Loving Tiara: A local author’s compassionate tribute to her beloved daughter
By LANA JOHNSON
Tiffani Goff is a retired home stager, interior designer, blogger and now a published author of her memoir Loving Tiara. She is appearing for a special program and book signing on Saturday, Feb. 15 from 12-3 p.m. at Seaside Gallery & Goods, 124 Tustin Ave., Newport Beach.
Her book takes us on a journey of being a loving and compassionate wife and mother of three daughters – Tabitha, Tiara and Trinity and her husband, Lou. At the age of 16, Tiara succumbed to Tuberous Sclerosis Complex (TSC), a rare genetic disorder, causing her severe spasms and seizures throughout her life.
I read Tiffani’s memoir and caught up with her, a Newport Harbor High School graduate who grew up in Newport Beach, to understand what she and her family shared raising Tiara with so many complicated medical challenges, and celebrating their life together. I pulled some of her most notable excerpts from her book.
“I would rather die taking care of her (Tiara) than give up on her. I am her mother, her voice, her strength, her advocate, and her biggest fan. I am also a wife and a mother to my two other beautiful girls. They all need me to be strong, so they can pretend our lives are ‘normal.’ Even when I feel like dying inside, I carry on, because that is who I am. This is the story of loving Tiara.”
Excerpt From: Tiffani Goff, Loving Tiara, Apple Books
Click on photo for a larger image
Photos courtesy of Tiffani Goff
The touching book cover of “Loving Tiara” with Tiffani and her daughter, Tiara
Q: Can you take us though your journey as a parent and having your child diagnosed with a rare medical condition? What exactly had Tiara experiencing such severe complications and who did you reach out to for medical treatment? How long did this transpire from the diagnosis before she tragically passed at the tender age of 16?
A: Tiara was diagnosed with Tuberous Sclerosis at seven months of age after six weeks of trying to figure out what was wrong with her. She was falling behind developmentally, was having numerous daily episodes of lunging forward while screaming out and was no longer making eye contact or engaging with family members. After multiple failed attempts trying to determine the cause of these issues, her pediatrician at Harbor Pediatrics said she needed to be admitted to CHOC right away. Once they hooked her up to an EEG machine at CHOC, the issue was glaringly obvious. She was having infantile spasms, a rare and devastating type of seizure, generally associated with Tuberous Sclerosis Complex (TSC). After seeing the EEG results, they did a CAT scan of her heart, brain and kidneys. They found three tumors in her heart but determined they weren’t interfering with function and numerous tumors in her brain, which were causing the seizures.
“At Tiara’s one-month (year-old) checkup, her pediatrician, Dr. Krumins, noticed a large white patch on her neckline. He thought it was a typical ash-leaf birthmark but said we should keep our eye on it.
“At her three-month checkup, she was starting to fall behind developmentally. She didn’t follow or track with her eyes, she wasn’t moving like a regular three-month-old, and her neck control wasn’t great. We weren’t super worried, since all kids progress at their own rate, but we were now on alert. When she was four months old, it became apparent Tiara was not like other babies. There was definitely something medically wrong with her.”
Excerpts From: Tiffani Goff, Loving Tiara, Apple Books
Tiara after she survived brain surgery at Mariners Park – shooting hoops was her passion
TSC is a genetic disorder that causes benign tumors to form in the major organs, including the eyes, brain, heart, kidneys, lungs, thyroid and skin. All the organs must be monitored throughout the life of the patient. The most critical issue was stopping the infantile spasms immediately, because there is a direct correlation between how long the child suffered from infantile spasms as to how severely delayed they would become. Infantile spasms can cause a child to become severely developmentally delayed. The medication Tiara needed to stop the infantile spasms was not FDA approved at the time. Hence, the only way to obtain it was through a drug study at UCLA. So, from the moment she was diagnosed, our lives were forever changed. I now had to manage uncontrolled seizures, a heart condition, brain tumors, developmental delay, becoming a regional center consumer, physical, speech, and occupational therapies and doctors who didn’t know how to treat a child with TSC.
Q: I have only one daughter who is now 36 and I can’t imagine the pain you endured with Tiara’s suffering. Please share her everyday challenges but also her joys. Her name alone...shines!
