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Steve’s Return Home – by Myoko April 10, 2013

Steve & Myoko

Returning home is the love story of healing, commitment and hard work. As Steve’s body recovered physically in the hospital, so did our relationship that had been strained to the point of divorce.  We sustained each other during the most terrifying times of this journey and have been strengthened and comforted by our restored love and commitment. We are showing our children that we can problem solve and live a fulfilling life despite obstacles and detours that we face. Daily we acknowledge the blessing of having our family back together, express our deep love for one another and work as a team to create our new life.

The return home happened on November 9 and the first weeks were spent celebrating that huge milestone, Thanksgiving, both of our birthdays, the tooth fairy’s first visit and Christmas. Between all of the festivities we were busy adjusting to life together again under one roof, moving my things in load by load and managing the numerous chores and tasks that were done by a team of caregivers at the hospital.  We could not have managed any of this alone and particularly not without the never-ending support of Barbara and Ralph.  Their support comes daily and in as many forms as we have needs:  a ride to school every single morning for the girls, housekeeping, groceries, special school projects, advice, running errands, skating lessons for the girls, etc. My gratitude is deep for the list of help that goes on and on.

photo[1]Currently Steve attends physical therapy three times a week with the goal of keeping his body in the most optimum shape possible.  His visits include exercises, use of a standing frame and a functional electrical stimulation bike.   Physical therapy is costly and is not scheduled as much as is recommended (daily) for maximum recovery.  We hope to raise money that will allow Steve to have his own equipment at home.  To prevent osteoporosis Steve should spend two hours a day in a weight bearing standing position. It’s also good for his heart and circulation not to mention he enjoys the change of position and it’s a requirement for the clinical trial he hopes to participate in.  He is in need of a piece of equipment like this for maximum recovery: http://www.easystand.com.  We’ve learned recently that the best long term therapy to keep Steve’s body functioning at it’s highest level is the use of a functional electrical stimulation bike.  It’s recommended that Steve bike an hour a day, currently he gets an hour week. “Researchers have noted that this form of FES provides real aerobic exercise in people who otherwise can’t move on their own; it boosts heart and lung function, improves strength and circulation, builds muscle mass, even in people with high quadriplegia.”  http://www.christopherreeves.org

DSCN0081After just a few months at home he is driving himself to Albuquerque for appointments and to visit with friends. I watched as he persevered and solved each little challenge that came up as he learned how to transfer from the wheelchair into the car, use hand controls instead of foot pedals, figure out how to get the wheel chair in and out of the car and navigate all kinds of wheelchair unfriendly terrain out in the world.  I know part of the drive to drive is for independence but it’s also fueled by his commitment to relieve me of some of my responsibilities. Steve has started to pick the girls up after school sometimes, giving me a break from the end of the day rush and a huge highlight for the girls who always persuade their dad to take them to the park or to ride bikes on our street.

I am filled with joy to see my girls eating up that special energy and attention that only comes from their dad.  His light and fun-loving spirit shines bright every day as he plays in their world and nurtures their ideas and feelings.  Steve has shown them that a wheelchair doesn’t prohibit a game of chase and tickle, hide and seek or teaching someone how to ride a bike.  The girls are more confident than ever and are thriving in everything they do.  I feel blessed to have a union that is stronger than ever and happy to love and laugh together as a family.

DSCN0090Even though Steve has made amazing gains in a year there are still complications to diagnose and treat with frequent trips to doctors and specialists. Daily living will always require significantly more work than for an able bodied person and routines will always prevent Steve from enjoying a full night of sleep and some of the things he enjoys. Questions continue to develop and uncertainty is still present. There is much to learn about living with Spinal Cord Injury.  The bills from the past year and last week arrive daily. Steve spends hours researching questions and medications, ordering supplies, and navigating medical bills and insurance.  He works as hard as ever maintaining his life and supporting our family. It is my hope that our community will continue to support his recovery through positive thoughts and contributions towards equipment that will ensure that he lives the healthiest, most fulfilling life possible.

With Love & Gratitude,DSCN0077

Myoko