The bond between parents and children is always special. But when the parent or child suffers from an illness, the strain is shared by both parties. So is the journey. Supporting a loved one while they experience health issues can be tiring and frustrating, but having someone there who loves unconditionally makes all the difference in the world.
The unconditional love of a father should never be underestimated or unappreciated. A committed father will sacrifice and not allow anybody – or anything – to affect his relationship with a son or daughter.
He made frequent visits to the doctor, hospital, and pharmacy during the 1960s–1990s, when there was even less awareness and understanding about a disease with the stigma of being a “female” one (90% of individuals with lupus are women).
I was three years old when I learned that he had Systemic Lupus Erythematosus (SLE), the most common type of lupus, which ranges from mild to life-threatening, and that there was no cure. The most difficult part was seeing a lupus flare worsen his symptoms, such as a butterfly-shaped rash across the nose and cheeks, skin rash, arthritis, sensitivity to the sun, and prolonged and extreme fatigue.
It embarrassed me as a boy when strangers would stare and make fun of him for always wearing a hat, sunglasses, jacket, and jeans for protection from the South Florida sun.
My parents got divorced, and I lived with him in high school. We spent a lot of quality time together and developed a very strong bond, becoming best friends. I no longer cared about how he looked or dressed in public.
Fatherhood emboldened him in his personal battle with lupus and he was always there for my older sister Lisa and me.
I am attempting to improve the quality of life for people with lupus by educating and inspiring others in his memory.
In 2014, I started using my God-given strength and health in gym awareness pictures and videos, lifting heavy weights (bench press) in lupus nonprofit t-shirts on liftingawareness.com.
In 2016, I started raising lupus awareness and fundraising with some coaches and players on The Miami Dolphins, The University of Miami Hurricanes, and St. Thomas Aquinas High School, his favorite football teams, on liftingboca.com/n-f-l/
In 2017, I started raising lupus awareness with professional actors, actresses, musicians, and celebrity chefs (Chef Michelle Bernstein and Chef Nancy Fuller) on social media.
Having a father with lupus was actually a small tradeoff for experiencing the joy and comfort of unconditional love.
Motherhood has certainly changed my life, but to a much larger extent than what I was prepared for. Ryker arrived two months early and spent his first 22 days in the NICU. Tests never indicated there may be an issue, but around six months of age, he began missing milestones and was eventually diagnosed with cerebral palsy. Since that moment, I have had to grieve for the child and life I thought we would have and learn to celebrate the amazing child that we were given.
I have struggled, but I’m still like any other mother. The only difference is that the reason for some of my struggles are always on display. It’s obvious that my child cannot walk on his own or participate in the same activities as a typically developing child. And, even though it is not observed firsthand, one may correctly suspect that our lives consist of many doctor’s appointments, surgeries, endless therapies, clinical trials, and medical equipment.
What may not be apparent is that I share the same emotions as all other parents. I love Ryker more than life and will do whatever is in my power to ensure he has whatever he needs. I want him to be successful and kind. I want him to be accepted, have friends, and be married someday. I hope for him to be strong, compassionate, and caring. I want for him all the wonderful things life has to offer.
I do not believe that Ryker was given to us because we were already strong or special ourselves. I believe that, as parents, we become exactly what our children need us to be.
Anyone hates to see their child struggle, and I am no exception. The things that Ryker endures in his life bring me anger, frustration, and tears. At times, I feel resentment toward others who seem to have an easier path to all the things I want for Ryker, but I do not want anyone to pity our situation.
What I do wish is that others learn from Ryker. I hope they learn that it’s ok to be different—it doesn’t make you any less amazing. I hope he teaches others about compassion, understanding, and empathy. I hope that he proves that with hard work and determination, you can overcome all obstacles in your life and do so with a smile on your face. We want to show that Walt Disney was correct when he said, “It’s kind of fun to do the impossible.”