Why Me, God? — A Mother’s Journey as a Caregiver to Children with Autism and Hemophilia
Growing up, I always envisioned having a fairy-tale family. However, life had different plans.
I met my now-husband in college, and after graduation, we got married with big dreams for our future. But as the saying goes, “Tell God your plans if you want to make Him laugh.”
Two years later, at thirty-five weeks pregnant, our first son arrived prematurely. While in the neonatal intensive care unit, I noticed his newborn blood spot test site had not healed. Subsequent tests revealed he had severe Hemophilia B, a rare bleeding disorder that impairs blood clotting. This immediately brought back memories of my late uncle, who tragically passed away at the age of eight from a brain hemorrhage due to the same disorder.
By the time our second son was born, we had gained a lot of experience from numerous doctor’s visits and active involvement in various bleeding disorder advocacy groups; so we were more prepared when we learned he also had hemophilia. However, our knowledge was put to the test when both boys developed inhibitors to their factor IX therapy. Inhibitors made it exceedingly difficult, if not impossible, for their bodies to control bleeding. They underwent immune tolerance induction (ITI) therapy to eliminate the inhibitors, a process that demanded countless days and nights at the hospital. Thankfully, ITI proved successful after several attempts, but only for one of our sons.
When our third son was born, we were relieved that he did not have hemophilia. He, instead, was born with a rare left-sided gall bladder. I am convinced he wanted to add a unique twist to our family story.
By then, managing our sons’ hemophilia had become second nature. We seemed to be hitting a pretty good stride, until we noticed our eldest son was not meeting some of his developmental milestones. (A note to parents: comparing your child to others will immediately rob you of joy.) After following up with the pediatrician, we were told he did exhibit some developmental delays. It wasn’t until he was three years old that we received the official diagnosis, autism. My heart sank. I remember asking, “Why me, God?” Navigating the world of special needs felt like stepping into an unknown realm, filled with countless therapies, endless appointments, and a constant internal battle — mommy guilt and embarrassment. I felt completely overwhelmed, but my son’s smile and family support kept me going.
Life threw another curveball when my second child was also diagnosed with autism. It felt like God was playing a cruel joke on me. The fear and anxiety resurfaced, bringing with them a sense of déjà vu and a dose of postpartum depression. I couldn’t fathom why this was happening again. The weight of caring for two special needs children with rare disorders was immense. There were days when I cried, nights when I prayed, and countless moments when I doubted my strength.
Our lives had become a juggling act between managing hemophilia and navigating the unpredictable world of autism. With two children on the autism spectrum, one particular challenge was their changing eating habits. Many children with autism and chronic genetic disorders experience nutritional inadequacies or gastrointestinal issues. Initially, I faced numerous challenges in introducing new foods and understanding our children’s likes and dislikes. Once I grasped the significant impact of proper nutrition on health outcomes, I dedicated countless hours to reading articles and researching new medical and nutritional therapies. Armed with this knowledge, I began experimenting with recipes. I’ll admit, there were many times I encountered roadblocks and felt discouraged. However, our transition to a healthier lifestyle has significantly improved health outcomes for myself and my family.
Amid the chaos, I found solace in small victories — a new word spoken, a step taken, a hug given. These moments became my anchors. Despite their challenges, my children taught me profound lessons about resilience, unconditional love, and the beauty of small triumphs. Support came in unexpected ways. Aside from family, fellow mothers in similar situations became my lifeline. We shared stories and resources, and most importantly, we understood each other’s pain and joy. My family stood by me, offering help and a listening ear. Their support reminded me that I was not alone in this journey.
“Why me, God?” I still ask that question occasionally, but I have realized that while my journey is challenging and uniquely mine, it is filled with immense love and purpose. My children are outstanding teachers. They have shown me a deep love and resilience I never knew existed. To all caregivers, remember: you are stronger than you think, and your journey, though difficult, is also profoundly beautiful. Keep holding on to the small victories, and know you are not alone.
About the author
Kelly Cribbs is a passionate advocate for rare diseases, specializing in autism and hemophilia. A graduate of Hampton University, Kelly combines her academic background with her personal experiences as a mother of three, two of whom have autism and hemophilia. Her journey has been marked by resilience and a relentless pursuit of better health outcomes for her family, leading her to become an expert in nutritional therapies and special needs care. Dedicated to raising awareness and supporting families facing similar challenges, Kelly is committed to amplifying the voices of those affected by rare diseases, particularly within the Black community.
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