What an inspirational story from Myer’s mom!
We adopted Myer from China when she was 11-months-old. She was a healthy happy baby, busy learning to walk and talk. She was an instant joy to our family as we adjusted to being a family of six. A few months after we arrived home from China, Myer began having seizures, and her body began to shut down. Doctors at Children’s Mercy Hospital diagnosed her with Bacterial Encephalopathy due to Influenza B. The Doctors told us that Myer was so sick and frail that she would probably not live another two weeks, and she was placed on Hospice. God had other plans for Myer, and, after several agonizing weeks, she began to wake up. Eventually, we were able to leave the hospital. Due to residual damage from brain swelling, Myer was a very different little girl than the busy baby we had known just weeks before. She had no vision, no verbal skills, and no ability to use her arms or legs, but we were grateful to still have our daughter. After years of therapy and hard, hard work, Myer has regained her sight, and all of her verbal skills, sassiness and all. Although she has gained strength in her arms and legs, she still suffers from global deficits, delays, and overall weakness. It has been Myer’s beautiful determination and spunky attitude that has gotten her this far, and we have no doubt it will carry her even further in the future. We consider her life a treasure, and each and every day with her is a gift.
Today, Myer is 13 years old, the youngest of four children. She is a sparkly, and sometimes sassy, teenager who loves to sing, paint, watch movies, and swim – activities that are less impacted by her disability. Although Myer uses a wheelchair for mobility, that has not stopped her from being very active, enthusiastically embracing a full life. Several years ago, we moved our growing family into a reverse ranch home with a walkout basement that also has a swimming pool, which we use to supplement Myer’s aquatic therapy. As Myer has grown a little older and a lot bigger, it has become very challenging to move her safely to the downstairs to be part of family activities and to have access to the pool. Several family members who use to routinely help with Myer’s care, including her grandparents, are simply not strong enough to assist anymore in these tasks. Because Myer comes from a large family, our finances have been stretched with college expenses and Myer’s ongoing medical expenses. Just this year (2019) Myer’s older sister graduated from college, her brother is starting college and Myer has had two surgeries (with one more scheduled) and we purchased a new wheelchair. Our family does not qualify for public assistance to help with Myer’s care, and our family does not currently receive any financial assistance from outside sources, public or private, for any of Myer’s expenses. All of these factors have made the chairlift financially impossible for our family to provide. Myer has been involved in aquatic physical therapy for most of her life. In the water, she has freedom and abilities that she doesn’t have on land. Swimming provides Myer with joy, independence and a sense of accomplishment, which is incredibly beneficial in building her self-esteem as she heads into her teen years.
To receive your assistance in installing a chairlift would provide Myer with the ability to freely move up and down the stairs in our home, and would be such a blessing for our family. Myer would have access to all areas of our home and which would help to offset the physical limitations in our home.
Quality of life comes from relationships and experiences, and ideally should not be limited by abilities. As a parent of a special needs child, this truth comes with a great responsibility to make sure that your child’s relationships and experiences are abundantly deep, even when they may not be easy or readily available. We have found that raising our daughter, Myer, has been an adventure in being adaptable and choosing to be joyful in life, which has richly blessed all of us. Myer is the youngest of four siblings, so our family is frequently on-the-go in non-handicapped social circles, which has been both beneficial and challenging. Making adaptations so that Myer can participate alongside everyone else has been a good life lesson for our big kids and has provided many satisfying moments. The smile on Myer’s face when she “danced” in a ballet recital in her wheelchair, or sang a solo in the school talent show, or simply had a “hold your breath” contest with her friends in the pool have taught us one huge truth, that to be seen and to be known, to have a seat at the table, or to have a part in a show, can make life worth living and can make all the tricky moments worth the challenge to get there.
Those who generously provide opportunities to engage Myer in the big world breathe life and hope into her reality. Our family loves being together regardless of the activity, whether eating outside, watching a movie, or swimming in the pool. In these activities, we each have equal footing in engaging with Myer and being a family. Equipment that provides freedom for Myer, such as a chairlift, that matches her desire with the ability to be included, makes us all a better community, a community where everyone has an opportunity to join in the journey, which is actually a gift too valuable for words.
Variety KC donors know how important safety is for caregivers and want want Myer to have the lift that allows both her caregivers/family and herself to get around her home safely. Variety KC wants to make sure all kids have the chance to Be Active, Be Social, and Belong…safely! Help us make this possible for all families, donate today at VarietyKC.org/donate/
