By Omar and Milybet Cepeda, Ed
“You cannot dream of becoming something you do not know about. You have to learn to dream big. Education exposes you to what the world has to offer, to the possibilities open to you.”
— Sonia Sotomayor
Before the days of modern medicine, a child with hemophilia spent a lot of time in hospitals and at home healing from bleeding episodes. As a result, many children living with a bleeding disorder experienced prolonged school absences and other challenges in academic settings. With accessibility of medication, prophylactic regimens, longer-acting clotting factors, Individualized Education Programs (IEP), and 504 Education Plans outlining educational modifications and accommodations for students with a health condition such as hemophilia, a bleeding disorder is no longer a barrier to education. This is the story of one family’s journey where success is intentional, not accidental, as told by mother and son.
Milybet:
In 2002, I married my high school sweetheart, Harry. My father had hemophilia—my husband knew I was a carrier and that I had a 50% chance of passing it on to our future child. Harry was familiar with hemophilia and assured me he was in for the long haul. In 2004, our son, Omar, was born and, as we almost expected, was diagnosed with severe hemophilia. A week later, I lamented to my husband, “He is going to grow up so fast; he will be in college soon.” Harry laughed and replied, “You’re so silly!” Well, that was a fast 19 years ago!
When Omar was first born, I wanted to bubble wrap myself around him. As a special education teacher, I contemplated leaving my job to stay home with him. However, when Omar was about a year old, Harry was injured and no longer able to work. He became a full-time Mr. Mom to our son.
While we adore our Omar to pieces, we worried. At times, I felt hopeless and lost in a world that revolved around navigating his health concerns. I often struggled to manage the chaos of an infusion and was consumed with apprehension when my son faced medical challenges. Sometimes my husband and I lost sleep, and sometimes our hearts skipped a beat—sometimes several beats—yet our son has always brought us such joy and makes us smile every single day.
As the years passed, we became more comfortable with our extra responsibilities as parents of a child with severe hemophilia. We were in this together—counting our blessings, overcoming self-neglect, having the strength to ask for help, reclaiming our lives, sharing our story, and spreading awareness. We want others to know having a child with a bleeding disorder is often challenging but manageable and rewarding.
In addition to his physical health and self-esteem, we were anxious about his education, the challenges he might have in school, his potential, and employment prospects. What would his future hold? Our son made it through pre-school, through grade school, and now, through high school. Next up… college.
When Omar was about ten years old, I decided to pursue a Doctorate in Education with a concentration in Organizational Leadership. It wasn’t easy balancing family, a career, and studies, but behind me was a young man rooting for my success, and I had to be a good example for him.
Since we were living it every day, when it came to choosing a dissertation topic, I decided on “Resilience Among Parents of Children with Hemophilia.” The mixed-method study explored the resilient nature of parents and summarized their experiences. The participants addressed diagnoses, severity, nature of the disability, functional limitations, current services, and personal experiences of overcoming adversity, with each having a range of emotions on treatments and the prolonged and unpredictable nature of aftercare. The respondents described positive and negative impacts of caregiving, which included a greater appreciation for developing empathy, compassion, patience, inner strength, and new perspectives on life. They revealed their concerns regarding healthcare support, academic support, mental well-being, physical wellness, and economic challenges. They also shared their experiences on receiving education/awareness, faith reliance, self-care, and social support network. Their shared experiences offered a context to help better understand what parents go through.
Omar:
Growing up with hemophilia has made my life unpredictable by nature and often affects my well-being. Knowing a mishap can lead to dire health complications or permanent damage is a mental and physical battle. As I grew and matured, I learned to be more receptive to change with an understanding that my condition can lead to unforeseeable consequences. I have been in and out of wheelchairs, crutches, boots, and bandages. Although these issues have some control over my life, I have learned to adapt and become a responsible adult.
I tried to embrace high school and stay active, but it wasn’t always easy. I loved playing basketball but had to give it up. I tried cross-country, but my left ankle wasn’t having it. I did enjoy golf and I was also a member of the marching band playing the mellophone and French horn all four years. I even joined the American Sign Language Club. I was sometimes lonely but that has to do with being somewhat shy. The pandemic hit, and we lost almost two years of face-to-face learning; then due to ankle bleeds and medical appointments I missed a lot of school but was able to keep up with the work, and my grades were good.
Sometimes my health situation would really get me down. Being involved in the bleeding disorders community helped to keep me from spiraling. When I was 10, I began volunteering with my dad as a deejay; DJ Omar, as I am now known—donating my talents on the turntable and bringing music to a variety of events such as family education symposiums, dinners, and annual walks in Florida, New Jersey, and New York.
For me, volunteering is a great stress reducer and distracts me from the pain I experience at times. It fills my soul and leaves me with a warm, fuzzy feeling in my heart. It makes me happy. Through the years, my hemophilia community involvement has been instrumental in my quest for self-exploration and acceptance.
Creating connections and building relationships has allowed me an outlet to combat loneliness. Conversing with individuals in similar situations has taught me that growth and adaptation are critical to overcoming challenges. I genuinely embrace stories and knowledge of community members because our commonality embodies unity, strength, and resilience. As I progress to the next chapter of my life, I can attest the emotional struggles with my bleeding disorder have significantly declined.