A: As for her tragically passing away at 16, it wasn’t a tragedy. She received many miracles throughout her life and should have died at least three other times, but she was a fighter and kept making it through. She was incredibly strong willed, which was a curse and a blessing. She was in a drug-induced coma on a ventilator at least six times in her short life. She survived a brain surgery which resulted in her brain swelling so much during recovery it caused her traumatic brain surgery and two severe strokes. Her physicians said that if she lived, she would never walk, talk, breathe, or eat on her own. She walked out of the rehab home three months later, with her trach removed and her G-tube taken out a few weeks later. Her ability to recover often shocked the medical community – she was known as a miracle girl. She was a “frequent flyer” at CHOC and UCLA, and the nurses and doctors at both facilities were our extended family. Because she continued to suffer from intractable epilepsy her entire life, never going a day without a seizure, she was always on a concoction of medications that had serious side effects and were extremely hard on her body. At the end of her life, she was taking 30 pills a day and still having seizures. She lived with constant respiratory issues and was on oxygen almost 24 hours a day for the last year of her life. Tiara living to be 16 was a miracle and a true gift. I knew she was dying the last six months of her life, and when I finally put her on hospice, she only lasted two weeks. She needed my permission to let her go, and when I knew she had lost all quality of life, I gave her to God.
“All through Wednesday, we took turns lying by her head or her feet, and holding every part of her body as we prayed for her to pass. She was no longer wearing her oxygen and was struggling to breathe. I kept suctioning her to help with the secretions, but her body was shutting down.
“Early Wednesday evening, her soul left her body (January 14, 2015); I don’t know the exact moment. I just know that when Tabitha and I slept with her that night, we couldn’t feel her. It wasn’t like it had been the previous nights when I slept next to her, clinging to every ounce of her being. As we watched her struggle to breathe, I sent a text to my family that said, “Her soul is already gone, but her body has not finished the process yet. I hit send and looked over at her.
“She took her last breath at 8:18 a.m. She was sixteen years old. The hospice nurse showed up forty minutes after she passed, with an amazing art project for us. She brought a canvas and some paints. We gathered around Tiara’s bed and I dipped Tiara’s hand in blue paint and placed her handprint in the center of the canvas. We then took turns dipping each of our hands in a different color paint and layered our handprints around Tiara’s. The finished project is the most valuable piece of art I will ever own.”
Excerpts From: Tiffani Goff, Loving Tiara, Apple Books
Immediately following Tiara’s TSC diagnosis, she started receiving physical, occupational and speech therapy through the Orange County Regional Center. Just before her third birthday, she transitioned into the Newport-Mesa School District. They placed her at Harper Preschool to continue her early intervention services. When it was time to start elementary school, she was placed in a special day class at Killybrooke Elementary. Tiara would progress developmentally and then would have a status seizure lasting four hours and would lose all her skills. She had to relearn to walk on several occasions and was mostly nonverbal until she was about 6 years old. She had the most expressive face, so I could usually figure out what she wanted or needed. This process of making strides developmentally and then losing skills continued throughout her life. I think her development peaked at about 9 years old and then started to decline as her condition evolved. At 9 years old, she could write a few letters of her name, identify about 20 animals, count to 20 with a few mistakes, identify colors, sing lots of songs, run, shoot hoops, swing a bat, and talk well enough that family members could understand what she was saying. Tiara had the most incredible smile! She was always smiling and had so much self-esteem; she was the envy of her sisters.
Tiara figures out how to tickle her mom, Tiffani
Whether she was 300 lbs., which she was at the end of her life, or completely emaciated, both side effects from her anti-epileptics, she would prance in front of anyone who would watch, striking poses. She was feisty, funny and always needed to be the center of attention. She flirted with any teenage boy who came over to hang out with Tabitha, her older sister. Her younger sister, Trinity, who arrived two years after a vasectomy, was her best friend. Tabitha and Trinity were always vying to be Tiara’s favorite person. She wore a diaper her entire life, loved music, dancing, coloring, ripping up magazines and having parties at our house. She was a total party girl and loved to get dressed up with costume jewelry, sunglasses, hats, anything that was dramatic and directed all the attention towards her.
Q: You mentioned you and your husband are almost empty nesters. Tell me a bit about your family life and what you enjoy doing together, with your girls and specifically your ties to Newport Beach.
