.MRI severe disc  I only got to one scan – the cervical.  I remember the day so clearly, my Dad was taking me to my appointments since Mark was at a homeschooling event at the state Capital with our children.  I received a phone call from my primary physician to go straight to the emergency room because I had a severely ruptured disc in my cervical spine.  We headed straight there. I saw the image and was shocked.  At the C5-6 level, my spinal cord was compressed to half the size it should have been.  Everything moved fairly quickly after that.  They admitted me to the hospital and gave me IV steroids to reduce the swelling and 3 days later did an Anterior Cervical Discectomy & Fusion (ACDF).  Most people with disc ruptures, have surgery and complete recovery, however because mine was not discovered right away, along with the fact that I have a congenitally small cervical canal, it left me with much damage.  I spent a few weeks in rehab learning to use a manual wheelchair as well as a walker.  During this time, faithfully every evening, Mark would bring the kids to see me.  He never told me until much later, how much they cried when they left and on the drive home.  During my stint in rehab, I was required to see a psychologist to aid in dealing with the life change.  What they didn’t understand is that I already had my help, my Lord and Savior, Jesus Christ.  He gave me the strength to persist through rehab and all the complications that went with the spinal injury I had incurred.  I played praise music in my room to keep my heart close to His and soaked in the devotionals brought to me by friends.  The psychologist said I was in denial and gave me his card.  I assured him that I was fully aware of my condition but that I had the greatest Healer on my side and whether I walked again was irrelevant – God will continue to bring joy to my heart.  And my joy shines bright!

Chapter 5:  Same but different

I arrived home to a huge banner the kids had made to welcome me back, along with flowers.  I was so touched.  My wonderful husband had done a tremendous job of maintaining the household and routine while I was in the hospital.  A few days of adjustment and we started back with our routine.  Many things were the same.  We did our homeschooling, I would do what I could do in the house but knew my limitations.  The following summer after my surgery, my spasticity became so bad that my leg would jerk violently.  They tried a plethora of medications, none of which worked on the spasticity but did a number on my brain.  I couldn’t remember anything I said or things that people said to me.  My children teased me mercilessly – we are a somewhat sarcastic family.  By the end of the summer, I told the doctors that enough was enough.  I’d rather “roll” with my full mental capacity than try to walk without them.  The meds weren’t working anyway.  In January 2004, God blessed us by giving us the resources to buy a ramp wheelchair accessible van with hand controls.  I hadn’t driven in a year so the new-found freedom was a breath of fresh air.  I could shuttle my children like before to church, homeschooling functions and other activities. It especially took some of the burden from Mark of driving everyone everywhere.  Even though I had a disability I didn’t consider myself disabled.  I just used a different mode of getting around.  I remember my oldest daughter asking me once, “Mom, don’t you miss being able to do things you used to do?”

I answered her with a question, “What is it that I really need to do or should be missing?  My joy comes from God, my family and many wonderful friends.  There is nothing that I’m missing that takes away that joy.

We tried to keep family things as normal as possible.  While there certainly things I could no longer do, we got creative and found ways to make tough things easier and focused on the things I could do. Through it all, God stuck by me, my husband stood with me, and my children continued to love and accept me as if nothing was different.  In fact, because the younger ones were still so young, as they grew older, it wouldn’t occur to them to mention to their camp friends that I was in a wheelchair.  Their friends would later come by and they would say, “You didn’t tell me you Mom was in a wheelchair.”  To my kids it was the same old Mom, just getting around in a different way but all was normal and they truly would forget to mention it.

Chapter 6: A windy road (not for the faint of heart)

