From a distance I heard dance music and I could see some children jumping around in a tent while the balloon crowns they wore on their heads bounced up and down. I immediately knew this was where we were supposed to be. My heart smiled and I thought, “It’s good to be different.” Yet, at the same time I didn’t feel like we were different at all. As we entered the area, parents and children we knew greeted us and any screaming, hand flapping or pacing behaviors someone else might find “odd” or “abnormal” or even upsetting were perfectly “normal” and fascinating to me.
Sam was nervous when we first arrived. She sat in her wheelchair stroller and held on tightly to John’s shirt and hand. She even frowned a little but as she began to adjust to this new environment, where the mixed smells of barbecue, popcorn, funnel cakes, cinnamon cashews, corn dogs, hot dogs, and hamburgers filled the air, she noticed familiar, loving friends and realized she was safe. It isn’t always easy taking Sam to new places. Sometimes she experiences sensory overload and she will begin to scream, cry or run away and hide. Other times she is okay. Each time I expose her to a new experience or environment I never know what to expect and I am always praying for the best but I am also prepared for the worst. This is all I can do. Sam is who she is and she will do what she does. She is full of surprises and this makes life…interesting.
There are days, weeks, even months when it seems like nothing new and exciting is happening and Sam’s progress is slow. Sam is 11 years old. She was born with a chromosome 18 abnormality called distal 18q-. One in 40,000 Americans are born with distal 18q-, which means that less than 7,800 Americans are affected by this disorder. As a result, Sam was born with a wide right unilateral cleft lip & complete cleft palate, severe hearing impairment, intellectual and developmental delays, ADHD, mood disorder, delayed myelination and autism. When I first found out about Sam and her distal 18q- I was distraught. I wondered how and why and I wondered what I had done to make this happen. I wanted to understand why this had happened to MY little girl. I wondered why SHE was chosen to endure all of these challenges. I wondered why SHE wasn’t meant to be like everyone else. It was unfair. I had always imagined my little girl as a scholar, a ballerina, or an athlete. I dreamed of teaching her how to color, draw, paint and create arts and crafts. I dreamed of swimming, walking, running and riding bikes with her. I imagined her playing dolls and playing dress-up. I dreamed of shopping with her, taking her to the movies, taking her to Disneyland, riding the teacups, the roller coasters, and doing all the things I did and learned how to do when I was a child. I dreamed of teaching her how to cook like my mom had taught me. I dreamed of her first talent show, her first dance, her senior prom and the day John and I would send her off to college. I wondered whom and what would she grow up to be, but my dreams had to change.
Now, I believed I could only dream that Sam would hear my voice, make eye contact, sit up, crawl, stand, walk, talk, unclench her fists, eat, drink from a cup and just learn simple daily life skills. Each time a doctor shared some new diagnosis I felt as if my heart had been ripped out of my chest. The pain was unbearable and no matter how much I love and adore my Sam today, I do not think it is a pain that will ever completely disappear. I am pretty certain that every parent of a child with a disability carries this pain because we have all shared similar dreams and experiences. It doesn’t matter what the disability or disorder is – autism, cerebral palsy, a chromosome abnormality, etc. It isn’t fair, but it happens and we end up feeling tired, angry, alone, depressed, besieged and defeated, wondering why it had to happen.
We, as parents, also make countless sacrifices but I will only point out a few. Goodbye to REM sleep, “Abs of Steel,” spontaneity, sleek sporty cars and compassion from the people we expect it from. Hello to baggy eyes and dark circles, extra pounds or loss of pounds, super structured days, modified minivans and people we never believed would judge us or make rude comments to us. Yes, because our child has a disability and is often unable to tolerate certain activities we upset our family and/or friends by skipping the big, crowded parties and events – not because we want to but because it is hard and it isn’t much fun when others stare at you (instead of help you) while you spend all of your time and energy chasing your child at the event to keep them safe, or to avoid a head banging, arm biting meltdown that can occur at any given second. We also do our job to fight medical insurance companies, fill out discouraging behavioral assessment forms, attend the 2-3 hour-long IEP meetings at school and follow-up with the state to find out what number our child is on the interest list for disability services – it could be 20,000 or 40,000. In addition, the medical bills are relentless, visits to the doctor and hospitals are frequent, and items and equipment such as diapers, “special” treats, cups, feeding tubes, leg braces, walkers, wheelchairs, adaptive communication devices and adaptive bicycles and swings are costly and usually out of our budgets – we buy them or find a way to get them anyway. Finally, babysitting and respite are difficult to find and if we can afford the vacations we all so desperately need to take, we must plan to bring our entire home with us, devise a strategy and pray we all survive the airport, plane ride or the long road trip.
