Thursday, November 16, 2017

(Thank You installment #2. It's lengthy, but hang with it, please).

Late one cold winter night, or really it was the earliest morning hours, a few years ago, I sat in front of a computer screen scrolling, as I did many nights for almost six years. Title after title of clinical trials for drugs to treat pediatric brain cancer rolled up and disappeared into the top of the screen. My eyes darting from one side to the other, skimming for key words like “medulloblastoma,” or “relapse,” or “leptomeningeal,” or even just “brain,” looking for cause to click on a title. The current relapse treatment that Eli was on at the time had run its course, and won us 14 months that we had been told we wouldn’t have. So, there I sat again during those dark hours, looking for the next stepping stone to yield us another unknown amount of time with him. Any time I zeroed in on a potential trial for which he would qualify, one of the first things I would do is scroll to the bottom of the trial page to find the location or locations at which the treatment might be offered. If the trial was a real possibility, I opened a second window in my browser for maps and focused on the city of the hospital, then put in the search “church of Christ.” I had to know that if I took him somewhere away from home, there would be family nearby. Now, that wasn’t a deal-maker or breaker, but a factor in how I would prepare for the several months I could potentially be in a location where I knew no one.

I have been reading about the “perks” of being a member of God’s family. It’s pretty easy to identify the spiritual perks - number one being the eternal home of heaven that is offered to those who choose it, the christian’s inheritance as the adopted sons and daughters of the Father. And, then there is grace and mercy from the Father that bridges our humanness to that reward. Even the spiritual perks that we enjoy on earth, like the open avenue of prayer, and the forum of the church assembly. But, what about being spiritual siblings? What are the advantages of sharing God’s house on earth?

Writers of the scriptures often use the “body” as a metaphor to describe the collective of the church. So, according to that metaphor, when the toe is stubbed, pain is felt throughout the body, and all members rush to do what they can to help. When the body attempts to lift a heavy load, all members are engaged to carry it - lift with your legs! The collective feels the joy of the one, the collective feels the pain of the one, the collective carries the burden of the one. This a deliberate design of the church for its existence on earth that complements the deliberate design of humans. If you are not invested in God’s family on earth, I hope that through our journey you will see the value in it. If you are a member of God’s family, I hope that through our journey you see how important you are to your siblings who are suffering or hurting, or are in need in some way.

This is Eli's class's class shirt. I love that they quoted his
speech, "Now that's what I call blooming where you are
planted."
Furthermore, if you have followed our journey, then you see how it’s done! The support that we received at home from our church family - which included several churches, and our school - just seems unprecedented to me as I’ve read and kept up with many childhood cancer families. We are in a kind of unique situation in that we attend a large church, whose members have some kind of connection to other churches, and a small Christian school,
Eli's class with their class shirts, it says "Live like Eli" with
the bloom quote on the back.
which, because of the students and teachers, has connections to many churches. So, when you connect all of those dots, a phenomenal web of care and attention appears. And this unique situation is by choice, it didn’t just happen. We chose to be active members of a strong congregation long ago. And, we chose years before Eli got sick to make the necessary sacrifices for our children to attend a school where the people had the same Christian values as we do. God guided our decisions well before Eli got sick so that we would be in relationships with people that He knew we were going to need. So, when the sky fell, we were not alone lifting it, or carrying it.

Since Eli’s passing, our church family continues to minister. At Eli’s first relapse, it dawned on me that some could view the relapse as the nullification of prayer. Even more concerning for me was how children would view it. The children who knew Eli, and the children who
came to love Eli through their own church, or school, or family, had been working at prayer. They were literally working at it. These kids were diligent, genuine and adamant that Eli be healed on earth. What was going to happen to their young faith when this is the answer God gives. I have been determined from the start that Satan would not gain anyone from our experience, and that Eli would take people to Heaven with him because of it. A good while back, I talked to one of our elders’ wives, who is a counselor, about hosting a children’s grief seminar to help kids with Eli’s loss, but also with understanding loss in general. So, a few weeks after Eli’s passing, our church hosted the “Bloom Where You are Planted” seminar for kids, and adults. This named for Eli’s Roof Tree speech. We were given a beautiful handmade wooden box that was used at the seminar that has Eli’s picture sketched on the lid. The kids wrote letters for us at the seminar, so I keep those in it. I am so thankful to have congregational leaders that recognize and respond to need. Furthermore, I am thankful for the good that continues to come from Eli’s journey. To know that Satan is taking a beating, is what sustains my peace. 