Spinal cord injuries take their toll on many systems in the body, muscles, nerves, bowel, bladder, breathing and a long list of others.  In May 2005, I had a hysterectomy; since I was done having children, it made sense to have one less issue to deal with.  A second major surgery occurred in September 2005, where a loop ileostomy was placed along with a rather new (1980’s) procedure called a Mitrofanoff, which is essentially an easy way to catheterize through a conduit placed in my belly button.  These two surgeries save me a lot of time but the recovery was a bit longer.   Sadly, this was also the year we lost Mark’s mother to a stroke and heart attack so it was a long year.  From 2005, I finished up schooling the children and made some progress of my own. I began learning to walk first with a walker and then with loft strand crutches (more on that later).  It was during this time that my sister and I joined forces and formed a partnership company, designing and programming websites.  I enjoyed it a lot as I love to program.  It lasted for 10 long years but there came a time when we knew it was not feasible to work into our schedules anymore and we just recently dissolved the company.   In May 2012, I had a total abdominal colectomy due to a condition called disuse syndrome.  Basically since the colon wasn’t being used, it increased its production of mucous which was a big disruption to my life.  Shortly after that surgery, we discovered I had a rather large gall stone, with significant pain, but the surgeons were adamant about waiting three months to give my body time to heal a bit, before taking out my gallbladder which was done by a very skilled surgeon as a laparoscopic surgery.  Obviously I have a lot of scar tissue in my abdomen from the multiple surgeries and there was a chance that it would need to be converted to an open surgery.  Praise God it wasn’t.  It was extremely painful, like normal surgeries but the risk for complications were much less.

Chapter 7:  Blessings abound

In 2014, we were blessed by God to be able to buy a larger and newer home.  We spent 19 years in our previous home which was built sometime in the 1940’s, raising our children.  It was small but always enough.  We rearranged frequently as needs changed. I will never regret living in a small house because I feel it keeps families closer.  More time together meant more time to talk and share, more opportunities for teaching life lessons and more time to learn that families are meant to be there for each other, through thick and thin.  But the opportunity to buy a larger home that was only 10 years old was truly a gift from God.  From the first time we saw it, we felt drawn to check it out.  Most people our age were downsizing since our children were almost all adults, but we felt God telling us to look at this home.  We got in touch with the realty company and talked with the financial officer.  She asked if we had a real estate agent and we said no so she promptly offered to see if one was available to see us know.  We were introduced to a very nice, professional and kind man.  After a little small talk, we discovered that not only was he a Realtor, he was a minister and had actually preached in our church on occasion.  Mark and I looked at each other…was this another sign?  He excused himself and returned shortly to ask us if we wanted to go see the house now and to let us know that she had just dropped the price $5000 that morning.  Again…Mark and I exchanged looks.  We went to see the house twice and each time felt God leading us in this direction.  We made an offer and moved in a few months later.  After moving in, we found out from a neighbor that if the house had not sold that week, the seller was going to take it off the market.  I knew 100% that we had made the right, God led choice.  At this point, I was still using my loft strand crutches quite a bit so I was able to do a fair amount of organizing and housework.  It was a joy to have plenty of room for extended family and a big fenced yard for the grandchildren (3 by then).  I began exercising and eating healthy as did the rest of the family.  Life was good and we were so blessed by God that at times I almost felt guilty.

Chapter 8: Yet Another Curve in the Road

Fast forward to April 2015, suddenly my left arm began hurting.  I attempted to rest my shoulder but that didn’t help and the pain progressed to excruciating.  I was prescribed narcotics (which I do not like to take) because the pain was always above a 7.  I found over the years, I could distract pain by keeping busy until it reached a 7 and that is where my arm was on a constant basis.  It radiated down the tract of the C6-7 nerve root and as confirmed by MRI, the nerve was being compressed.  One trial of cortisone was tried with no results.  I was unable to sleep laying down and spend several months sleeping in a recliner.  In July 2015, my neurosurgeon performed a posterior laminectomy and cervical fusion at the C6-7 level.  By far, that was the worst pain I’ve ever experienced after a surgery and I’m known for having a high pain tolerance.  When I returned home, I attempted to use my loft strand crutches around the house as before but had several falls.  The physical therapist replaced the crutches with a walker to no avail as I also had several more falls.  So back to the power wheelchair I went full time.  All my grandkids love getting rides and I more than happy to oblige.  I started intensive therapy for my shoulders because by then both were hurting.  An MRI was done revealing that I had partial thickness tearing of both rotator cuffs, severe degeneration and calcium deposits.  I’m convinced that the cause of this was using the crutches.  All that time I thought I was walking with my legs, when in reality, I was walking with my arms.  I protect my shoulders and arms now to the point where I protect them at all costs.  In late fall of 2015, even though we were blessed to have good insurance, I reactivated my veterans medical benefits.  Initially they declared me catastrophically disabled, meaning no copays for meds or visits.  I had my first annual exam in early 2016. The Minneapolis Spinal Cord Injury and Disorders (SCI/D) unit is second to none.  They have the care of spinal cord injured patients choreographed like a professional dance.  Eventually I was granted a partial service connection and am in the process of attempting to get the spine fully connected. Apparently, we found out after my initial surgery that I was born with a very narrow cervical spinal canal.  That is considered a preexisting condition in the military.  Several specialists as well as myself (from my own research) feel strongly that the work I did on the aircraft aggravated or began the cascade of degeneration at an accelerated pace, leading to where I am today.