It’s exhausting and there are days when I am so tired I just plop down on the couch and feel like crying. But then a new reality kicks in and I take a deep look at my sweet Sam, her contagious smile and her innocent beauty. I recognize all of the special moments she gives to me each day. I see HER. Sam is a happy, funny, healthy, fearless, intuitive and bright child with amazing courage, strength, determination and resilience. Sam doesn’t know her life is challenging. As far as she’s concerned, her life is “normal.” Sam is nonverbal, doesn’t make much eye contact and doesn’t use American Sign Language consistently. Yet, she has the amazing ability to communicate without words. She pushes me towards the kitchen pantry and places my hand on the doorknob so I can open it and give her Cheerios. She walks me to the refrigerator when she wants a drink. She grabs my purse, slings it over her shoulder, takes me by the hand and walks me to the garage when she wants to go for a car ride. She takes my hand and walks me to the bathroom door when she wants a bath. She hands me her favorite duck toy when she wants me to play in her room. She gives me her bathing suit when she wants to swim. She is also on the Special Olympics swim team, has learned how to use her “swimming arms,” and won a silver medal in an aquatics 10-meter race. She has gone surfing in the ocean. She plays Challenger baseball. She participates in Special Olympics track. She rides horses and she has even gone zip lining – many things that John and I have never done!
On this brisk morning at the Rodeo Cook-Off, Sam wore a new dress, denim jacket and her black studded cowboy boots. Her pigtails were braided and she proudly wore the white, silver and purple beaded necklaces that one of the male volunteers had given to her when we arrived. She was content. She walked around, observed the entertainment and then decided to sit and eat (even though she’s usually not a “public eater”). There were burgers, hot dogs and chips but she chose to eat the Cheerios I had brought from home and, of course, the chips! When she finished she happily ran to the dance floor. John and I stood nearby and then she held John’s hands and they slowly began to dance. Sam was giving me one of those “my eyeballs are popping out of my head” moments that I couldn’t wait to share with my friends and family. She wore a smile that lit up my world and all I could do was smile in return. I noticed other people were smiling too and realized that my little girl was being exactly who I imagined she would be! My heart, the one I felt had been ripped from my chest one too many times, was filled with so much love and joy. I knew John’s heart was full too. On this rodeo day, Sam danced with her Daddy for the FIRST time!
When I see the wonderful things Sam is beginning to do there is little reason for me to dwell in pain or negative thoughts or focus on her disabilities. I look at my world in a whole new way and the important things in life become clear. Yes, Sam is different and will always be different. She is always in motion, carrying her fidget toys and babbling like a one year old. Her developmental growth has been a slow process but she has accomplished more than many of her doctors would have ever imagined. I have learned that I can still do all of the things I dreamed of doing with her (and more) but in a different way.
Different is good because being different makes Sam interesting! Sam is a mystery. I have witnessed her power to give several medical students homework assignments (ha-ha). Sam is a gift. She has brought several extraordinary people into my life, has made ME different and has taught me how to nurture hope and never give up. She has also given me greater depth and has made me a much stronger, complete human being, with a special wisdom and compassion. Sam has helped me appreciate that I, too, have gifts and abilities that I never knew I had.
Sam is MORE than the little girl I had dreamed of, and I feel grateful and blessed. She doesn’t give up and I believe she will continue to make my eyeballs pop out of my head! Sam inspires. Sam loves unconditionally. Sam is my hero. Sam is my world.