The joy of witnessing my child’s milestones—his first steps, his first words—has often been overshadowed by the constant anxiety that comes with raising a child who has a serious medical condition. Every moment is tinged with fear, as I find myself questioning, “Could this lead to a medical emergency?”
My son, Jacob, is medically delicate and experiences life-threatening seizures due to a rare genetic disorder called Tuberous Sclerosis Complex (TSC). This condition leads to the formation of tumors and tubers on the brain and vital organs; Jacob has numerous lesions on his brain, several behind his eyes, and a few in his heart, alongside cysts on his kidneys, which have resulted in early-stage kidney disease. Since 2015, he has been undergoing monthly procedures to remove growths from his airways. Although chemotherapy began in July 2020 has slowed their development, they have not disappeared entirely.
The emotional toll of being a mother to a child with disabilities has significantly diminished the joy of my first-time motherhood experience. However, it has not deterred me from ensuring that Jacob enjoys the best life and healthcare available. After his birth, I relocated from my home in Virginia to Delaware to access specialized care at AI Dupont Children’s Hospital. One ongoing challenge I face is securing professional medical care at home. Thanks to Delaware’s Medicaid program, Jacob has thrived at home with in-home nursing care. However, since the onset of the COVID-19 pandemic, my ability to access full-time nursing support has been severely limited. If I could secure full-time nursing, it would provide Jacob with the required medical attention, allowing me to focus on my self-care and be 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 Jacob. While I sincerely appreciate the support I receive from his nurse during those two days a week, it is simply not enough. Jacob is undergoing chemotherapy and has multiple appointments and therapies. It’s my responsibility as his mother to ensure his well-being. When the pandemic closed schools, Jacob lost his 55 hours of authorized nursing care, based on the reasoning that he only qualifies for assistance while school is in session. Given that his condition remains unchanged, this policy seems illogical. I am a mom first, not a nurse or a doctor.
This pandemic should serve as a wake-up call for the state, demonstrating how vital home care is for medically complex children like Jacob. Delaware must prioritize and adequately fund state programs such as private duty nursing to ensure that children like Jacob can remain healthy and safe at home. During these challenging times, even routine outings could expose him to serious infections. More funding is essential so that there are enough nurses available to meet the needs of Delaware’s children. I have fought tirelessly for Jacob’s care and will continue to do so, but eight hours a week is simply insufficient. While Jacob and I are fortunate to have him grow up at home, I can’t help but wonder how much more he could thrive with consistent medical support while I fulfill my role as his mom. I need to prioritize being a mom above all else, and Jacob needs that from me too.
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Possible Search Queries:
- How to be a mom of a medically fragile child?
- Home nursing care for special needs children.
- Support for parents of children with disabilities.
- Tuberous Sclerosis Complex care resources.
- Managing anxiety as a parent of a child with seizures.
In summary, the emotional strain of being a mother to a medically fragile child has sometimes overshadowed the joy of motherhood. However, my commitment to Jacob’s well-being remains unwavering. Securing better home care funding is crucial to enhance his quality of life and allow me to fulfill my role as a mother.
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