I was honored to interview Tiffani Goff, mother, blogger, author of Loving Tiara: A Memoiron the podcast. I followed Tiffani’s journey with her daughter Tiara who had Tuberous Sclerosis Complex for several years on Facebook as she shared glimpses from her day to day life with an incredibly challenging presentation of TSC, one that would ultimately claim Tiara’s life. I observed her posts in the days leading up to her passing and waited and watched for her to reappear on the other side of this loss. So many of we parents of loved ones affected by chronic life-threatening conditions live with the reality that we may lose our children at some point in our lifetimes and while this is not often the case, it happens regularly.
What Tiffani details is often heart-rending and painful, Treatment after medication after surgery after procedure. In Tiffani’s own words; “So whenever normally work, didn’t work for her. So it was a lot of trial and error. And I think for even families who have a child not as affected (by TSC) as Tiara, that’s the most important piece as a parent and/or caretaker is being able to identify; Is this a behavior from medication? What’re the side effects? What is the actual condition? How is my child feeling when they can’t communicate? That’s the hardest part and guessing and guessing. Am I doing this right? Am I doing this wrong?… but I kind of feel like the best advice, if I’m giving advice was kind of just gotta go with your gut. And you just have to really pay attention.”
Managing a condition such as TSC requires a parent or caregiver become incredibly knowledgeable about various aspects of medicine, A TSC case manager is a person that has learned to traverse multiple systems of care at the same time and bridge the communication gaps between these systems of care in order to make sure nothing slips through the cracks, amassing legions of knowledge about pharmaceuticals, insurance companies, social services, the mental health and behavioral health industry, dentistry, and more in order to insure that all treating are as close to on the same page as possible.
“And when I was dealing with Tiara after the first couple meds didn’t work, and I knew they weren’t working and I realized that some of the doctors, like when a doctor, in the beginning, who’s our first doctor, just picked up and left. I was like, Oh, my, I realized I’m responsible for her. So a doctor can just leave us and he was like our lifeline. And so that first made me realize I have to be in charge here. I can’t just depend, (on anyone) and then when you can’t get visits, so I just put aside my fear. I think that is one of the biggest things for anyone, whether not getting a new job or being afraid to speak up, is fear. And I just was …I am not going to. I was scared, but I was like, forget it. I’m not being scared.”
Tiffani continues throughout the episode to walk us through the timeline of her life managing Tiara’s TSC diagnosis, which got more involved, complicated and convoluted with each passing day but also impinged greatly on the lives of her family, She discusses these challenges as well. Challenges to find balance in the midst of chaos, challenges to stay connected to all of our family members and fulfill our “societal obligations” when our hearts are breaking in pieces daily.
“So I think I just knew Tiara was not going to live forever. So it was kind of like, I know she’s taking up so much time but these kids are here for a reason. I’ve got two other kids and I can’t drop the ball and I knew wasn’t going to be forever. You know, so it was kind of like God was keeping me going because they were going to be here. I knew they were going to be here a lot longer, and I just couldn’t abandon them. And my husband is the sweetest guy in the whole world. But he’s never filled out a piece of paperwork for school. He doesn’t know. He didn’t know any of that, you know, he didn’t even know how to find the volleyball schedule online. So, if I wasn’t going to do it, nobody was going to do it. Let me do it. And then when Tiara was here, then well, you know, I just felt like, I didn’t have a choice. And I was always trying to overcompensate. I would not sleep.”
Tiffani talks as well about coping throughout Tiara’s journey, and in the days following her passing, discussing her faith in this quote that I absolutely love for it’s authenticity, humor and deep wisdom, in my opinion; “And then after Tiara passed away, I went to mass every day. I mean, that’s what it is. There are so many downsides to being a Catholic. But one of the great things about being a Catholic is that you can go to any church in the world. And everyone’s saying the same prayer on the same day and standing up and kneeling. And it’s just like a meditation for me. And I don’t limit myself to the Catholic beliefs. It’s like, that’s my home. I love those people. I go there, there’s so many faults and so much that’s wrong. But it kind of just kind of keeps me centered. Because I do believe in mediums and psychics and I believe if you’re Buddhist, your God is still going to be the same as my God, I just like, being a good person and living with integrity. And doing the right thing is my God. And so, it just happens to be I find that at my church.”
Finally, Tiffani discusses poignantly the final days when Tiara was in hospice an she had an interaction with a hospice doctor; “so when we went home from that visit, on hospice when the hospice physician came over, and I was describing Tiara and her life, and she was only able to crawl (at this point in her life) and he was very quiet. It went on and on. And it was so quiet, and I said, Do you think that she’s going to pass away? Like, what do you think? And he said, “’ I’ve kind of never seen something like this. And I’m having a hard time telling you how I’m feeling (he said), because she is suffering so much, and I can’t believe you can still find joy for her.’” And he said, “I can’t believe you’ve made it this far”. I was like, Really? I mean, he couldn’t talk. I was like, so you think she’s going to die? And he said, “yeah, I don’t know how she’s still alive. We’re keeping her alive.” I was so baffling to me. But it was confirming that I wasn’t crazy because he was a total outside person who’d never met her. And just looking at her, and just the way she was struggling to walk or to breathe and how was like, “I need to let her go.”
The full episode is full of wisdom, humor, honesty, tears and a testament to the inner strength, faith and passion on Tiffani’s behalf, a final quote on the power of authenticity in written form, “it’s going to benefit our whole community. You know, because having this many people read about TSC and I’m sadly My story is, other people’s story. There are other families that live that same story. But they don’t have the way to get it out.”
Tiffani’s links!
Purchase the book! 😊 https://amzn.to/2s7tMLg
Tiffani’s amazon page: https://amzn.to/2QDbvPo
Website: https://tiffanigoff.com/
Facebook: https://www.facebook.com/TiffaniGoffAtHome/
Twitter: https://twitter.com/twigdecor?lang=en
Instagram: https://www.instagram.com/tiffanigoff/?hl=en
YouTube: https://www.youtube.com/user/tiffanigoff
LinkedIn: https://www.linkedin.com/in/tiffanigoff/
https://www.goodreads.com/book/show/48912091-loving-tiara
Indiebound.org
Barnesandnoble.com
https://nonfictionauthorsassociation.com/directory/25788/tiffani-goff/
Information on Tuberous Sclerosis Complex: https://tsalliance.org