Chapter 9: Blessed Again

Between my husband’s insurance and the VA, I am provided with all that I need and more.  The VA helped fund an enlargement to our master bathroom so my power chair could fit.  They also provided me with a lift that I can use independently as well as a Functional Electrical Stimulation (FES) bike to be able to keep my muscles in good shape as well as a bit of a cardiovascular workout. Private insurance provided me with a power wheelchair so I now have a spare.  The VA also has a program to pay for ingress/egress equipment for veterans who require a special way to get into their vehicles(ie.,ramp, lift etc..) and we were fortunate enough to obtain a new van equipped with higher level hand controls. New Toyota I can drive but learned that I can’t over do it.  I recently had to take a 3 mom sabbatical from driving to rest an overused left shoulder.  I steer with my left arm because that has the larger range of motion.  My right arm is weaker and requires a supportive device and driving equipment that requires barely any effort to accelerate or brake. My left eventually felt much better and I learned the importance of balance.  When Mark and I travel together, he will drive, however if I need to go someplace alone, I will drive.  In September of 2017, I was blessed once more by being matched with a service dog named Chase.  ChaseHe is amazingly smart, loving, eager to work and gives me much help and happiness.  We were also able to have a four-foot sidewalk placed on the semi-steep side of house (it’s a walkout rambler) so that provides me outside entrance to the fenced back yard. During inclement weather, a stairlift is available to take me to the basement.  Since using it requires a total of four transfers, I don’t go downstairs a lot unless we have a tornado watch.  The sidewalk was installed this past year’s late fall so before I was able to use it much, we received our Minnesota “Yes this is one that’s going to stick for the winter” snow.  I look forward to using it a lot in the non snowy weather.  I’m going to see if I can teach Chase how open the gate for me.

Chapter 10:  See You Later…Not Goodbye

Sadly, we lost my 90-year-old father early in February of 2018.  Once he started deteriorating, it went very quickly.  We miss him so much but have peace that his soul is with God and no longer has the pain. He came into my life as a step-father when I was 13 but quickly assumed the role of a true father.  He was my mentor, my humorist, my biggest encourager and a very wonderful father!  He had a heart of gold and during the years we had our young children, he would show up out of the blue with a gift that he knew we could really use but couldn’t afford.  He loved children and they loved him.  I will cherish the memories of all the fun times we had when I was young and as an adult with children of my own. There will be a void in my heart until we meet again. We moved my mom and him from their assisted living into our home a couple of weeks before he died.  I made both of them a promise that unless either became violent due to confusion, I would never put them in a nursing home.  There are many things with today’s technology that can help a person with dementia stay safe in a family home.  I believe too many people in America have forgotten that and thus we see fewer multigenerational homes which are such a blessing and learning experience to all.  As with my Dad, my mother has a home with us for as long as she desires even to the very end.

God has placed on my heart to find away to inspire, encourage, show compassion and love those who struggle daily in their lives with the effects of physical, mental or any other issue. This blog is the fruit of that calling.  It’s so comforting to know that He is always there for us – through good times and bad.  I will praise Him through both!

Until I revise this page, here are some posts to keep you updated!

Chronic SCI Complications but Grace got me!

Another Awesome Day – Thank you God!

Myofascial Release Therapy – First Experience

Acupuncture – Another First

Yet Another Procedure – Fear Doesn’t Stand a Chance!

Greater is He!!

Comments? I’d love to hear from you ❤