Having four visiting family members, the wife was very busy, so I offered to go to the store for her to get some needed items, which included light bulbs, paper towels, trash bags, detergent, and Clorox. So off I went.
I scurried around the store, gathered up my goodies, and headed for the checkout counter, only to be blocked in the narrow aisle by a young man who appeared to be about sixteen-years-old. I wasn't in a hurry, so I patiently waited for the boy to realize that I was there. This was when he waved his hands excitedly in the air and declared in a loud voice, "Mommy, I'm over here."
It was obvious now, he was mentally challenged, and also startled as he turned and saw me standing so close to him, waiting to squeeze by. His eyes widened and surprise exploded on his face as I said, "Hey Buddy, what's your name?"
"My name is Denny and I'm shopping with my mother," he responded proudly. "Wow," I said, "that's a cool name; I wish my name was Denny, but my name is Steve."
"Steve, like Stevarino?" he asked.
"Yes," I answered. "How old are you Denny?"
"How old am I now, Mommy?" he asked his mother as she slowly came over from the next aisle.. "You're fifteen-years-old Denny; now be a good boy and let the man pass by."
I acknowledged her and continued to talk to Denny for several more minutes about summer, bicycles, and school. I watched his brown eyes dance with excitement because he was the center of someone's attention. He then abruptly turned and headed toward the toy section.
Denny's mom had a puzzled look on her face and thanked me for taking the time to talk with her son. She told me that most people wouldn't even look at him, much less talk to him. I told her that it was my pleasure and then I said something I have no idea where it came from, other than by the prompting of the Holy Spirit.
I told her that there are plenty of red, yellow, and pink roses in God's Garden; however, "Blue Roses" are very rare and should be appreciated for their beauty and distinctiveness. You see, Denny is a Blue Rose and if someone doesn't stop and smell that rose with their heart and touch that rose with their kindness, then they've missed a blessing from God.
She was silent for a second, then with a tear in her eye she asked, "Who are you?"
Without thinking I said, "Oh, I'm probably just a dandelion but I sure love living in God's garden."
She reached out, squeezed my hand, and said, "God bless you!" and then I had tears in my eyes.
May I suggest that the next time you see a BLUE ROSE, don't turn your head and walk off. Take the time to smile and say Hello. Why? Because, just think how this mother or father have felt so many times...how so many folks have rejected their child. This could be your child, grandchild, niece, or nephew. What a difference a moment can mean to that person or their family.
From an old dandelion!
Live simply. Love generously. Care deeply. Speak kindly. Leave the rest to God.
"People will forget what you said, People will forget what you did, but people will never forget how you made them feel."
It is no secret that marriages involving a special needs child are under an additional amount of stress but, just like the way pressure creates diamonds out of coal, that added stress can make a marriage tighter, strong and more resilient going into the future. If marriage were a sport, then special needs marriages are performing at the Olympic level. The challenges are hard but the glory is immense.
With all that in mind, here are a few articles (and one or two of my own) that have been an encouragement to me. I hope they are an encouragement to you as well:
Abilities Expo For the last 30 years, Abilities Expo has been the one show dedicated to educating and improving the lives of Americans with disabilities, senior citizens, families, caregivers, healthcare professionals and professional therapists. It has been the nation’s foremost event for companies to demonstrate their products and services to the largest community of end-users and industry professionals.
Imagine having access to the most valuable resources and innovative products available to improve your independence and achieve your goals. United Spinal Association’s Independence Expo offers just that–– all under one roof and free for you to explore!
Spina Bifida Association of America National Conference Through exceptional medical sessions, practical workshops, and memorable social events, the SBA National Conference is an exciting and informative event that has truly earned its place as the world’s premier conference serving the Spina Bifida community.
When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum, the Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It’s all very exciting.
After several months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland!” “Holland?” you say. “What do you mean, Holland? I signed up for Italy. I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It’s just a different place. So, you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place.
It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around. You begin to notice that Holland has windmills. Holland has tulips. And Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that experience will never, ever, ever, go away.
The loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.
If you are a parent facing the prospect of raising a child with SB for the first time, it is natural for you to feel uninformed, disconnected and isolated. But things don't have to stay that way.
By FAR the absolute BEST source of information and encouragement to our family has come from other SB families. TRUST ME, these people know their stuff and they want to help.
http://youtu.be/B9RZ4V34WhY
Here are a few places you can get connected:
BLOGS IN GENERAL
As you begin to connect with other SB families, you will find that many of them have family blogs in which they share their journey. My personal blog is HERE.
BACKBONES
Connecting people with spinal cord injury and their families is what we do. Through one-on-one pair ups or an event near you, BACKBONES makes it easy to meet others with similar background, injury and interests.
