As the world shut down for COVID-19 and nothing was normal, I discovered I had stage 3 breast cancer. After a seven-month deployment, my husband was out to sea on COVID-19 quarantine. I was home with three kids, trying to navigate the new reality. When I discovered a painful spot in my breast around Halloween, life was already upside down. My doctor evaluated me after Thanksgiving, and I was officially diagnosed with cancer after Christmas. I wasn’t trying to delay my care. However, COVID restrictions made homeschooling our kids with exceptional needs challenging. With Daddy at sea, things moved as fast as they could. I had to juggle caregiving with cancer.
Navigating Caregiving Amidst COVID-19 and Cancer
Navigating an aggressive disease is not easy. A cancer diagnosis kicks things into high gear for the cancer patient. Everyone suddenly wants to assess and develop a treatment plan. Everything quickly changes as you are scanned, biopsied, and meet your new care team members. It was the one time in my life when I saw a medical team across many departments and specialties. They actually communicated and looked at me holistically as a human being.
Being a special needs family, we are used to doctors and specialists. But rarely do they all communicate with each other without a major effort on our part as parental caregivers. My medical team was and continues to be a truly caring team that cares for my mental and physical health.
At home, things were more turbulent. My cancer diagnosis left my family to face waves of new information, feeling knocked down with every new update. It was a shock for all of us as our community stepped up. They had to step into my shoes as I went from doctor to doctor. Our children, who are enrolled in the Exceptional Family Program (EFMP) for their neurodivergence, were already out of sorts after COVID-19. They truly had no idea what was facing our family. And to be honest, I had no clue what was heading our way.
If you have had the terrible experience of undergoing chemotherapy, you know that there are highs and lows related to the side effects. During my third round of “the red devil” (one of the harshest chemotherapy out there, Adriamycin), I woke up unable to move, unable to function, and unable to stay awake. I was down for the count. I was delirious, nauseous, and exhausted. Unfortunately, our three EFMP children did not get the memo.
The Realities of Caregiving with Cancer
Because COVID and virtual learning were terrible for our children in special education, I had chosen to homeschool. This was a parent-directed and developed home school program, so our three children were at home, not in a school building, and not tied to a virtual classroom. I desperately needed our new-to-us respite care provider to give me the physical and mental breaks I needed, but I did not expect them at our house until 9 am. But by 8:30 am, our children were AWAKE, with the energy level of a pack of cheetahs. Mommy being out of commission was new for all of us. As a military spouse, I try to make it work, juggling everything. But this truly caught me off guard, as my first two rounds of chemo did not render me unable to function.
Managing Special Needs Children During Treatment
I woke to the noise of children outside, and it took me a little to realize the ruckus was in our small military housing townhouse backyard, and it was MY children and not the surrounding neighbors. Crawling out of bed, I made it to the window. I was able to open the window up enough to convince them to come back inside despite my nausea. Unfortunately, because of their special needs, it’s challenging to convince them of anything or change their minds once they’ve committed to their decision. They soaked their swimsuits, hosing the entire tiny backyard with water. Eventually, they took my suggestion of coming inside. But I didn’t realize they ran inside and continued back out to the front yard, fully wet, leaving a trail of water in their wake.
I had crawled back into my bed and was unaware they had left the house again. They were still learning about safety and self-control at ages eight, six, and four. I remember being woken up by our new friend and neighbor Samantha standing beside my bed, letting me know that she had wrangled my herd into her house, where her three young children were puzzled about why our three older children were soaked and in their house at breakfast time. I’m forever thankful for her quick thinking and ability to take on six children under eight before her first cup of coffee. And willing to take the risk of COVID exposure during a time when 6 feet was a necessity.
Challenges of Caregiving with Cancer
It’s hard to be a caregiver when you need caregiving yourself. It’s challenging when you’re the preferred parent for specific activities and need help. Managing doctors, schedules, medicines, and life’s details is tough when you typically handle it all. It’s the worst form of mommy guilt when your special needs children don’t fully understand why their world is upside down. Why can’t mommy tuck them into bed, drive them to their therapies, or help them communicate when they aren’t understood by those now caring for them? “Where is your hair, Mommy?”
It truly takes a special village when your special needs family needs real hands-on help. When you are the caregiver, it’s hard to admit you also need help. It’s hard handing over the reins to your new military friends or family when you cannot care for your complex children alone. It’s even harder on your children who don’t understand the words cancer or chemotherapy. But not caring for myself is not an option, so I take things one day and one appointment at a time, allowing myself to ask for help along the way.
About the Author
As a proud Navy military wife of 12 years, Meg Graves is no stranger to the hardships of military life. Meg and her husband share three children, two of whom are neurodivergent and in the EFMP. Meg, also of EFMP status as a breast cancer survivor, has first-hand experience in advocating for her children’s unique needs. Breast cancer has taught her that we all have our version of hard.
She has been front and center, listening and helping create change for other families at the local school level, for all exceptional children, through her roles as a special needs educator and Special Education Advisory Committee (SEAC) member.
Meg has empowered, led, and encouraged other military families as their needs and families grow and change. Her role as a Navy Family Ombudsman and Air Force Key Spouse at Joint Commands has given her insights into how EFMP differs between service branches. Meg graduated in 2004 from Millersville University as a dual major with a Bachelor of the Arts in English and a Bachelor of Science in Speech Communication, focusing on Communication Theory. She then pursued graduate coursework, focusing on Special Education and English as a Second Language education. Meg began working as Partners in PROMISE’s Volunteer Coordinator in 2022.
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