I knew once I started college, I would need to be even more mindful, make smart decisions, always be aware of my surroundings, and take more personal care of my hemophilia.
Milybet:
The day arrived when our assignments were marked, final exams taken, and studies completed. The ceremonies were huge, unforgettable moments for us as a family. Our family and friends supported us during our studies and shared in our celebration. Omar and I graduated three days apart, mine in Florida and Omar’s in New Jersey. What a fantastic, wonderful milestone to share with my baby boy!
Today I continue to work as a bilingual special education teacher in grades 5–8 in the subjects of English Language Arts and Math. In addition to planning, organizing, and assigning activities specific to each student’s abilities, I implement IEPs, assess each student’s performance, and track their progress. I collaborate with general education teachers, administration, and the Child Study Team. I represent the middle school on the Superintendent’s Council of Teachers and am a faculty advisor for the Junior Honor Society and also serve as a part-time professor at Rutgers University.
In my spare time, I am a meditation and mindfulness coach, a motivational speaker and patient advocate presenting at events across the country, and a volunteer and Walk emcee for the Hemophilia Association of New Jersey and the New York City Hemophilia Chapter.
My primary advice to others raising a child with a chronic condition is to learn how to cope, manage your emotions, and keep stress in check when your child is going through a rough patch—hemophilia or not. By managing my own emotions during any difficulty, my son and I can have greater well-being and a healthier state of mind. It is essential to manage your reaction to stress. Many studies have found children whose parents had high stress levels experienced poorer management of their health condition.
Omar:
With hard work, I applied, was accepted, and have been attending classes at Rutgers University. College has been my way of starting fresh, motivating me to work as hard as possible. During my first year I was very engaged in my classes and most of my time was focused on my schoolwork. I haven’t yet chosen a major, though I am more confident about the direction I want to go in and have it narrowed down between following in my mom’s special education footsteps or medicine. My experience has been great. There have been some challenges, but I have been able to navigate each one of them. It’s mainly been a matter of getting used to the subjects and materials and managing the workload.
My close friends are aware of my hemophilia. It isn’t something that I’m embarrassed by. If it comes up in conversation, I’ll gladly share information if the questions are respectful and considerate. Toward the end of my freshman year, I started to get more involved in school organizations and look forward to being involved in more when classes start back up.
For me, the most significant part of transitioning from high school to adulthood was to be more social. I embraced the opportunity to meet new people during my first year and was welcomed into the new environment. Another major part of this transition was being able to balance everything in my life. I can’t always be partying or playing video games. I recommend trying to be productive as soon as you possibly can.
As I progressed through the first year of college, I pursued some goals I’ve been wanting to achieve for a long time. I started going to the gym regularly and made sure to keep my infusion schedule consistent. This first year has also allowed me to explore other passions of mine that I otherwise wouldn’t have explored. I’ve been greatly interested in the world of filmmaking, and I’d like to learn more about it in the future.
Overall, I feel the key part to a smooth transition, especially if you have a bleeding disorder, is to have a supportive network of people, whether it’s family, friends, classmates, coworkers, professors, or advisors. Having trusted people to communicate your problems or concerns is a big part of making this life-changing transition easier.
Also, remember to contact the disability services at your college. Having your potential needs communicated with your professors through disability services, if and before they occur, is imperative.
Milybet and Omar - Our Advice:
When your graduation day arrives, take a moment to breathe and take it all in. Appreciate how far you’ve come—you deserve to celebrate. Let it all sync into your memory!
Remember that noone can ever take away your education. You own your school degree and work experiences.
Embarking on a new chapter of your life may feel as liberating as it is terrifying. Consider writing down your feelings and speaking with a loved one. Begin preparing for your next steps.
Work hard. Whether your next step is going to school or getting a job, give it all you’ve got. Be on time, study for your exams, and complete your work.
Learn to follow a budget. Understanding how to properly manage your money is a valuable skill that will help you throughout your life.
Follow a schedule, and learn to manage your time. Building this essential habit will increase productivity and punctuality. Whether learned or by nature, managing your time can get you far.
Don’t make excuses—own and learn from your mistakes.
Be open to change. Continue your education—learn about yourself, take up a new hobby, enroll in college or take a class or two on something you want to explore; pivot your career if you have an interest elsewhere.
Avoid comparing yourself with others at school or work. You are you. Create your unique path. Your only competition is with yourself. Be the best version of you, and don’t let anyone dim your light.
Don’t let a bleeding disorder stop you. You have the power to do amazing things!
Patient Navigation Program
Securing access to prescribed therapy, resolving insurance issues, and dealing with medically-related financial burdens represent some of the health system challenges faced by members of the bleeding disorders community. Our Patient Navigation Program is here to help!
DISCLAIMER: THIS IS NOT MEDICAL ADVICE. All information, content, and material is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider. Please consult a physician or other health care professional for your specific health care and/or medical needs or concerns and never disregard professional medical advice or delay in seeking it because of something you have read here or on our website.
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