Eli’s been gone for over three months. It’s almost like a dream, still very surreal, and it may always be. I do have these little, kind of flushes of tears that overcome me unexpectedly, not really bursts or anything dramatic, just the sadness leaking out sometimes for a minute. But otherwise, doing as well as one could be expected to do, I guess, staying very distracted, as I have mentioned. The kids seem to be doing fine as well. Our family is preparing to celebrate Eli’s birthday, December 3rd, and we have something neat in mind that will be a good distraction for us, and help others as well. So, stay tuned for that as we are working with a couple of local groups to pull off something pretty cool. And, if you haven’t seen Joe’s suggestion for the 12 Days of Christmas reflecting the “Forever 12” sentiment, we want everybody to be prepared to do a good deed for 12 days starting December 3rd. Can be big or little, doesn’t matter, just to remember Eli during his favorite month of the year (because it was his birthday month, and he LOVED Christmas, as most kids do).

I wanted to express our gratitude for the help and support we received through the years,
and continue to receive. It’s been busy for these last three months with the foundation, and with trying to focus on the other kids, make up for being inattentive these last several years, and trying not to miss anything with them going forward, so, I’m embarrassed that I’m just now writing it. I almost hate to because I will surely leave something out now that time has passed, so please forgive me if I forget a good deed or help that was given to us. The volume of good deeds in support of our family was (is) overwhelming, and rarely let up at any point for over five years.

Over the years, we have personally received thousands of dollars to supplement Vic’s cut in work hours as he had to and chose to be with Eli or the other kids while I was away. Vic was always very prudent in spending those funds as was needed for bills, or for Eli specifically
either in what he needed or wanted. This cut-down on Vic’s
stress as the provider for our family, and helped maintain some normalcy for the kids as we retained our home, and were able to keep them in a school that they loved. Vic’s work has been just wonderful to us, and we are thankful for the company, and the people there.

We received thousands of dollars worth of gifts in the form of hotel points, gas cards, meal cards, days in a condo for vacation, etc. All of these helped us with travel that was necessary for Eli’s treatment, and necessary for Eli’s quality of life, and helped our family as a unit. The group of moms that organized themselves to be in charge of my kids while I was away, the group of ladies who took care of our home, cleaning it, doing laundry, buying groceries. My sister who provided peace of mind by taking good care of our mom who was in a memory care home with dementia the latter part of our journey and passed away while I was with Eli in Georgia. The weight of mail that we received can not be measured, nor can
the number of gifts that were sent just to put a smile on his face. The Legos, the diecast cars, the toys, the shirts, the hats, the list is infinite.

I am so thankful for the new relationships that have grown out Eli’s situation. Most notably, of course, all things Ford Mustang, the owners and workers. That little comment in the quietness of
a Target House apartment where he said the Ford Mustang was his favorite has ballooned into thousands of dollars being raised for childhood cancer through those relationships, and it’s still growing. And, we have a new hobby that, at least that Vic and I enjoy together, and have made many friends through that interest. We appreciate all the State Troopers and Law Enforcement groups that Eli really felt a part of and always reminded me that he would be going to the academy one day. The people we have met in other cities that are now special to us, people we have met through trips we have taken, all the unique places we’ve gotten to visit. These are all experiences that we will never forget, and that will always be favorite chapters in our lives despite the cancer.

For me, personally, I think I have been most touched by the willingness, and readiness of each of you to stand up when needed. I have a kind of “wave my sword and save the world” personality, so how uplifting for me to have such fighters that respond, and respond with such fervency. We have done a lot of good together over the years for cancer kids and their families, and I’m talking about before we started the foundation. We had several drives for different things, the trailer load of household goods, the literally one ton of laundry detergent, over 100 remote-controlled cars, over 300 DVDs, halloween costumes, hot
wheels, food - again, I can’t remember it all without going through old posts. Just so much money and help that you raised and provided for others that we befriended at hospitals and saw they had a need. I really just can not do any of you justice in a post, but know that you all have changed my life, changed my attitude, and trained my eyes to always look for the good. I truly understand Acts 20:35 “In everything, I showed you that by this kind of hard work we must help the weak, remembering the words of the Lord Jesus Himself: ‘It is more blessed to give than to receive.’” It is “more blessed” because of the good it does for the giver.

