Moments
Continued...
It’s 2:00 a.m. and the hospital is quiet, with the exception of Nick’s IV monitor slowly dripping lethal chemicals into his very weak and frail body. The room is dark and comfortable. Although I’m utterly exhausted, I cannot sleep. As I watch my son sleeping, the moment fills my heart with sadness and loneliness. I begin to pray, but this time I pray to our Holy Mother, Mary. Perhaps she has the maternal comfort I so desperately need right now - a perfect Mother who knows of all the emotions that come with watching her Son suffer. Together, with the presence of my own mother and grandmother up above praying with Mary, at last I find a moment of peace for the night.
They came in singing, “You Are My Sunshine” - dressed from head to toe as fairy godmothers, including wands. It was their first visit for Nick’s first round of chemo (a round comprises a full week in the hospital). My two best girlfriends were there when he was born so they really are his godmothers. Subsequent hospital visits through the following months included: cowboys, pirates, clowns, Groucho Marx doctors, Thing 1 and Thing 2, penguins, grapes and the Incredibles. They always bring armfuls of treats, presents and laughter. These moments of true friendship are invaluable and reverently cherished by both me and Nick.
Nick had enough credits to graduate from high school when he was diagnosed so his principal and teachers let him determine how much he could handle through the rest of the school year. When it was time for graduation, his white blood cell count was barely high enough for him to even attend. Upon arriving for the ceremony, we were instructed there would be no clapping until the entire class had gone through the line. Family and friends patiently waited for his name to be called. Occasionally, there would be a few whistles and sporadic clapping. Finally, his name was read, “Nicholas William Raitt, Magna Cumma Laude” and the entire side of his graduating class stood up with loud applause and cheers – simply stunning to witness the burst of enthusiasm in the school’s color of blue. He was a full foot off the ground the rest of the day. In a moment of pride, tears flowed in gratitude for his success.
Nick has received many spiritual blessings for healing. Not only did our church dedicate an entire day of fasting for him, but hundreds of our youth carried the fast on through the evening. He has received a prayer shawl and a prayer quilt. Several denominations have included him in their church prayers and prayer chains; a few people we know, thousands we don’t know. But the strongest moment we experienced in the power of prayer came during one of Nick’s most difficult nights. He had severe sores in his mouth, throat and nose. Due to the mucositis and blood, he couldn’t swallow or talk and was on a feeding tube. My 6’3” son weighed only 125 lbs. He was home sleeping on the couch, too weak to go to his own bed. He slept with his prayer quilt and shawl wrapped around him. As I walked by, checking on him, he woke up and whispered, “Mom, would you pray with me?” For the first time in many years, he let me hold him in my arms as I softly prayed with the prayer quilt absorbing our tears. We were blessed with the amazing relationship between mother and son and a moment of comfort that He is with us and everything is going to be ok.
We have two other children living at home too – daughters ages 16 and 11. Both are avid softball players on competitive traveling teams. One beautiful fall night, Nick was fresh out of the hospital, on a feeding tube and very weak. But he felt up to sitting at the ballpark with blankets and recliners on the grass. He embraced the opportunity to enjoy the atmosphere: a full harvest moon; the smell of hamburgers and fries; the perfect temperature; the cheers of the parents; the crack of the bat; the call of “SAFE!”; the spectacular view of the Wasatch Mountains as a backdrop to the ball fields. Moments of being back to normal, moments of serenity, moments of family.
Three months before Nick was diagnosed, he had enlisted with the Utah Army National Guard, just after his 18th birthday. The plan was to attend drills one weekend a month, boot camp in July, lock in a position for Apache crew training, college for 4 years (he had already been accepted at both the University of Utah and Utah State University), and finish with flight school. Once diagnosed, this was all put on hold. However, his sergeants all remained very close to Nick, bringing him military scrubs and medals to the hospital. With the help of Nick’s grandma, the Guards also arranged for Nick to take a 2 hour flight on a Blackhawk helicopter – a true thrill. Later it worked out that one of the weekend drills was being held before a round of chemo (#8), when he usually feels pretty good. So, with the permission of his sergeant, he attended the drills, participating in everything except the 2 mile run (darn it!). He came home with bruises on his back from doing sit ups on the hardwood floor and he was exhausted. On Sunday, he was at it again for another full day. He collapsed once he walked through the front door at home. He said it was the verbal public acknowledgement from the master sergeant, in front of all the soldiers, thanking Nick for his heart (most soldiers didn’t even know he was in the middle of treatment) that made it all worthwhile. Even cancer can’t hold back these moments of determination and internal fortitude.