Benotafraid.net is an online outreach to parents who have received a poor or difficult prenatal diagnosis. The family stories, articles, and links within this site are presented as a resource for those who may have been asked to choose between terminating a pregnancy or continuing on despite the diagnosis. The benotafraid.net families faced the same decision and chose not to terminate. By sharing our experiences, we hope to offer encouragement to those who may be afraid to continue on.
We are mothers of daughters who experience social, sensory, cognitive, and physical differences. The organization was established in the summer of 2011. We are based in San Diego.
Our children are special and beautiful and sometimes what they have to go through is scary. They are our inspiration and our happiness. Their appointments and medical issues can be overwhelming, and although every child is different, we have a lot in common. Come and ease your mind at similar experiences shared by other Moms of these exceptional children.
CHRISTIAN MOMMAS OF KIDS WITH SB
A place to lament, vent, discuss, ask questions, post prayer requests and encourage one another in the Word as we travel on this road of raising children with SB. I chose the mountain looking icon because it seems to mimic the journey....up and down, up and down. Yet with friends by our side to encourage us along the adventure is that much sweeter and the difficult parts that much easier.
Another bulliten board where expectant parents as well as parents of young children with SB can go for parent-to-parent support, encouragement and information
DISABLED AND ABLE BODY UNITED . . . .
This is a group for both the able body and disabled united with each other. Maybe if more people that are Able body knows more about the disabled and how we live our daily life,Were really no different,we want the same as the able body person,We all want to be respected,and be treated no different then any body else...and also to let you know,in time from some kind of accident or maybe have a child with a disability,You also maybe become disabled...
Disaboom is a website dedicated to connecting people with disabilities.
FACING DISABILITY
FacingDisability was specifically created to connect families who suddenly have to deal with a spinal cord injury with other people like them. Our website has more than 1,000 videos of family members answering real-life questions about how they cope with a spinal cord injury. It’s a first-of-its-kind Internet-based effort to collect life experiences surrounding spinal cord injuries and bring them to the world.
HEAD NORTH
HeadNorth meets the transitional needs of SCI survivors, from recovery to rehabilitation to the reintegration back into an active lifestyle. HELP is provided through two core programs; financial assistance and peer mentoring. Through each program, resources, Peer Support and financial assistance helps the injured individual and their families as they face the daily challenges of living with a SCI and paralysis.
This is a Facebook Group for people who use wheelchairs
HAND TO HOLD
Hand to Hold, a 501(c) nonprofit, provides comprehensive navigation resources and support programs to parents of preemies, babies born with special health care needs and those who have experienced a loss due to these or other complications.
LIFE AFTER SPINAL CORD INJURY
Facebook: Life After Spinal Cord Injury [SCI] is a motivational program for youth with disabilities, rehabilitation programs, medical education seminars and other community events. Please learn more at http://www.uromed.com/Company/BertsStory
THE MOBILITY PROJECT
Welcome to The Mobility Project — a new resource created especially for people who use wheelchairs and other assistive technology for mobility. The Mobility Project’s mission is to help re-educate people on what it’s really like to live with a disability while making it a little easier for you to get things done in the wheeled world.
This is a collection of inspirational poetry and quotes that have been collected on this website.
SHINE
Europe’s largest organisation dedicated to supporting individuals and families as they face the challenges arising from spina bifida and hydrocephalus.
This is a section of this website where I have compiled articles from others as well as some thoughts of my own on how disability effects individuals as well as marriages.
The Spina Bifida Association of America is a national organization with local chapters throughout the US. Check their map to find the chapter in your area.
This is a Facebook Group for those who have undergone fetal surgery for spina bifida, or are considering it... to offer support, answer questions, or just connect!
SB Kids is a community of over 900 moms (and a handful of dads) on Babycenter.com. They can answer every question, relate to every emotion and want to celebrate your every triumph.
SB-List is a discussion list for parents of children with spina bifida. The list focuses on information sharing and support. Our children range in age from infants not yet born to 30 and 40 year olds. SB-List has been hosted by the Waisman Center since 1996. It was the first Internet discussion list specifically for parents of children with spina bifida.
SPINA BIFIDA TRACH/VENT KIDS
This is a unique group for families/people with Spina Bifida and tracheostomies and/or ventilators. Please feel free to add members that might fit.
Facebook: Our page has been put together to show what is possible and what can be accomplished with the help of others that have dedicated their life to helping people with spinal injury achieve whatever their goals or dreams may be….
There are many SB-related goups on Yahoo - just go to Yahoo Groups and type in "Spina Bifida" in the search bar. One of the main SB Groups is Spina Bifida Central.
