Four years ago Anna got her gas tank made by OB1 Quixote and signed by Britbikers at the 3 State Ride:
"Last Friday night (not last night) we met David Duke, his daughter Emma (Dear friends and supporters of our family during this time and David is a BritBike member. Britbikers have been a huge support system for Anna and I have posted about them before.) and Miss Lisa (Anna's former ballet director and a dear family friend).
I didn't post about this before as we had the MRI and I was gearing up for all that, plus I was trying to get my pics off my camera hard drive. Haven't done that yet and am gonna post an Iphone pic but I wanted to thank them properly before more time got by.
Not only have they all been a huge support this entire time, for Anna's birthday they went all out with a tshirt fundraiser! I posted on here about the tshirts too. Will make sure to post a photo of one of them.
Anyways, David brought Anna's gift which included a very, very generous financial gift from that to help, but the BritBikers also restored a gas tank and customized it just for Anna!!!! THEN they all signed it! And the shirts were their official Tri State Bike Ride shirts so even though my girl wasn't there physically, she was on their backs and in spirit!
This group is just dang outta this world amazing. Amazing.
Following is the note I wrote them but I wanted to thank them publicly.
Words are just paltry little things here. They do no justice.
The Mott Family LOVESSS you guys
Holy flipping WOW!!!!
You guys are freaking crazy-amazing!
Just thought you should know that and also that you should know that we are eternally grateful for all you have done for Anna and our family. To do your shirts with Anna's face and name on them was such an honor.(Beeeeuteeeful shirts, by the way.)
THEN, you go and do a fundraiser for her. (SO much help for her medical expenses, which seem to be the gift that keeps on giving.)
And THEN, the gas tank.....OH MY. (The most precious possession she now owns. A gorgeous, unique, creative gift that took a lot of time to restore and sign, that is sitting prominently in her room, to be kept for always and forever.)
On top of all these things, you guys have been an unending source of support (financial and verbal), encouragement and prayers for almost a year now. To a family you didn't even know!
You all are the best people around.
We are forever grateful and forever honored.
Thank you so, so much.
I love Robert's Limericks so I wrote a poem!
The Motts, they had a little girl, When she got sick it changed their world. She's fought hard, but not alone, And now they say the tumor's gone. They offered support, love and to pray. The Britbike peeps, they sure don't play! Some special folks those bikers are, Those who live near and also far. Whether messaging or sending cards, Flowers, gifts or such cool bards. Britbike never left her side, And even took her on their ride! The Motts, they are blown away. And plan to pay it forward some day. These Britbike peeps aren't regular folks, Nope, they are the most special blokes!!!"
Sorry for the lack of updates, but Anna of late just sits around.
We did get to see Anna this past Sunday. Brother Aaron is going to college (full ride) to Brenau University in Gainesville GA, and the Motts had a going away party.
Aaron is going to study nursing because of his experience with Anna.
Melissa's words -
If you have not been around Anna for a while and saw her lately (especially yesterday) you can see she's not quite her normal agreeable self anymore. She's not the same eager to please young lady we always had, and says "no" now, more than "yes". She doesn't happily converse as she used to and conversation isn't always what she's up for these days. (Sorry to all our friends who tried to talk to her yesterday and she wasn't having it.)
We cannot get her to dance anymore, ride horses, or much of anything. She even often fights us when we tell her it's morning and time to rise. We have given her lots of grace in these areas. A lot because we realize she's tired and we want her happy, and a lot because we are tired of fighting her and we are worn down and out.
When she was going through her awful chemo and getting her to eat was paramount, the ONLY person she would eat for was Ms. Lisa. So Ms. Lisa came every single day, brought her food, and fed her. She literally got her though not getting a feeding tube.
Yesterday before she left, Ms. Lisa asked Anna if she would consider walking with her sometimes for exercise. I honestly thought the reply would be a "heck no". But guess what? Ms. Lisa got a "yes"!!!!
So while so much has changed, some things never do. She will still do anything for her Ms. Lisa!
Greg, Anna, and Lisa
Ella and Anna. Ella resembles her sister when Anna was younger.
Anna and Emma. My daughter has been a faithful friend to Anna, and I am very proud of her.
