I can’t believe it has been as long as it has! Things have been crazy with getting things ready to leave work, moving, getting everything into a storage unit, and then driving to Washington.
It’s been a whirlwind.
Seven days, on April 10th, I spent the day remembering my cousin, Tavi and the legacy she left. Tavi passed away four years – on April 10, 2012. It was and still is the most difficult thing I’ve ever been through.
I should start from the beginning.
We were so excited when Tavi was born. She was the first born of my aunt and uncle. A few months after she was born, some things were noticed. Things like not being able to lift her head, not moving around as much – stuff like that. Test after test after test was performed. After what seemed like an eternity, a diagnosis was given. Spinal Muscular Atrophy, SMA for short.
SMA is defined as, “a genetic disease characterized by progressive loss of lower motor neurons (anterior horn cells) in the spinal cord, resulting in symmetric muscle weakness and atrophy.”
Tavi struggled; physically. Over the years, she had multiple surgeries. A G-Tube going into her stomach to help her eat. A tube going into her throat to help her breath. I remember getting an email from my uncle one day with him expressing his wish that she could cry out for him in the night when she’s having a nightmare. My heart shattered.
The things that we take for granted are endless.
A changing moment was when she was at a doctor’s appointment. At every previous doctor appointment, there was always an “if.” Tavi wasn’t supposed to live past two, the chances were low. But every doctor would say if – if she were to make it. At this appointment, the doctor said “when.” I don’t even think he knew the impact that would have. For me, that’s when I decided I wanted to be in profession that helped others. For my aunt and uncle, that was the moment when a professional had faith.
When it came time for Tavi to start school, my aunt and uncle fought tirelessly. The school board didn’t think school was something Tavi needed. She couldn’t talk or move, why should she be able to school? That’s what they were thinking. My aunt and uncle were thinking their daughter was capable of doing anything a kid her age could do.
That’s when something incredible happened. The school board said that if Tavi could master a computer in a month, they would have a teacher teach her in the home. Now this wasn’t your average computer. Before the computer, Tavi would communicate with her eyes. This computer allowed her to communicate the same way. There was a sensor that would help her eyes to work as a mouse. And if she looked at something long enough, it would click on whatever she was looking at.
Seems easy enough, right? It can take years to master this computer. And Tavi had a month. It got there later than expected, and then Thanksgiving, and she had a week. One week to prove the school board wrong. We knew she could do it. Despite her physical limitations, she was brilliant.
And she did. And her dedication is an inspiration to all.
At the very end of March 2012, Tavi was hospitalized. Her heart had enlarged and things weren’t looking good. My aunt asked me to help out with their other daughter while they spent their time with Tavi. I was so grateful for that. I spent all of Saturday playing with Olivia at the hospital. I even got to spend some time with Tavi.
When it got late, I took Olivia home and spent the night taking care of her. The next morning, my aunt came home to get Olivia back to the hospital. That morning (Sunday), would be the day when they found out if Tavi could receive a heart transplant. The chances were low, but there was a chance. During that time, my uncle was sitting with Tavi at the hospital.
Our church has a semi-annual conference where we get to hear council for our Prophet and Apostles. It is on for four hours on the first Friday and Saturday of April and October.
While my uncle was waiting, he had a distinct feeling tell him to turn on General Conference. As he did, he heard Elder Nelson (a member of the 12 Apostles) say,
“Be we reminded that a perfect body is not required to achieve one’s divine destiny. In fact, some of the sweetest spirits are housed in frail or imperfect bodies.”
That wasn’t a coincidence. Those words were what helped them get through the doctor’s telling them that Tavi wasn’t healthy enough to receive a new heart.
Another talk by Elder Rasband offered comfort as well. He texted his good friend to tell him of the experience he had with these two talks. As it turns out, this friend new the son-in-laws of both Elder Nelson and Elder Rasband. The forwarded the texts to his friends, who then shared it with their respective father-in-law. Both men said they would pray for our family.
To know that two servants of the Lord were praying for our family was a feeling I still haven’t forgotten.
She was transferred to a hospital that specialized in children cardiology to see what could be done to help her.
However, things still weren’t looking good. On the 8th, I went with my mom to the hospital to say goodbye because I was leaving for my next semester of college. As we were walking to the room, I asked my mom to remind me to get a picture with Tavi. But when I walked into the room, that thought wasn’t there anymore. All I could see was my beautiful, perfect cousin who had taught me so much.
We had bought her a stuffed animal and book prior to going. I read her the book (as well as a few others) and held her hand while I talked to her as I usually did. When it came time to leave, I couldn’t say goodbye.
