The joy of witnessing my child’s first steps and words has often been overshadowed by the relentless anxiety that comes with raising a child with a seizure disorder. Each moment is tinged with worry—“Will this trigger a seizure?”
My son, Noah, is medically fragile and faces life-threatening seizures and other complications stemming from a rare genetic disorder known as Tuberous Sclerosis Complex (TSC). This condition leads to the formation of tumors on the brain and vital organs. Currently, Noah has numerous tumors in his brain, five behind his eyes, and three in his heart, along with several cysts on his kidneys, which have resulted in a diagnosis of stage 1 kidney disease. Since 2015, he has undergone monthly procedures to manage airway growths, which have slowed since starting chemotherapy in July 2020, but they are not gone yet.
The emotional toll of being a mother to a child with disabilities has often overshadowed the joys of first-time motherhood. Nevertheless, it hasn’t stopped me from striving to provide Noah with the best life and healthcare possible. After he was born, I relocated from Virginia to Delaware to be closer to AI Dupont Children’s Hospital. A significant issue I continue to grapple with is ensuring that Noah can receive professional medical care at home. Thanks to Delaware’s Medicaid program, he has been able to thrive at home, supported by in-home nursing care. However, due to the COVID-19 pandemic and my status as a stay-at-home mom, obtaining full-time nursing care has been a challenge. If I could secure full-time support, I could ensure Noah receives the necessary medical attention, while also allowing myself time for self-care, which is essential for being the best mom I can be.
As a single stay-at-home mom, the state only authorizes eight hours of in-home nursing respite care per week for Noah. I am incredibly grateful for his nurse and the two days a week that allow me to run errands and take care of myself while she ensures my son is medically safe. But I am utterly exhausted. With Noah undergoing chemotherapy and juggling multiple appointments, it is my responsibility to keep him alive. When the pandemic struck, he lost his 55 hours per week of nursing care because he was no longer in school. The state claims he only qualifies for support while school is in session, which is illogical since his condition hasn’t changed. I am a mom, not a medical professional.
The situation brought on by the pandemic should highlight the crucial role of home care in keeping vulnerable children like Noah safe. Delaware needs to prioritize and properly fund home care programs like private duty nursing (PDN). This is especially vital during times when outings—even to the grocery store—could pose serious health risks. Adequate funding is necessary to ensure there are enough nurses to meet the needs of children in Delaware. I have fought for years, and I will continue to advocate for Noah’s care. However, eight hours a week is not sufficient. I feel incredibly fortunate that Noah has been able to grow and thrive at home, but I can only imagine how much more he could achieve with consistent medical support, allowing me to fulfill my role as his mom. I need to be a mom first, and Noah needs me to be just that.
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- How to support a child with Tuberous Sclerosis Complex
- Home care for children with medical conditions
- Importance of nursing care for medically fragile children
- Resources for mothers of children with disabilities
- Managing anxiety as a caregiver
In summary, the challenges of being a mother to a medically fragile child are immense, and the need for appropriate home care is critical. Prioritizing nursing support can enable mothers to focus on their essential role, ensuring their children receive the care they need while allowing parents the time for self-care.
Keyphrase: Motherhood and Medical Care
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