Anna and Jordan. They have known each other their entire lives. Anna told Jordan she had wanted to be a pediatric nurse before the brain tumor hit...
Greg, Melissa, Anna, and Emma discussing giving Anna a buzz cut.
Five years ago today, Miss Anna Mott was rushed to Children's Healthcare of Atlanta, where she would be diagnosed with a pineoblastoma , among the rarest of brain tumors.
Melissa's thoughts on this anniversary:
So, today it’s exactly 5 years since Anna was diagnosed with brain cancer.
In those early days, we were shell-shocked, in disbelief, ignorant, and naive.
Thank God for being naive.
As we learned more about what we were facing, we chose to get information only on a need-to-know basis.
I will never regret that.
Had we chosen to know all the facts, we would have quickly found out that the overall survival rate for a pineoblastoma, according to St. Jude, is about 60%.
That 40% chance that she wouldn’t make it is a huge number when you are talking about your own child.
Not sure my heart could have taken the risks with enough courage, had I known.
But you know what?
She did it! She’s still with us. Today is 5 years and she’s here.
Aren’t you deemed a survivor at the 5 year mark?
This girl of ours is certainly that!
We will never stop thanking God for these 5 extra years we have been given with her. And we will never take for granted how blessed we are when so many precious ones aren’t with us today that should be. We have been given a gift and we are so grateful.
Today, on this 5 year mark, Anna and I would like to tell you all 5ish things you may not know about her cancer diagnosis:
1. I asked Anna if she had words to say and she is just adamant that even with all she has lost, she’s happy we made the choices we did and that she’s here. She credits all the love and support she received with her recovery and feels like the love got her through when times were the toughest. Not feeling alone has been huge for her, and for us. In those early days in the hospital, and even into the next year, everything was so critical and such a blur. I would sometimes go days with no shower, especially in the first month with all the ICU stays. In rehab, our days were so long and hard, I was a walking zombie. And on the neuro floor before rehab, we had so many nights she was rushed down thinking there was a brain bleed or some other event going on, I spent more time in a lead vest than I did sleeping. I know I didn’t get out even 1/4 of the thank yous I meant to and that still really bothers me. But please know that every meal, every gift, every message, email, text, every hug and visit is in our hearts and you are so loved and appreciated. I feel terrible about that to this day.
2. Life will never again be “normal” for Anna. She will require constant care every moment of every day, for the rest of her life. Her blindness is caused from damage to the optic nerves. They will never regrow or regenerate. It is irreversible. Most of the time, I’d say 90% of it, Anna is in a state where she does not realize her life is so changed. The other 10%, my heart cannot bear. At least we think she doesn’t realize it that much. Sometimes I think she’s pretending just to save our feelings. But we can never know. Her siblings have all assured us that when we are gone, they will take her and take the best care of her. That isn’t a worry her dad and I have, ever. And that’s the best feeling.
3, The day Anna collapsed here at home and we took her to the ER and finally found out what was wrong with her, we found out she also had a seizure and a brain bleed. And she had insane pressure on her brain. We were told that our baby had an insane tolerance for pain that most people could never endure. Maybe that’s why her tumor had reached baseball size? Then she had 2 surgeries that were 12 hours+ each, a stroke during surgery, contracted a bacterial brain and spine infection in hospital, endured 33 brain and spine radiations, had 7 months worth of highly potent chemo cocktails, and more. To this day we don’t know exactly which of those put the final nail on her eyes and cognitive abilities. Or if it was more than one thing. But I am haunted every single night by the question of why and how, even after 5 years. I am terrorized by the fact that one night, she was trying to tell me she was going blind. She had tons of pressure build back up with fluid in her brain…to the degree that they had to drill in her head right there in our room…no time for the OR. I think she was trying to tell me, and I knew something was wrong but just couldn’t understand. She kept saying one word, “disappearing”. And I just didn’t get it. Her poor father is haunted by her asking him, as she was wheeled into the first surgery, if she would be ok? With him looking into her deep green, sea glass, able-to-see eyes, and saying “yes” when he didn’t know. And then it being “no”. He feels like he lied to her in their one last conversation. Our daughter is here but our daughter died. Every day we battle these ghosts and keep moving.
