98: More than a Mom

98: More than a Mom

From Chicken Soup for the Soul: Family Caregivers

More than a Mom

For many are called, but few are chosen.

~Matthew 22:14 KJV

In many ways, I thought that being a mom qualified me for the title of “caregiver.” Doing laundry, preparing meals, and administering Tylenol as needed filled my days. However, it wasn’t until our youngest of four sons was diagnosed with brain cancer that I truly understood the role of a family caregiver. At first, many aspects of life remained the same. Nick’s condition was treated mostly in hospital settings, and my role seemed limited to providing transportation, rearranging the schedules of our other children, and encouraging Nick as he faced a roller coaster of good news and bad news.

Keeping Nick’s spirits up became my passion. Searching for new games, puzzles, and books to keep Nick’s mind occupied while he lay in a hospital bed consumed my energy. Reaching out to friends and family through a website I built for Nick released much of my stress as well as enabled me to share the highs and lows of Nick’s battle.

At first, I was able to keep my career as a teacher. Thankfully, many co-workers donated their sick days to me so that I could be with Nick without losing my income or benefits. When Nick’s journey entered its second year, though, I chose to take a leave of absence and devote my life solely to helping Nick. Slowly, cancer began to alter Nick’s health in noticeable ways. He lost the ability to use his left arm, so our focus became helping him function with as much independence as possible. I’ll never forget the joy we experienced when one of our older sons came home from college, dug out the Nintendo system, and discovered that Nick could play a few games using only his right hand! A surge of hope and laughter temporarily filled the walls of our home. As Nick’s primary caregiver, I felt a huge sense of relief knowing that Nick was happy in that season of altered physical capabilities.

Several months passed, and Nick’s legs weakened to the point of needing a wheelchair. Wanting to keep Nick’s spirits up, we rearranged furniture and had a friend help my husband build a ramp so that Nick could come and go into our backyard as often as he liked. One day, someone surprised us and showed up with an electric wheelchair that had belonged to her mom. Vividly etched into my heart is the grin on Nick’s face as he took off across our yard at full speed! He loved going all the way to the fence and then stopping at the very last second so that he could hear me scream.

Nick’s health weighed heavily on my mind from the moment I woke up until the last second before I fell asleep. Balancing his needs with the everyday needs of our other children became a challenge. Situations that seemed huge to Nick’s siblings (homework, friend issues, etc.) seemed trivial to me in light of Nick’s condition. This often led to feelings of jealousy in their hearts toward Nick. Realizing the seriousness of Nick’s health, I found myself angry many times when I saw jealousy in the eyes of our other kids. My anger combined with their jealousy and then compounded by the anxiety we were all under every day led to many heated conversations when we were not around Nick. Guilt began to sit heavily on my shoulders as I juggled the roles of caregiver, wife, and mom. Most days, I felt like a failure at all three.

The endless flow of meals from our church family, cards from friends and family, and gifts for Nick served to keep our family afloat in a sea that seemed filled with constant tidal waves of sadness and tension. I thought often of caregivers who might not have such support, and it broke my heart. I was thankful for every pie, every roast, every card, and every gift. Somehow, it seemed odd to be able to say “thank you” to God at such a difficult time, but honestly, there were no other words to show my gratitude. Caregivers cannot keep caring and giving without the love and support of friends and family.

The medicines Nick was required to take daily surpassed the contents of even my grandparents’ medicine cabinet. Because tumors kept returning after radiation, chemotherapy, and multiple surgeries, we turned to alternative supplements, and I found myself on a journey into a land I never knew existed. When the medical world gave up on Nick, I couldn’t. Somehow, I learned of an Amish herbalist three hours from home, and my mom and I set out on a journey to find his tiny office in the woods of Indiana. I smile as I recall this adventure with Nick and my mom. Although I believe Nick thought we had lost our minds, he joined in for the experience with his predictable, fun-loving spirit and enormous grin!

As his pain intensified and his condition worsened, we returned to traditional doctors for assistance and care. Even though our hearts never accepted the news that Nick was dying, our minds were beginning to wrap themselves around the reality that cancer was taking over Nick’s frail 13-year-old body. As a mom, my heart was breaking. But as a caregiver (and only by the grace of God), I stayed strong. Accepting medical equipment from a friend so that Nick could shower and use the restroom safely upset me on a maternal level, but strengthened me as a caregiver. I wanted to know that Nick was safe, no matter how much my heart ached every time I walked into the restroom and was reminded that our house had become more like a hospital than a home.

The last week of Nick’s life, our oldest son was home for Thanksgiving break. As a nursing student, Erich stepped in to help take care of many of Nick’s medical needs. While we had been blessed by the help of many nurses from our church, I cannot put into words the burden that was lifted when Erich arrived and stayed by Nick’s side 24/7. Watching my oldest son gently care for my youngest son brought tears to my eyes daily.

As our entire family gathered around Nick to say “goodbye,” I wept deeply. Hearing Nick hum as he left this earth and went to heaven was the most painful moment of my life. As a mom, I felt devastated. As a caregiver, I felt lost. In my immediate grief, I told my husband I wanted to begin a foundation in Nick’s memory. We began the Nicholas Yancy Nischan Foundation in order to carry on Nick’s legacy and touch the lives of others who are hurting.

My arms still ache to scratch Nick’s back. My eyes still long for the sight of Nick’s grin. But deep inside I know that he is in the hands of a caregiver beyond compare—one who not only cares, but who also heals completely. Nick now runs on streets of gold, medicine-free, with two strong hands. I consider it a privilege to have been chosen to be both his mom and his caregiver.

~Tammy A. Nischan

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