Alveolar rhabdomyosarcoma, vincristine, etoposide, adriamycin, ifosfamide, mesna, maxillectomy, resection, viable cells, radiation, tumor board, second opinions, ANC, neutropenic, Hickman port, transfusions, MRI, CT, PET, bone marrow, surgery, biopsy, malignancy. Monumental moments of confusion.
Beautiful moments of kindness: It is the nurse who brings me a chilled Diet Coke at 7:30 a.m. after a long night in the hospital; it is the PR guy at our local hockey team donating 100% of the cost of our tickets to the Huntsman Cancer Institute as well as introducing Nick to the entire team; it is the get well letter and lei Nick received from a 3 year old girl in Hawaii; it is a special “gratitude rock” sent by a 6th grader; it is 6 of his closest friends visiting the hospital to play rambunctious games of dice until after midnight; it is the maintenance man helping me find a fresh cup of coffee at 5:00 a.m. in the hospital; it is the 40 get well letters written from our church youth group; it is the neighbors and friends that offer to let our daughters spend the night, without hesitation, when there is an emergency; it is the cab driver who frequently drives my husband in Chicago who brought back a sand sculpture from the Holy Land; it is the people who post words of encouragement on Nick’s blog; it is the airline pilot who made a pen out of wood, sent along with a card that says, “Tailwinds Forever;” it is a breast cancer survivor sending Nick a huge package of fun things to offset the side effects of chemo; it is his 16 year old sister making him a blanket out of flannel camo material; it is his 11 year old sister showing him no mercy in Uno; it is my husband giving me unconditional love, support and freedom for me to be where I need to be.
Moments of chaos or moments of balance? Staff meetings, laundry, email, grocery shopping, presentations, birthday parties, travel, softball practice and tournaments, conference calls, church, dry cleaning, weddings, cell phones, haircuts, house guests, dentist and doctor appointments, elementary school music recitals, parent-teacher conferences, writing newsletters, hockey games, paying bills, watering plants, feed the dogs, romance, lunch with girlfriends, seeing a movie, school shopping, payroll, fix dinner, tennis tournaments, prom, room mother, funerals, clean house, change oil in car, snow blowing, overnight hospital stays, braid hair, workshops, research, date night, holidays…
While finishing dinner one night, our 16 year old daughter asked if we had any 3x5 cards at home for her homework. No. She asked if we would go get some for her. No. We reminded her she could drive herself the whole ¾ of a mile to the store, but she lamented, “But look at me! My hair is a mess, I have on sweats, no makeup – you never know who I may run into and….,” until Nick finally said, “CARLY! I have ONE eyebrow! No hair! No eyelashes! I’ve been to the store TWICE today!” In a moment of perfect perspective, she smiled, put on her shoes and went to the store.
So many moments, yet all are temporary. It is only the learning from the moment that remains in my heart and mind. The sorrow and pain are fleeting, if I consciously envision my hands letting go after the moment has passed. There is another moment waiting for me and it could be hope or peace, ready to replace the moment just released.
Moments have made me stronger. I have a stronger attitude and power of gratitude; a stronger awareness and knowledge base; a stronger stomach; a stronger annoyance of trivial complaining; a stronger appreciation of time; a stronger marriage; a stronger ability to love my husband, my children, my friends; a stronger faith in God.
Our family embraces the theory of the Quadrant Living Experience in our effort to learn and share. We try to surround our home with examples of the power of positive thinking, living in the moment of “now” and to always be grateful. I choose to try to release fear, anger, bitterness and confusion so I may let in love, trust, healing, forgiveness and friendship, as we all know “negativity and light cannot occupy the same space at the same time.”
It was Nick’s choice to control his vision and attitude towards his health and future. He has learned of the power of prayer, visualization, gratitude and perseverance; he has lived a journey he did not choose, yet captured his experiences as he is establishing his own legacy; he has earned my respect and my admiration as I humbly watched my boy grow into an amazing young man; he is giving back though his volunteer work with the children’s oncology unit at Primary Children’s Hospital, to share his experiences with those new to the world of cancer and maybe, maybe bring some peace to a child’s heart.
At this moment, one year after the initial diagnosis, there is no evidence of disease to be found in Nick’s body.
With endless gratitude,
Lori Brower
For more information on Nick’s ongoing experience, visit his blog at