4. The craziest things happen when we take Anna out. When she was little, she wanted to be a missionary. And I think she is, of sorts. Once I took her into TJ Maxx with me and of course, stares abounded, but the cashier literally started crying and came round the counter to us. She could not take her hands off Anna. She followed us to the car and I swear she was gonna go home with me had I not finally just closed the door! She said Anna touched her inside. We get that all the time. A lady one day at Del Taco came up to us as we were having our bean burritos (Anna’s fave!) and asked could she just sit by Anna and pray for her. Of course we said yes! That has happened so many times. Once at La Madeleine, a lady kept staring and finally came over to us. She began prophesying over my girl. Really cool stuff! And it’s so weird. When she was diagnosed, many suggested that we contact the news or put her story out there. I didn’t want to. I didn’t even make her Facebook prayer page. A dear friend made it while we were in the hospital. Every single news story, magazine article, etc has been organic. Somehow, they just happened. I told God if He wanted her story told, He would have to orchestrate it. I was not going to make one thing happen in that area. I also promised him that if He did, and I thought it was from Him or was something to help others, I would comply with it. One thing I turned down was a Japanese film crew, FROM Japan, coming to my house to do a show on her. She had had a seizure a few weeks before and it was not in her best interests. Plus, you should have seen me try to understand that producer via Google Translate. Nuh uh! It would have been a hilarious fiasco! And that was no small feat, telling them no. I had to get mean as I kept saying it and they kept saying they were coming anyways! So, every time her story has been shared, it’s been organic.
5.While we do try to find the good and we have completely learned that it’s the little things in life, and concentrate on that almost always, some days we all just soak in the fact that we know our life sucks compared to what it was and what we wanted it to be. Our family has a literal crap ton of stuff to deal with on a daily basis. So, yeah, now and again, we feel sorry for ourselves. Not often, oh no. That’s not permissible. But sometimes. Just keeping it real. On a certain level, it just sucks. And yeah, we come out of that by counting our blessings and reminding ourselves that God has a plan, but some days we wallow in it. On those days, we get down. We forget that so many have it worse than we do and have had struggles beyond ours. We play human on those days. At those times, we don’t look at the bright side. We struggle financially like nobody’s business. The ever revolving bills and red tape that go with a cancer diagnosis and lifelong burden are never ending. Having a kid with cancer will ruin yo monies. I have had countless migraines over meds being denied or having to call over and over and over to get the copays right on prescriptions. And don’t even get me talking about going out in public. Ok, maybe I will. Taking Anna out anywhere when she’s in anxiety mode is the most stressful thing ever. Like, you’d rather get the flu, tetanus and a penicillin shot all in the same butt cheek, at the same time, rather than do it. One doctor visit, as we walked in the door to a super large, super crowded waiting room, she screamed, “I HAVEEEEEE TOOOO POOOOOOP.” The whole room was clear on the point. (When anxiety hits, it affects the bowels most and there is zero percent chance of reasoning her out of it.) She would be HORRIFIED if she could step outside her person, as her old self. But she’s messed up, so her filter is gone. Before this, she wouldn’t even tell ME if she had to go to the restroom! And I have to admit, it wasn’t pleasant for me, dealing with all the horrified looks, either. But this is our life now. This happens almost every time we go out in public. So that’s why I have started turning down so many social events. Her anxiety, subsequent issues stemming from the anxiety, and our fear of the anxiety have stalled us out for the time being. Sometimes I get asked if I could change it all and she not get cancer, even with all the good that has happened and what we have learned and grown, would I? I’d like to tell you I have achieved some Christian place in Jesus that’s on such a high plane that I might be the next one called in a chariot into heaven. But I have not reached that place. So you betcha I’d go back to 5 years minus one day ago. I wouldn’t wish this life on my worst enemy.
You may have recalled a friend of mine painted a picture of Anna and Melissa for Anna's birthday in 2016.
Originally Posted by David in Atlanta
Last Sunday, my family and I had lunch with Anna, where Anna gets her birthday card with a check.
Officially, $3,600 was raised for Miss Anna's 20th birthday.
She actually got more, as some of the good folks at ADV Rider sent birthday cards with checks.
Along with her check, Anna also got a piece of art.
