The enjoyment of my son’s first steps, his first words, and every other special moment after that were partially stolen because of the constant worry that comes with being the mother of a child who suffers from a seizure disorder. Every interaction left me wondering, “What if this activity will cause a seizure—or worse?”
Massiah is medically fragile and suffers from life-threatening seizures and other complications as a result of Tuberous Sclerosis Complex (TSC). TSC is a rare, incurable genetic disorder that causes tumors and tubers to form on the brain and major organs—he currently has dozens of these on his brain, five behind his eyes, and three left in his heart, plus numerous cysts on his kidneys that have resulted in a stage 1 kidney disease diagnosis. Since 2015, Massiah has undergone routine monthly bronchoscopy and laryngoscopy to remove airway growths. Those growths have slowed down due to beginning chemotherapy in July of 2020, but they have not yet gone away.
While the PTSD and anxiety of being a mom of a child with disabilities have drastically overpowered the enjoyment of being a first-time mom, it has not stopped me from making sure that Massiah has the best life—and the best healthcare—possible. Shortly after Massiah was born, I moved away from Virginia where all my friends and family live to Delaware to access AI Dupont Children’s Hospital. One of the major fights I continue to battle is Massiah’s ability to have professional medical care at home. He has been able to grow up at home and thrive due to the in-home nursing that he has received through Delaware’s Medicaid program. Due to the COVID-19 pandemic, and me being a stay at home mom, I have not been able to access full-time home nursing care for Massiah. If full-time nursing were available, he would have the necessary medical care he needs, and I would be able to have the relief I need to provide myself with the self-care I need to continue to be the best mom for him.
Since I’m a single, stay at home mom, the state only authorizes eight hours of in-home nursing respite care per week for Massiah. Don’t get me wrong—I am so grateful for Massiah’s nurse, and for the two days a week I am able to run errands, deep clean, and practice some self-care while she is there keeping my son medically safe and healthy. But, I am beyond exhausted. It’s simply not enough. Massiah is going through chemotherapy and multiple other appointments and therapies. As his mother, it’s my job to keep him alive. When the COVID-19 pandemic hit, Massiah lost his 55 hour per week authorization for nursing care because he was no longer in school. The state’s justification is that he can only qualify for care when school is in session. This makes no sense. His condition has not changed. I am a mother, not a doctor or a nurse.
This pandemic ought to serve as an illustration for the state of how important home care is in keeping vulnerable and medically-complex children like Massiah at home. Delaware can ensure Massiah and others like him continue to be healthy and safe by recognizing that state programs like private duty nursing (PDN) need to be prioritized and adequately funded! This is especially true in times like this, when even taking him to the grocery store and laundromat could result in a serious infection or worse. State home care programs must be better funded so that there are enough nurses to fill the hours Delaware kids truly need. I have fought for years and will continue to fight for Massiah’s care for the rest of my life. But, that care is not eight hours a week. Massiah and I are beyond blessed to be able to have him grow up and thrive here at home, and I can only imagine how much more he would learn and grow if he were able to receive consistent medical care safely at home while I provide for him as I am meant to—as a mom. I need to be a mom first, and Massiah needs me to be a mom first too.