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Spinal Cord Injury Paralysis Resource Center

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Jeffrey's Room Full of Memories

By Donna Lowich

The Lowich Family

The Lowich Family

The door to my son's room is open, and seems to be beckoning to me. His room has been closed most of the time since we dropped him off at college. He's graduated now, and received a second bachelor's degree at the University of Louisville. It was equally difficult to see him leave the second time for college, as it was the first time around; it never does get any easier. An empty house is an empty house, after all.

In June 1986, I returned home from an extended hospitalization: six weeks in the hospital after two spinal cord surgeries along with some complications, followed by five months in a rehab center.

Finally, I was home! No one was happier than Jeffrey, who was not quite five at the time. One morning, as I was getting ready to go downstairs and prepare for yet another day of physical therapy, I heard Jeff in his room. I guess he must have heard me, too, because he called out, "Mommy! How do you spell 'special'?"

"S-P-E-C-I-A-L." Puzzled, I asked, "Why do you want to know?"

"Oh, no reason," he answered. I wasn't surprised; asking Jeffrey any question about what he was doing or why he was doing something almost always required him to respond with either a singing reply of, "Nothing!" or "No reason."

I was ready to go downstairs, and went out into the hallway. Jeff had already gone downstairs, so I peeked into his room. On his little chalkboard and desk, he left a message with his magnetic letters: MY MOM IS SPECIAL. The truth of the matter is that my son is the special one; he had now prepared me as only he could with the energy to face the therapy and other challenges that I faced that day, and for the many days that followed.

I stand by the doorway and lean by the doorjamb as I survey the room. My eyes scan the sports posters and memorabilia, and even the pages of newspaper that Jeff had torn out and hung on the walls in his earlier years. It's quiet in here now, in contrast to many occasions in the past, but it comes alive again for me at this moment. Voices from the past seem to envelop me. The memories held in this room now seem to come to life, they seem so real to me.

Jeffrey and his Dad, Walter

Jeffrey and his Dad, Walter

I remembered the day when my husband, Walter, and I went in to tell him that kindergarten was cancelled: it was his very first Snow Day! But instead of joy, Jeff stood on his bed, with his little hands clenched in despair: "No! I have too much work to do! How will I get all my work done?"

I heard Walter carrying a squiggling, wiggling, giggling Jeffrey upstairs, with the nightly admonition, "To bed, Fred!"

Then there are the memories of hearing little-boy giggles as he made whispered plans with his cousins, Kenny and Jonathan, as they settled in for a sleepover weekend.

Jeffrey used to watch the physical and occupational therapists as they worked with me each day. Once they left, he would work with me on the same exercises. He worked hard, stretching my hands and watching as I did my floor exercises designed to strengthen my trunk and legs. Then he would say, "You did great today, Mom! I think you deserve an 'A'!"

I smile to myself as the memories flooded into my mind as I relive the happy times when my son was growing up to be the wonderful man he is today; he's married now and has a beautiful baby of his own.

I close the door to his room to safeguard all those memories against the ravages of time, for as long as I have these memories, my house will never be empty, not really empty.

A Reeve Foundation Fact Sheet on Religion and People with Disabilities (PDF)

A Reeve Foundation Fact Sheet on Adjustment to SCI (PDF)

A Reeve Foundation Fact Sheet on Aging with SCI (PDF)

A Reeve Foundation Fact Sheet on Children with Disabilities (PDF)

A Reeve Foundation Fact Sheet on Parenting with a Disability (PDF)

A Reeve Foundation Fact Sheet on SCI Autobiogs or Biogs (PDF)

A Reeve Foundation Fact Sheet on SCI Chat Rooms (PDF)

A Reeve Foundation Fact Sheet on SCI Research (PDF)

A Reeve Foundation Fact Sheet on SCI Tutorial 101 (PDF)

A Reeve Foundation Fact Sheet on SCI Videos (PDF)

A Reeve Foundation Fact Sheet on Brain and Spinal Cord Tumors (PDF)

A Reeve Foundation Fact Sheet on Deep Vein Thrombosis (PDF)

A Reeve Foundation Fact Sheet on Mindfullness (PDF)

A Reeve Foundation Fact Sheet on New Injury Top 10 Questions (PDF)

A Reeve Foundation Fact Sheet on Umbilical Cord Blood Banking (PDF)

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.

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 Resource Center for Parents with DisabilitiesA deep resource on childbirth and parenting, adaptive equipment for childcare, networking and support groups

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 (PVA): Spinal Cord InjuryFor more detailed information on the clinical practice guidelines on respiratory management with spinal cord injury you can request booklets from the Paralyzed Veterans of America. These booklets also provide guidelines on proper weaning from a ventilator.

Parenting with Disabilities OnlineProvides information, support and resources to parents with disabilities.

Parents On WheelsSite is dedicated to parents who use wheelchairs.

Parents with Disabilities OnlineProvide information and resources to parents with disabilities.

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.

State Respite CoalitionsThe Chapel Hill Training-Outreach Project was established in 1969 with funding from the Federal government as part of our nation's earliest attempts to provide educational services to young children with disabilities.

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).

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.

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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 Eastern U.S. Time. International callers use 973-467-8270. You may also schedule a call or send a message online.

The information provided in the Paralysis Resource Center was supported by Cooperative Agreement number 1U59DD000838-01 from the Centers for Disease Control and Prevention (CDC). Its contents are solely the responsibility of the Reeve Foundation and do not necessarily represent the official views of the CDC.