Earlier this year, I contacted a college classmate (David Terry http://www.davidterryart.com/ )to inquire about drawing a picture of Anna for her birthday.
I told him about Anna, and asked how much a drawing would be.
He asked for a few pictures.
I sent them to him, plus some of Melissa's stories.
The idea was, he would quote me a price, and I would see if I could scramble up enough funds to pay for it.
He wrote me back, and told me he would do the drawing no charge.
Here is the picture I sent him:
Here is what David drew:
Notice that the hospital bracelets have been removed in the drawing.
I got a bit down giving Anna this gift, as she is blind...
Melissa was overcome by the drawing.
Melissa's note to David Terry:
That moment was almost holy. I remember it distinctly and I can still feel every emotion I had then, as I held my Anna. I can see it also in your work. I cannot thank you enough. What you have given us is beautiful and priceless. May God bless you richly as you have certainly blessed us.
In the next two weeks, Anna will go back into the hospital for a 24 hour EKG. The doctors are trying to determine what is causing her seizures. To combat the seizures, she now takes even more medicine, a side effect being anxiety attacks.
Anna's seizures and anxiety have really put a crimp on what few activities Anna enjoys - dancing and horseback riding. Sadly, Anna for now mostly just stays at home...
I will keep you posted.
God Bless Anna Mott
David has again painted a picture of Anna, simply because he wanted to...
Here is the photograph:
Here is the painting:
In David's words:
“In This World” (Portrait of Anna Mott; pastel, watercolor, and pencil. 2017). A mutual Sewanee friends commissioned me, a little over a year ago, to paint Melissa Mott (whom I’d never met) and her daughter, Anna. I was told the hard facts before beginning the painting (which I, of course, simply gave as a gift…it was a pleasure and sort of an honor to be allowed a look into this family’s life. I admire them greatly). Melissa and her husband have five children. Anna, who was an accomplished young dancer, was diagnosed with and treated for a brain tumor. The treatment left her blind. Tough, hard facts, indeed (and I don’t pretend to know even half of them), but I’ve found myself regularly turning to Melissa’s quite-regular Facebook postings to restore my own sense of perspective and, unexpectedly enough (given the circumstances) to witness a capacity for joy. The Mott family (and Melissa in particular) seems to have that in spades. In any case, I’ve just finished another portrait of Anna, which I’ll be giving to her mother, who’s a truly admirable woman. I truly don't know anyone who could do what she does with such obvious (to me, at least) grace.
The only song to accompany this (and I hope Melissa will play it for Anna) is one of my favorites. Do yourself a favor and go to this really lovely performance by Mary Chapin Carpenter at Wolf Trap, years ago…
In this world there's a whole lot of trouble, baby In this world there's a whole lot of pain In this world there's a whole lot of trouble But a whole lot of ground to gain Why take when you could be giving, why watch as the world goes by It's a hard enough life to be living, why walk when you can fly
In this world there's a whole lot of sorrow In this world there's a whole lot of shame In this world there's a whole lot of sorrow And a whole lotta ground to gain When you spend your whole life wishing, wanting and wondering why It's a long enough life to be living, why walk when you can fly
In this world there's a whole lot of cold In this world there's a whole lot of blame In this world you've a soul for a compass And a heart for a pair of wings There's a star on the far horizon, rising bright in an azure sky For the rest of the time that you're given, why walk when you can fly "
And Melissa's response:
My dear friend and super talented artist, David Charles Terry, has done this piece of our Anna. I don't even have the ability to tell you all what this means to me. And what his friendship, encouragement, and support means. This brain tumor has been a nasty thief, but it has also been a generous giver. David is one of those gifts. Even when the worst happens, God is still good, ya know?
Anna is doing better - she has started riding horses again!
In Melissa's words:
Oh happy day!
Anna hasn't ridden in over a year, the effects from her last seizure having made her unmotivated and super anxious. Daddy helped remind her this past week how much she loved to ride and what it did for her, so one small text to Miss Cindy and boom! Today, she was back on Tanja, with Miss Cindy teaching and coaching her.
I cannot tell you the joy this and Miss Cindy bring to our family! Those closest to our family know the struggles Anna has had since that seizure. This is just huge!