I was selfish. What was another three months. So I said I would see her later instead. My mom and I walked to the car and she remembered that I had wanted a picture with Tavi. I jumped out of the car and sprinted through the hospital until I got to her room.
Out of breath, I asked my uncle to take a picture of us. Little did I know how much that picture would help me.
My roommate had flown down from Idaho earlier that week to hang out in California with me. The plan was to drive up to Idaho, stay with her family for a week, and continue on to school.
The very next day, Monday, we started driving. We stopped in Spanish Fork, UT to stay with my grandparents for the night. My grandma told me that things were looking even worse. But I still had faith that Tavi would push through.
After we had gotten to Idaho the next morning, my mom called and let me know we had almost lost Tavi. I asked how bad it was. She told me that extended family were getting flights to California. I started to doubt that faith I had before.
That night, I ate dinner with my roommate’s two youngest siblings. Cheddar n’ Broccoli soup. I think it was 7:30 MST. My mom called to tell me news. Tavi had passed. After the call ended, I sat there in shock. Her siblings asked what was wrong. I told them my cousin had passed away.
I got up from the table and ran to the nearest empty room – the bathroom. I fell on the floor and cried. I cried harder than I ever had. I cried until I swore there were no more tears. My hero. My inspiration. My everything. Was gone. The little girl I had spent time with nearly every week with. The little girl I would read stories to. The little girl I would take on walks with my aunt. The little girl who taught me more in her seven years than I thought I could learn.
After an hour or so, I went upstairs to the room I was staying in. It was there that I uttered the most desperate prayer I had and have ever given. I begged my Father in Heaven to help my family. To bring them comfort. I begged him to help me. I was almost 1,000 miles from home and was completely lost. I was physically alone. I had lost great-grandparents before. But never had I lost someone who I was so close to.
How was I supposed to get through this? I prayed myself to sleep. The next morning, I woke up cloudy. But I felt okay. I got out of bed, showered, got ready (hair and makeup included), and went into town.
I definitely wasn’t okay. But I felt normal. I felt Tavi’s arm linked in mine; helping me walk along. I had my fair share of emotional breakdowns, but I felt her with my the entire time.
Even thought I was without my family, Tavi never left me.
When school started, I struggled. When I first started college, I promised Tavi that my education would be for her. In that first week, I was hundreds of pages behind in my classes, was behind on homework, had failed every pop quiz, and felt like a zombie.
I don’t remember where I was or what I was doing, but suddenly all the moments that had prepared me for this popped into my head.
- When I had a feeling to ask my roommate to come visit. Had that not happened, I wouldn’t have gone to school that semester. Honestly, who knows I would’ve gone back.
- Two men, servants of the Lord, were praying for us.
- The picture I had my uncle take of Tavi and I is the last picture anyone has with Tavi. And I don’t think it’s a coincidence that it’s something I was blessed with.
There are so many more, but these were the three big ones that still help me to this day.
When I think back on that day, I can see how much I’ve been affected. And I’m still recuperating from it.
It took me about two years to even be able to take a bite of Cheddar n’ Broccoli soup.
I will always tear up when I think about her and the example she was to me.
I will always stop and look when a butterfly flies by because that was Tavi’s thing.
I will always read Fancy Nancy to her when I visit her grave.
I will always strive to live the way I should so I can see her again.
On August 23, 2014 – My wedding day, she was there. The florist snapped a quick picture before the handing my bouquet off and a white butterfly flew by. I know I’ve said this a few times, but that wasn’t a coincidence.
On April 10, 2015 – Three years since Tavi had passed away (almost to the minute), I graduated with a Bachelor’s Degree in Psychology. That’s not a coincidence. It’s another miracle in my life that reminds me how present Tavi is.
Tavi’s life wasn’t full of coincidences. It was full of miracles. I don’t think it’s possible to have known Tavi and believe there is no God. Tavi showed that Heavenly Father is there and He is real. Tavi proved that we can do hard things. Tavi proved any doubt I could’ve ever had.
Like my uncle said, Tavi didn’t come here to learn. She came here to teach. And that’s what she did. She had a mission that she lived and dedicated her life to. And I will always be grateful for her.
Links:
Tavi’s Story written by my uncle- http://www.tavisfairyfestival.com/tavi-s-story.html
Elder Nelson’s Talk “Thanks Be to God” – https://www.lds.org/general-conference/2012/04/thanks-be-to-god?lang=eng
Elder Rasband’s Talk “Special Lessons” – https://www.lds.org/general-conference/2012/04/special-lessons?lang=eng
More info about the annual Tavi’s Fairy Festival – http://www.tavisfairyfestival.com/index.html
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