Please know that I believe in God, Heaven and Jesus…I’m a Christian. I believe that someday we will ALL be in a better place. I find peace knowing that the child I love and cared for with every ounce of my being is safe beside God, free of her broken body and frequent seizures…running, jumping, singing…
However as a parent of a child with special needs I know that Samantha had a pretty wonderful life, considering. She experienced life, she rarely sat on the sidelines while life passed by, WE made that happen. We loved her more than words could express. She went everywhere with us; vacations, festivals, fairs, parks, bouncy houses, birthday parties, movie theatres, Church as well as the mundane like grocery shopping, trips to the mall, restaurants, and trips to the hardware store. She did arts and crafts at home as well as helped with baking. Samantha was included in all family traditions like carving a pumpkin, decorating Easter Eggs, being kissed by a leprechaun and making Christmas ornaments.
She shared her bedroom with her little sister with matching comforters and fun pillows, a special doll, flowers painted on the walls and shelves filled with special mementos collected throughout her life. Her wheelchair was hot pink and personalized with a stuffed flower and a Vidia doll. She was Included in pictures all around the house and in countless scrapbooks and the yearly kids holiday photo shoot. Samantha was dressed like any other girly girl her age with pretty hair accessories, matching earrings and stylish clothes and shoes.
Samantha had her fair share of loving nicknames; Fussy butt, Pumpkin, Monster, Sammy Sam, Sam Sam and Wheels were some as well as Samantha Klee or Miss Samantha when she was being scolded…yes scolded, after all she was a child and needed discipline at times too.
I could go on and on about all the things she taught me and others about ourselves. The significant impact she had on the character of the kids who have been in my home daycare. Not to mention the countless adults whose views on things were changed the very first time they met her.
As her parents we advocated almost daily to ensure a free and appropriate education. We battled with Doctors who generally wrote her off because she can’t be fixed like the child in the next room. We researched medical articles, pharmaceutical reference books, human biology books, special diets, and environmental irritants. We had to learn medical terminology and study every procedure and test from beginning to end all to ensure the best quality of life possible. We challenged her when others settled.
Some of her favorite past times were snuggling with her siblings watching movies, listening to her sister put on a dancing and singing show for her, listening to her brother chit chat with her while he parked his cars around her body, being licked like crazy by her puppy, the countless books that were read to her, being told secrets by her little sister as they sat together in her wheelchair, being picked on by Daddy as Daddy’s do so well, and curled up on the couch with Mommy for a couple hours every night being showered with kisses and words of love.
So I ask you the next time you spend time around a child with special needs please don’t feel sorry for them or feel pity. Please don’t assume there life on earth was less than a life should be. Know that that child is a CHILD. Know that most children with special needs only know THEIR life and even with all the struggles that may come with it they LOVE that life…What God wants for us all.