Yeah, it’s been a while since I’ve posted. I have tried to write. Actually, I’ve written bits and pieces here and there, but I just haven’t been able to get a post together. This was one attempt at writing this post, but I only ended up getting started:
I don’t even know where to start. I am sitting here during Nami’s first tuber resection (basically his second brain surgery in this round), finally feeling like I may be able to write. I know this post is a long-time coming and I apologize for not writing more frequently lately. My train of thought over the past weeks has been something like this: “What to say? How to begin? What is real…my nightmares…my dreams? It’s all blurred together. Time doesn’t make sense to me. My head is so fuzzy…my emotions all over the place. I lose my train of thought. I don’t make any sense. I can’t string any cohesive thoughts together.”
There were so many moments in the months, days and weeks leading up to the surgery that I felt I couldn’t take another step forward. I was emotionally, mentally, emotionally, physically, and, uh, emotionally depleted. I didn’t know that type of exhaustion existed. I swear that even my hair and nails were tired.
I’m surprised I made it through the last month of school. I apologize right now to all my students who had me last semester as I was not at my best. Actually, I was a scatter-brained mess…times 10. I had hours and hours of…
Well, that’s as far as I got. Now I don’t even remember what I had hours and hours of. Probably hours and hours of being on the phone trying to arrange everything between the insurance company, hospital, doctors, etc. trying to get them to agree to the procedures. So far, I’m not sure what good that did. Since being home, every bill I’ve received from New York has been denied by my insurance. I’m so excited to spend hours and hours more of my life trying to figure this out!
Although we’re already now into a new school year, I cannot move on to future blog posts without writing the next part of MIRACULOUS MAY PART I. It was an out-of-body experience to be on the receiving end of such generosity. The school and community pulled together in a way that I have never witnessed and it was all in the name of our son. Although I was always filled with extreme gratitude, it was uncomfortable for me at first to be receiving so much attention. I finally relented to the continual thought in my head that was yelling at me, “IT IS SO HARD TO ACCEPT HELP! BUT, IT’S NOT ABOUT ME, IT’S ABOUT NAMI. I CAN’T ROB NAMI OF THIS HELP JUST BECAUSE I’M UNCOMFORTABLE!” I was finally able to start enjoying each moment after that because it wasn’t about me. It was about a young 4 year old boy who was suffering from nonstop seizures and a community of loving people who wanted to help him. What was even cooler was that it just happened to coincide with Tuberous Sclerosis Awareness Month.
There are no words to express the gratitude I feel for all the sacrifices everyone made for our little family during May’s fund-raising. Here are some excerpts of what I wrote for the school newspaper:
To The PGHS Community:
Our family has been so overwhelmed with gratitude during the last couple of weeks. We feel such a sense of love and community. I have thought long and hard about what I could say or do to express how grateful my family and I are to all the students, faculty, staff and community for the service they’ve rendered us. But there are no words to express how we feel. Anything I come up with seems trivial compared to the relief that this service has brought to us.
There are too many highlights to mention them all. The rivalries of the penny wars were hilarious and livened up the last month of school. I loved hearing excited students come and update me with news about who bombed whom and how everyone reacted.
I felt like I was pushing a celebrity in the stroller at the carnival. The warm welcome of Nami was amazing. All you students were so great with him and I only hope that he will have such great peers to accompany him through school.
There have been so many heart-warming stories: from people emptying their piggy banks, cleaning out their houses for change, digging through garbage cans and going to neighbors for cans. And then the seminary got involved with their own penny wars competition and went crazy. We loved seeing the gym packed with students and adults enjoying an all-nighter of volleyball. We are grateful to all the clubs and organizations that have incorporated this cause into their programs. What a sacrifice to take some of the light off your fantastic groups to spotlight Nami.
We are in awe of the time and effort that so many people put in, especially during the last month of school, to help us. Thanks to the faculty and staff who are spending valuable time they could be grading or closing up school to support the activities. There are so many anonymous people who have donated items, time and money and this is a big THANK YOU to each and every one of you! The financial support has lifted a giant burden. Even more than for the money we thank you for the emotional support and joy you have given us. There is laughter and smiling in our home. This experience is a bright spot in our lives. Your demonstration that you care has given us courage and strength. We will continually reflect on your goodness as we face future difficulties while Nami endures this incurable disease. I am blessed to be in the company of such great young people for my career. The future is bright in the hands of PGHS students. I’m so proud to call PGHS my school!
Much love from the Vimahi Family
There is no way for me to spotlight all that went on because there was so much. I gave a good overview of many of the happenings at the school in my last post, but believe it or not, there's even more:
- One of the sweetest experiences was with the special education students. No one was more understanding or compassionate toward Nami as these wonderful kids. They have so much empathy. One student frowned so big with sadness for Nami when he met me.
- Companies and individuals from the community generously donated money and goods when they caught wind of the story.
- People used social media to spread the word, and we were constantly hearing from my family and friends how people that they knew heard from someone else that they knew that…
- Poor Rock Canyon Bank was bombarded with more pennies than you can imagine and they joyfully counted them all. I even heard that their workers would throw in some change for the cause. Thanks for helping us out!
- A bunch of darling kids decided to do a lemonade stand in Nami’s name. Thanks kids! Your hard work paid for one of the nights in New York for Nami.
- Whatever secret society sent me these, I am so appreciative. They really brightened my spirits.
- Nami was even featured in the Deseret News: Pleasant Grove Community Rallies Around 4-year-old Boy With Rare Disease (just a side note as you read, he can walk, just not talk ;).