Lily
Adaptive Tandem Bike
American Mobility Project has awarded Lily and her family a specially adapted Tandem Trike. Lily will be able to ride with the whole family and feel the wind on her face and be front and center. Excitement abounds for all. Have fun, Lily. We're looking forward to photos with your big smile. The family shares their story written by Lily's Mom.
My husband and I are older parents. We have a 15-year-old son named Luke and 11-year-old twin daughters named Lexi and Lily. I was diagnosed with multiple sclerosis in 2005. A year later, our son was born. A week after my son’s birth we had a photographer take pictures for birth announcements. The following year I was diagnosed with lymphoma. My husband and I are determined to not allow these diseases control us and live life to the fullest. These diseases are controlled with exercise, nutrition, medications and a support system.
We suffered two miscarriages after the birth of my son and several months later were blessed with twins in 2010! My pregnancy was normal as we anxiously awaited the birth of our twins. The girls were born prematurely at 32 ½ weeks. The delivery was as planned, but the girls were whisked away soon after birth to a neonatologist and a team of nurses. We didn’t get to hear the babies cry or hold them until 24 hours after delivery. The neonatologist met us at the NICU and told us, “We had the very best in one and the very worst in one child.”, before we had a chance to see and hold them. We weren’t mentally prepared to hear these words and didn’t understand them fully.
Upon entering the NICU, we looked at the wall in front of where the girls were placed and quickly realized there was a picture the photographer had taken of my husband holding Luke for his birth announcement four years previously. We had no idea the picture was hanging in the NICU. The photographer had donated the picture to the hospital as décor to hang in the NICU. The NICU staff didn’t realize the significance of the picture hanging on the wall until we entered and thought the picture was of models and purchased online. What are the odds of having twins be placed in a NICU in front of a picture of their father and brother? Needless to say, this was the beginning of God having a hand in every part of our lives. The girls spent the next 27 days in the NICU and came home on heart monitors.
After seven months, Lexi was developing typically, but Lily was not meeting her milestones. She was seen by a neurologist and many tests were run. She was diagnosed with spastic quadriplegic cerebral palsy and dystonia based on her movements, even though all the tests were normal. Her movements were not typical. Lily wasn’t sitting, rolling, or using her hands. Her muscles were hypotonic at times and hypertonic at other times. My husband was supportive, but I fell into a deep grief for two years, because I had envisioned two little girls running and playing. I continually questioned myself, because I was certain I had caused Lily to have these diagnoses. Perhaps during my pregnancy, I exercised too much, ate something I shouldn’t have eaten, slept incorrectly, didn’t drink enough water. I went through the motions of taking care of my daughters and son, but I wasn’t mentally engaged with them. I was constantly asking Jesus, “Why me? What did I do wrong to have a child with a disability? Why was he punishing me? What was wrong with me?” The two diseases I had been diagnosed with a few years earlier did not knock me down, but the birth of my twins found me in a place of uncertainty.
After two years of questioning, I woke up one day and told my husband, “Why not me? We’re perfect to be her parents!” It was at this point I realized I had been grieving a child I didn’t know. I was grieving a child I had envisioned during my pregnancy, but not the child God intended for us. It was this awareness that made us realize we had been granted an angel to live among us. Jesus created Lily exactly the way he intended her to be and blessed us with the most precious gift of unconditional love. We embraced this gift and set forth to provide the best quality of life for our family.
When Lily was nine years old, she was diagnosed with congenital adrenal hyperplasia (nonclassic form) which causes abnormal hormone levels. In addition, Lily has undergone seven surgeries. Due to her prematurity, she wasn’t able to chew her food properly because the enamel on her teeth did not properly form. Surgery to cap her teeth allowed her to learn to properly chew, but an immature gastrointestinal system did not allow her to consume enough volume with each feed. She had surgery for a g-tube so she could consume the extra calories she couldn’t during the day while she sleeps. She is now gaining weight and growing well. She had strabismus surgery in each eye and this has allowed her to see and process pictures effectively. Her vision is now normal. In 2018, she had a surgery called selected dorsal rhizotomy to release the spasticity in her legs and four months later underwent surgery to lengthen her hamstrings. This allowed her to extend and flex her legs without the spasticity forcing her to stay in a constant state of muscular contractions. In 2019, she had bilateral hip surgery because both hips were dislocated due to not forming correctly in utero. The following year she had surgery to remove the hardware from the hip surgery. Soon after these surgeries, Lily learned to pedal an adaptive bicycle. The joy we felt could never be measured with this milestone!
The surgeries, treatments, and hours of therapies allow Lily to move in ways many people may take for granted. She moves with a genuine smile and pride. While her movements may not look typical, we are grateful for all of them and understand the meaning that things do not have to be perfect to be beautiful.
After 11 years of genetic testing, surgeries, therapies, and research studies, we were informed last year that Lily’s diagnoses were due to a very rare gene variant of mitochondrial disease. There had been three people so far determined with this variant as of September 2021. Rather than falling into a depression, we embrace this and work diligently with her doctors to ensure Lily has the supplements, medications, therapies, and treatments to ensure she remains strong and does not regress.
Lily is the epitome of pure joy and loves to play. You feel this when you look at her and she looks deep into your soul. Sometimes, the “very best in one and the very worst in one child” forces us to pivot and change our perspective of “Why me?” to “Why not me?”. If a flower doesn’t bloom correctly, we adapt and change our perspective to give the flower nutrients and love to bloom. Our family is a blossoming flower that continues to grow and love.
Last year, we had a setback in November when my husband had a stroke. Fortunately, the stroke was treated quickly and he has fully recovered. He exercises daily and stays healthy. He works long hours and we are so very blessed.
Our path includes many doctor appointments, seven to nine therapies per week, school, careers, family, and our marriage. This means balancing the needs of our children while teaching them to love God more than we do. Lily has many needs, but the needs of Luke and Lexi are equally as important. It is our responsibility to figure out a balance for our family. I went from teaching at the university to teaching part-time online classes, so I could devote my time to family. Our path allowed us to discover our family bond and the love of siblings. If you want to know the character of siblings toward a special needs sibling it’s important to watch them fiercely protect, care for each other, and instill every activity and decision made for the family to always include Lily whether she was physically capable or not. We will find a way to make it happen, regardless of the disability. Speak to Lily as a baby and tactfully be instructed by her siblings that she understands everything and please treat her as such. We are determined to include Lily in everything life has to offer as we unite to strengthen our family bond. For example, when our kids go skating, Lily takes her gait trainer on the skating rink floor and walks while her sister and brother skate and her parents dance behind them. We are a united front determined to find a way to allow our ideas manifest themselves for our family.
Our goal with the American Mobility Project is to allow our family to move and have the opportunity to ride bicycles together. We have never been able to ride bikes as a family. Lily had an adaptive bicycle which she has now outgrown and we would walk next to her to help steer. The gift of a tandem adaptive bicycle will allow us to provide our family with an activity to stay active together, while allowing Lily to ride her own bike and have my husband or myself steer. We can envision seeing smiles and pure joy of the wind blowing in the kids’ hair as we hear Lily’s contagious laughter! We know we will look at each other and thank God for our beautiful family, kindness, and generosity of all people. There is good in the world and we must continue to be the good. God is good all the time.