If you were unable to make or stream Eli’s memorial service, I hope that you will set aside time to listen to it (I’ll add as many links as I can at the bottom). That morning we left our neighborhood surrounded by blue ribbons on all the mailboxes showing their love and support for us. It was such a comforting sight, organized by our neighbor, Becky Sandlin. Then a procession of 46 Mustangs, one corvette, two trucks and one slingshot from Athens, lead by the Huntsville Police Department’s ROUSH Mustang escorted Vic in Eli’s Mustang with Eli’s cremains to our home congregation of Madison Church of Christ. It was an incredible sight, and a precious effort. The news media even came to record it. Inside, the building, a sea of Eli blue filled the building as most people either wore their Eli shirts, or something blue. Tables of memorabilia, scrapbook by two precious friends, and a beautiful display of some of Eli’s things on a table up front awaited the cremation box. The service was lead by Brandon Pressnell, a precious friend and one of our ministers, who spent a lot of time with us in preparing, and just did a fabulous job, as we knew that he would. Kraig Behel, a friend to us and to Eli, lead the beautiful song service of congregational singing. He and his wife Rita, who also helped with the overall event preparation, spent much time going back and forth with me in getting those selections finalized, and Kraig wrote the poem used in the service. Three of Eli’s classmates, boys that he considered his close friends participated, Lane Glover, Gage Pressnell, and Will Richards. The service opened with two Alabama State Troopers bringing the cremains to the front, and showing their respect in a salute, and ended with an “End of Watch” dispatch from the Georgia State Patrol provided by Lanny Bergeron (be sure you read my blog from August 28, 2017). Family and close friends enjoyed a fantastic meal provided by Pat Mobley and her incredible team of ladies of the Madison church, who also brought much food to our house as Eli was on hospice.

The whole effort to memorialize and honor Eli could not have been any more perfect. And, I know that there were so many people involved that I don’t even know were, or don’t really know to the extent of which they were. And, that’s because of Melissa Green, who you all know through my posts if you didn’t already know her from what she does for you. Over the years, and especially for the memorial service of which she was basically the “director”, there were crises, and even unexpected good deeds, just constant happenings that required on the fly attention for logistics and decision-making. And, to be honest, I’m assuming this just because that’s life, but I, and we, were shielded from most of this because of Melissa. And, if you have never been through such a catastrophic event that just seems to stop your brain from working, then you can’t know how stressful the smallest things can be, even as minuscule as having to answer the door and have a polite conversation when someone brings food. The stress it can cause to make decisions, like for what a kid has to wear for a school program while you need to be thinking about talking to a doctor that might save your other child’s life, or to organize an efficient way to collect money that people are asking to donate, while you need to be thinking about where you are going to live while in treatment in another state. Our family’s daily management as a result of Eli’s situation at times was a full-time job, and that’s on top of dealing directly with Eli’s situation. So, if you’ve done most anything for our family over these last several years, or needed something from me or us at high-stress times, you’ve likely had to “go through” Melissa. I think back to a day in the spring of 2008, before I knew her, before the kids started kindergarten in the fall. I was at my aunt’s house for her grand-daughter’s five-year-old birthday party that Abbey was invited to. My aunt went to church with Melissa, and insisted that I be nice and meet her because she was wonderful, and she had twin girls Abbey’s age. I was like, “Please, please, don’t make me. I don’t care anything about meeting your friends. I just want Abbey to get her teapot shaped cookie, swing a couple of times, then I’ve got to get back to my four-month old (Eli).” But, she guilted me into it. So, Melissa and I met on my aunt’s back porch making awkward small talk about where my oldest went to school as our girls crowded into a porch swing together. How thankful am I for my aunt’s guilting talent! There just are not words for how dear and loved Melissa is to our entire family as a whole and individually. She quieted the noise surrounding Eli’s situation, and lightened the load in ways that were not convenient for her, but in ways that she knew would bring peace of mind to us. It allowed us to save our strength and energy for Eli. I’m trying my best to talk her into writing a book about her experience in dealing with our family. I think it would be helpful and insightful as many people don't know how to help, or what to do for others in situations similar to ours. However, there’s not another one like her, so any attempt to be, would surely fail. We love her, and are deeply thankful for her (and for her husband Bill! Behind every busy woman, there’s a patient man with a truck!).

This will be my last lengthy post probably for a while, unless something strikes me to write about. The key word being "lengthy." I plan to continue to post, especially about our family, and other cancer families, and what our foundation is doing. Please, follow Eli's Block Party Childhood Cancer Foundation page and help us build that. But, my time is getting eat up. Vic wants me to get a full-time job, plus, I have someone that is going to present some of my writings to a publisher, so I want to save any interaction with my muse for that preparation. It’s kind of like when I was at my first 5k, and I saw all these people running up and down the road before the race started, and I thought “If I take any steps, it’s got to count toward my 3 miles.” Ha! So, I feel like if I put any real, dig-down-deep energy into writing, then it should be toward the supposed book that I should be writing. However, as the name change of the Facebook page implies, I am prayerful that Eli’s impact on this world continue and grow, and I work every day toward growing the foundation so that it makes a difference. I love and appreciate all of you, and your interest in following Eli and helping his journey be meaningful.

Here are some links to the service, procession, and a couple of news stories:

This is the prayer service held at our home congregation on August 2.

 This is a link to the memorial service.

 This is Eli’s Roof Tree speech.

 The procession to pick up Eli’s car.

 The procession starting in Athens.

 Drone footage of procession arrival.

 This is the “End of Watch”.


Story from our local paper.