Crazy to Most, Normal to Us

By Emily Ann Hupe

When I walked into the hospital for my scheduled c-section on November 17, 2004, I had no idea that those would be the last steps that I would ever take, as an able bodied mom. A rare complication during my procedure, caused a bruise on my spinal cord at T 11-12. I had no feeling from the hips down on my right side, some feeling on the left and no bowel or bladder control. I was now a full-time wheelchair user. Waiting at home for me, were my 6 other children ages: 11, 9, 7, 5, 4 and 2. I had no idea that cold November morning, as I stared down at the perfect face of my youngest child that the next 12 years would nearly destroy our beautiful little family.

I would have over 10 surgeries numerous complications and procedures over the next 12 years. The first 2 years, I lived in constant and excruciating pain. There were countless doctor appointments and procedures. I was in a constant state of "preparing for" or "healing from" something. During this time, I was desperately trying to "mom" from what I came to refer to as "the worst seat in the house". Life for me was measured in hours between pain medication and how many good days that I had in between surgeries or complications. We have home schooled all of our children, so that further complicated my situation. We spent most days in my room and bed, during those first 2 years.
Dinner time!
Slowly we settled into a new normal. My husband is self employed so he was home most days. He would get up at 4:00 AM, work until 8:00 AM in his office and then help get the kids and me up for the day. He would then be Mr. Mom for the day and return to his office after dinner until the bedtime routines began. Often times, he would work late into the night as well. We did not have family close by and we lived 45 minutes from most of our friends in town. People pitched in, at times, and were amazing. However, the reality was that everyone was busy with their own lives and we were on our own most of the time.

 I went from being the mom that did everything to the mom that was stuck in bed or wheelchair and I felt completely useless. Further complicating my situation was that since my husband is self employed, our insurance was not that good. I never went to rehab or had any real "training" on how to live as a wheelchair user. Other than a lesson on catheterization and bowel programs, we were left to figure it out alone. I was totally isolated in this new world. We would go through all of our savings and lose our home. In 2010, we had to move into our RV where we lived for a year. The financial consequences of my injury were devastating.

My kids were amazing, it was as if nothing had changed. They had mom at home and that was all they cared about at the time. As they got older, they missed our old and much more active lifestyle, but they never complained. Our life had a rhythm, if mom was well, we could have dad drive us out to an event or errands. If mom had surgery, that meant they were off to stay with friends and then life ran from mom's bed until she was well again. What looked crazy to other families was "normal" to us.

After 5 years, I was able to drive again. I was terrified to drive with my kids in the car. However, each trip I went a little further and my confidence grew. We drove a 15 passenger van, so the kids would push me to the driver seat, help to haul me into the driver's seat and put the chair in the back. In the 12 years since my injury, I have never had an accessible vehicle, so I am always with at least one other person to get my chair in and out of the vehicle. If I have somewhere to go that is just for me, one of the kids brings a book and waits for me.

The hardest part about the last 12 years as a wheeler mom has been the surgeries and many health complications that I have suffered. It seems like our family will get a routine going and suddenly we are sent off schedule again by another recovery. There has also been  the constant worry about how all of this was going to impact the kids. They were all so young at the time of my injury, that only my oldest has vague memories of me walking. When the kids would see pictures of me standing, they would ask if daddy was behind me "holding me up". It is also a challenge that the day of my injury is also my son's birthday. One day recently, he asked me if a genie gave me a choice to walk again or have him which would I choose. I said I would not trade him for anything. He said he would pick walking again. My heart broke. These are the moments that are the hardest to get through.

The constant question that my kids endure is: "What is it like to have a mom in a wheelchair?" They always answer the same way, I am "just mom". To them it is normal, they tell me that it has not bothered them at all. This is bittersweet to me. While I love hearing that they are all okay, I know that our life would look very different had I walked and not rolled home from the hospital that November day. There would have been college funds and a retirement fund. There would have been less missed activities for the kids and a mom and dad that were a lot less stressed out. The kids have fears and insecurities that go along with always worrying about their mom. These are the scars that haunt me, that cause me guilt.
My children are now 23, 22, 20, 18 ,16 ,14 and 12. They are self reliant and selfless. They have been through a storm and they are stronger because of it. They live life more fully, I think because of my injury. They appreciate life's beautiful moments and cling tightly to the good times. We are involved in our local disabled community and still live a life that looks crazy to most and normal to us. I think less and less about what life might have looked like if I was still walking. Seeing how my children have thrived and grown despite all we have been through, has helped my continued recovery so much. During those early, dark years in the beginning, I would never have imagined that I would have the life I have now.  I am an active and full-time mom.  It is not the life I planned, but I now feel like I have the BEST seat in the house!

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