By Donna Lowich
"The Christmas tree is soooo much bigger than last year!" Jeffrey sing-songed in five-year-old fashion, dancing around the beautifully wrapped gifts. He turned to me, his chocolate-brown eyes reflecting the tree's blinking lights. "Isn't the tree much bigger and more beautiful than last year's, Mommy?"
"It is a much bigger tree than last year's tree," I agreed. At least that's what I'd been told. Christmas 1985 was not even a memory for me. I had undergone two spinal cord surgeries that year, and I didn't have any recollections of the holiday.
A table-top tree was all my husband, Walter, had been able to manage. He tried to make it festive, but it had been difficult for both of them. But this year I was home, and we anticipated a festive Christmas for 1986.
After months in the hospital and rehab center, I had looked forward to life-like-it-used-to-be. Instead, I encountered reality and disappointment -- in myself. While I was still making progress, it was slow, and I was not nearly where I expected to be in my recovery. I wished things could be different. I wished everything could be as it once was.
With these thoughts in mind, I rose slowly from my chair and made my way to the stairs. Jeffrey stopped singing, and I knew he was watching me as I struggled to climb the steps. I heard quick little running steps, and he grabbed my hand to help.
He looked up and said in all solemnity, "Sometimes I wish it was me."
Gripped by the power of his words, I hugged him tightly, burying my face in his wavy brown hair, squeezing my eyes shut to fight back the tears.
"Oh, no, Jeffrey, no!" I interrupted.
"But, if it was me," he insisted, "you could carry me up the stairs." His eyes brimmed with tears as he looked down at the floor. "I can't carry you."
His poignant, generous words jolted me like nothing else could.
In an instant, my introspective melancholy dissolved to a deep sense of gratitude and love. No, things were not the same as they once were -- maybe they never would be. But now I realized how unimportant that truly was. Especially in light of Jeffrey's unselfish thoughts. Finally I felt at peace.
I looked at the glowing Christmas tree. "You know, Jeffrey, I believe you're right. This year's tree is bigger and more beautiful than any other."
Today, Donna continues her recovery because making one's way back from a spinal cord injury is a life long process. You keep moving forward, one step at a time.
This story reminds us all that our commitment to finding cures for spinal cord injury and improving the lives of people living with paralysis affects not just the person afflicted, but all the people who love and care for him or her.
This story has been published in "Chicken Soup for the Mother of Preschooler's Soul: Stories to Refresh the Soul and Rekindle the Spirit of Moms of Little Ones.."
Tell us your story
Telling your story is one way to let anyone touched by paralysis know that they are not alone. We've created a place where you can share your journey for your benefit, and the benefit of others. Your story matters. Share it.
Editor's note: Donna Lowich is an Information Specialist in the Foundation's Paralysis Resource Center. Donna was spinal cord injured over twenty years ago and has since dedicated her life to helping others living with paralysis.
Arkansas Spinal Cord CommissionThe mission of the Arkansas Spinal Cord Commission is to administer a statewide program to identify and meet the unique and lifelong needs of people with spinal cord disabilities in the state.
The American Camping AssociationAccredits camping facilities, including dozens across the U.S. that cater to kids with paralysis, to assure a safe and healthy experience. Click above to locate a camp.
CareCure CommunityCareCure Community features a SpinalNurse bulletin board with informed comments on matters of the bowel, and all issues of paralysis.
Canadian & American Spinal Research OrganizationPromotes and supports funding research to ultimately find a cure for paralysis. Also publishes journal of latest research they fund. Call (800) 361-4004 or use the link above.
Canadian Paraplegic AssociationAssists people with spinal cord injuries and other disabilities to achieve individuality, self-reliance and full community participation. Call (613) 723-1033 or use the link above.
Children With DisabilitiesOffers information about advocacy, education, employment, health, housing, recreation, technical assistance, and transportation covering a broad array of developmental, physical, and emotional disabilities.
Craig HospitalWith funding from the US Department of Education's National Institute on Disability & Rehabilitation Research, has developed educational materials to help people with spinal cord injuries live in the community maintain their health. Topics include skin care, exercise, heart disease, weight control, alcohol abuse and conditions related to the aging body. Use the link above and click on SCI Health and Wellness.
The Council for Exceptional ChildrenDedicated to improving educational outcomes for individuals with exceptionalities, students with disabilities, and/or the gifted.
Children's Neurobiological SolutionsChildren's Neurobiological Solutions, Inc. (CNS) is a national, non-profit organization supporting collaborative research to advance treatments and therapies for children with neurodevelopmental abnormalities, birth injuries to the nervous system, and related neurological problems. CNS offers families and health care providers information and educational resources.
Center for Research on Women with Disabilities (CROWD)Dept of Physical Medicine and Rehab Services at Baylor College of Medicine.
Exceptional ParentThe magazine often runs a column on dentistry for people with disabilities.
DREAMMS for KidsDevelopmental Research for the Effective Advancement of Memory and Motor Skills specializes in assistive technology for students and youth with special needs in schools, homes, and the community.
Determined 2 HealProvides helpful information for the newly spinal cord injured.
The Fathers NetworkSupports men who have children with special needs through support and mentoring programs, technical assistance, national conferences and information resources.