A: My husband, Lou, and I are almost empty nesters because Trinity, our youngest, is a senior at Mater Dei. We moved out of Newport six months before Tiara died and now live in Mesa Verde. I couldn’t work while caring for my girls, and after the recession, we almost lost our house. We were finally able to sell the house for enough money to pay off the mortgage and start over. My life was so empty after Tiara passed away. I started a staging business. I have a law degree, but have always loved interior design, a natural talent given to me by God. This business allowed me to immerse myself in hard physical labor, replacing my caretaking role with Tiara. After the botched brain surgery in 2011, Tiara never returned to school, and I was her primary caretaker. Taking care of her was physically exhausting, and I needed to replace that loss with work.
We were able to sell our house on Redlands (in Costa Mesa), because I completely transformed it before putting it on the market. I removed all my bright decor, decluttered, painted the walls white or gray, and my real estate agent was blown away at the transformation. In my mind, I made it boring so that it would appeal to a wide range of buyers and it worked. After Tiara passed, people came out of the woodwork, offering me jobs even though I hadn’t asked. Within two months, I was life coaching a Newport lady, organizing someone’s home, decorating someone else’s, and I was so confused. My real estate agent told me I needed to start a staging business that was different than other stagers, so I did. I worked with homeowners’ existing furniture and just updated accessories, decluttered, added new pillows, and moved furniture around, so the flow was better. Because I was more flexible, cheaper and worked harder than most stagers, my business took off. You can look at my website, www.twigdecor.com to see my style. I recently retired from staging and have transitioned into accepting interior decorating clients only. My goal is to become a full-time writer, but I can’t afford to turn down all decorating jobs at this time.
Lou and I are still recovering financially and are homebodies, so we spend our free time at home together. We have been married 28 years this month, and it is a miracle we are still married and like being together.
Q: How did blogging about your days with Tiara’s suffering help you heal?
A: I started my blog in 2012 after Tiara had survived the brain surgery. She was alive and stable, but we were at home together all day, and it was a depressing time in my life, and I needed something, so I started the blog, tiffani goff at home (tiffanigoff.com). Growing up in Newport and going through the public school system (Newport Heights, Ensign and Harbor), I knew lots of people and became very active on Facebook, sharing my posts. Because I was so honest and transparent, I gained a large following rather quickly. Tiara would often be recognized as I pushed her in her wheelchair around Balboa Island or as she played basketball at Mariners Park.
Listening to music with her earplugs was one of Tiara’s greatest pleasures and calmed her through many seizures
Q: Beginning to write your book in February and finishing it in November is a fairly short process time wise. What motivated you to just sit down and write and how did you get it published?
A: As for writing my book so quickly it was in celebration of my 50th birthday. The real estate market had slowed, so my staging business was slow as well. All my friends were talking about big plans for their 50th birthdays, and because I didn’t want to throw a big party, I couldn’t afford it, I tried to think of something more monumental. My blog readers had been asking me to write a book for years, and I kept promising to do it, but I just hadn’t. Last February, I decided I would write my story for myself and to honor Tiara. I promised myself to finish the first draft by September 11 (my B-Day) and completed it early on August 19. Thank goodness, because the editing was more time consuming than the first draft. My goal was to have it self-published by October 27, which would have been Tiara’s 21st birthday. I didn’t make that goal because I couldn’t rush the final edit. I worked 10-12 hour days writing, editing and figuring out how to self-publish, and it was released on November 20, 2019. My goal is for Loving Tiara to become a bestseller and for me to share Tiara’s incredible story with the world. It is practically impossible to have a bestselling book, but if I could take care of Tiara, I figure I can do this.
“We celebrated a Mass for her at Our Lady of Mount Carmel Church on Wednesday, January 21, 2015. I think nearly four hundred people showed up to support Tiara and our family. I gave the eulogy, my final gift to her, and then we buried her, in the coolest turquoise casket you have ever seen, at Pacific View Memorial Park in Corona del Mar. Lou and I bought the space next to her grave, so we will be buried with her when it is our time to see her again in Heaven.”
Excerpt From: Tiffani Goff, Loving Tiara, Apple Books
I hope you’re having a wonderful Valentine’s Day. It’s the one day a year that celebrates romance and love.