Internet Resources for Special ChildrenProvides information to parents, family members, caregivers, friends, educators, and medical professionals who provide for children with disabilities and other health related disorders.
Getting Benefits for KidsThis link illustrates the kinds of Social Security and Supplemental Security Income (SSI) benefits a child with a disability might be eligible for and explains how we evaluate disability claims for children.
Indian Health ServiceU.S. Dept. of Health & Human Services.
FacingDisability.comFacing Disability is a web resource with more than 1,000 videos drawn from interviews of people with spinal cord injuries, their families, caregivers and experts. I know that this is a lot to ask, but we'd be so grateful for your help. I'm looking forward to discussing this link with you, and to answering any questions you may have.
Kosair Charities Center for Pediatric NeuroRecovery at the University of LouisvilleThe Kosair Charities Center for Pediatric NeuroRecovery provides activity-based therapies to promote recovery from neurologic injury in children; conducts research to enhance recovery; and trains families, practitioners and scientists to maximize recovery and improve the quality of life for children and their families. In short, we are here to help kids kick paralysis and through science have every reason to hope.
Model Systems CentersA federally funded program of 14 specialty medical and/or rehabilitation centers across the US. The SCI Care System collects and submits acute, rehabilitation and follow-up (annual, long-term post-discharge) data on SCI patients who received care in the these centers following injury.
The Miami Project to Cure ParalysisThe Miami Project to Cure Paralysis has studied functional electrical systems for exercise.
Mobile WomenArticles, resources, online forum for women with disabilities especially wheelchair users.
KidsHealthOffers reliable health information about children from before birth through adolescence, with separate areas for kids, teens, and parents.
Kids MoveDevoted to pediatric movement disorders with up-to-date information about the recognition, assessment, treatment, and support.
National Information Center for Children and Youth with Disabilities (NICHCY)Provides information on disabilities and disability-related issues for families, educators, and other professionals; special focus is children and youth (birth to age 22).
The National Spinal Cord Injury Statistical Center (NSCISC)NSCISC supervises and directs the collection, management and analysis of the world's largest spinal cord injury database. Headquartered at the University of Alabama, Birmingham.
National Spinal Cord Injury Association (NSCIA)At NSCIA, we educate and empower survivors of spinal cord injury and disease to achieve and maintain the highest levels of independence, health and personal fulfillment. We fulfill this mission by providing an innovative Peer Support Network and by raising awareness about spinal cord injury and disease through education.
New York Online Access to Health (N.O.A.H)Offers information and links related to spinal cord and head injury treatment, rehabilitation, and children. Materials in Spanish.
Neuroscience for KidsOffers an understandable look at the segments of the spinal cord; from University of Washington.
The Office of Special Education and Rehabilitative ServicesThe Office of Special Education and Rehabilitative Services (OSERS) is committed to improving results and outcomes for people with disabilities of all ages.
Our-KidsAn online family of parents, caregivers and others working with children with physical and/or mental disabilities.
Paralyzed Veterans of America, in support of The Consortium for Spinal Cord Medicine, offers authoritative clinical practice guidelines for bladder management. Consumer guides are available to download.
Parents On WheelsSite is dedicated to parents who use wheelchairs.
SpineUniverseAt SpineUniverse our goal is to help patients and their families understand their back or neck problems. In clear, straightforward language we aim to explain what causes spinal problems and how they can be treated. We are committed to ensure that all of the information we present is trustworthy and of the highest quality.
Spinal Cord Injury Information NetworkThe Spinal Cord Injury Information Center features clinical information about bowel management and all other medical issues of paralysis.
The Shriners HospitalsThe Shriners have three facilities in the U.S. to provide expert, no-cost care to children under 18 with spinal cord injuries.
Through the Looking GlassThe purpose of the National Parent-to-Parent Network at Through the Looking Glass is to connect parents, as well as those who are considering becoming parents, with others who may have shared similar experiences or faced common barriers as parents with disabilities.
United Spinal AssociationOur mission is to improve the quality of life of all Americans living with spinal cord injuries and disorders (SCI/D), including multiple sclerosis, spina bifida, Lou Gehrig’s Disease (ALS), and post polio.
U.S. Department of Veterans Affairs Fact Sheet: VA and Spinal Cord InjuryOf the more than 250,000 Americans with serious spinal cord injuries and disorders, about 42,000 are veterans eligible for medical care and other benefits from the Department of Veterans Affairs (VA).
Paralysis Resource Center The Reeve Foundation Paralysis Resource Center Information Specialists are reachable business weekdays, Monday through Friday, toll-free at 800-539-7309 from 9:00 am to 5:00 pm ET. You may also schedule a call or send a message online.
Reeve Foundation Online Paralysis Community Connecting people living with paralysis, families, friends and caregivers so we can share support, experience, knowledge, and hope.
Quality of Life Grants DatabaseFind resources within the PRC Quality of Life Grants Database. Search by Zip Code, State or an Entire Category.
Library Books and VideosFind resources within the PRC library catalog.
This FREE 442 page book is a comprehensive information tool for individuals living with paralysis and for their caregivers. Request or download your copy now!
Check out programs in your area on our one-of-a kind online searchable Quality of Life program database. You can search by location or topic. GO