I was recently included in a pool of ladies that was asked about how best to organize help for a family that had been struck by catastrophic pediatric disease. I’ve been asked that a few times now because of our own experience, obviously. But, also, I think because many witnessed how everyday life for my kids and husband carried on smoothly while I was in Memphis with Eli. What a great example of teamwork and Christian service it was. Being on the small end of large families, even under normal (shamefully ignorant and naive) circumstances we were stressed and stretched thin with maintaining daily activities of all the kids and ourselves. So, when the sky fell, our life as a family unit became divided and we were lost with no direction or focus. Under the weight of the sky we were overwhelmed with and confused by critical health information about Eli, all the while being flooded with help and concern from our family and friends. It was so comforting and was a welcome distraction that definitely helped to tie loose ends of emotions. But, it was, nevertheless, a distraction. It is tough to accurately describe the height and depth at which we received communication in some form almost hourly for a few weeks, and daily for months. It was phenomenal to me, still beyond my comprehension. On top of it, we had to deal with what Eli was enduring, and the lives of our other three kids and my husband had to continue on. Businesses and small companies operate at the level of interaction and activity that I faced each day without the reality of life-threatening disease victimizing their child. It was excruciatingly stressful for our family to be separated, and separated while fighting this evil. But, as those of you that have followed us these two years know, there was what I called a “machine” in the background that was working, driving, directing and focusing on our family at home. A kind of surrogate team that made sure all the areas of normal daily lives were taken care of for Vic and the kids. It is one of the “perks” for being a member of God’s family, to have brothers and sisters that love and care about you enough to interrupt their own lives to take up your flag. And, in our case, those brothers and sisters were not limited to the congregation at which we are members. We were supported by Christians from many different congregations with most of our connections outside our home congregation being through the Christian
|Playing monster trucks, still and always.|
school that our kids attend. I have been hesitant to try to name the members of the “machine” because I do not know who all was involved. It was intended to be stealthy and efficient and to reduce stress for me as I was in Memphis with Eli, so information shared with me was “Need to Know”. So, you and God know who you are and I have a special place in my heart for you even though I don’t know who all of you are. But also know that people were watching, and noticed that the kids and Vic and the house were taken care of. They see what being a member of God’s family means, and want to use your example as something for which to strive when helping others. What a great example of servitude. So, when asked about how to establish help for a family, I never know quite what to say because I was not privy to the organization or running of it. I know it took a small army in the beginning to get the house under control, which I don’t know who took the lead in that, and then there were regular volunteers for some of the household duties and the kids long-term. A key to the success of the machine was Melissa, who I have written about many times before, especially during Eli’s treatment. She was the main channel between me and the machine and a kind of substitute for me at home. I hesitate, again, to use my experience with the machine as an example for anyone else to shoot for because of her. She was the vital oil in the machine and I can’t imagine that there are too many people like her, so without her I don’t see how it would work as it did for us. She is deterred by nothing when it comes to helping someone and has a calming, reassuring effect on people in need. This paramount role in the machine can only be filled by someone who is willing to split her own family time in half, basically equally add another family to her own duties. Melissa probably talked to Vic as much as I did, and she came to know the sitters for Caleb, directing them and making sure their duties were fulfilled. She kept up with the tutor for the girls making sure they had what was needed for school. She knew if the kids were sick, or if she suspected a sickness. She either kept or had someone keep the groceries caught up, and not just groceries in general, but the kind of food the kids and Vic actually ate and used. That role has to be someone that knows the displaced mother well enough to make decisions without asking. And, be selfless enough to make decisions and give direction according to what she believes the displaced mother would do, not according to what is easy for her to do. Knowing this, knowing that things at home for your children are as close to normal as possible lightens an incredible load on your mind when you are hundreds of miles away living a life removed and facing stressful days. From the few comments I would catch along the way from conversations with Melissa, the volunteers were like soldiers on-call, just waiting for the word to clean something or cook something or do anything anywhere. They took pride in their part of all of it to do what was needed, not what was easiest. The whole set-up, I think, must have been a marvelous thing to be a part of and to witness. I can only speak to the relief it gave my heavy heart at the time, but as to how it actually worked, I don’t really know – which is part of the design of it. I can’t imagine that it can be easily matched, though it is a wonderful goal and guideline for service to those in need. I will never be able to thank those involved enough.
So, here we are one week out from our next 3-month MRI scan, which is about one year from when Eli came home on September 14th. It has snuck up on me this time with the distraction of the fashion show fundraiser, but the boys and I will leave sometime after lunch Sunday and I am hoping to time it where we can attend church at Cherokee Sunday night. That little congregation has always been such a cheer section for us and I don’t know any of them – but they are family just as I wrote about above. Some of you may remember that they had a Welcome Home group on the highway in the little town as Eli and I entered Alabama coming home a year ago. How my heart warmed when I saw them waving signs and cheering. It felt so good to be on our way home. So, I hope that it works out to visit when we leave for Memphis on Sunday. I think it would be fun to do an like an “Eli Tour”, take the family around the country visiting different congregations that I know have kept up with him and have had such a big part in his healing. How cool would that be? Vic would bust a neck vain thinking about how much money that would take. But, I’m not so sure about living out of a pop-up. I can sleep on a kitchen table converted into a bed for two nights and I can walk down a dusty path to the bathroom for two nights, but I think we would need to rent like a full-out RV for a tour. I’ll mull that.
The Fashion Show was one of the biggest check-marks I’ve ever… checked! It was a huge effort, but I think it went very well and I am proud of the $3,500 that we raised. The Friday before, everything was going suspiciously smooth. I had a great decorating crew that was whipping it out, the gift baskets for the silent auction were amazing and displayed wonderfully. Friday I was feeling pretty good. Then Friday evening, it was nothing short of a disaster. I am rarely deterred when my course is set, to quit does not set well with me, but I was so tempted that Friday night to throw my hands up and say, “Ok, I was wrong. I don’t know what made me think I could do this. Please, everyone go home and thank you for your efforts. We are done here.” I was about to freak out at how unprepared I had us. The script for the show was just not as far along as I thought due to time constraints of everyone involved. And, I was distracted with other things about the show and didn’t communicate with the script writer like I should have. Without the script, a play-by-play of two hours, we were clueless about how and what to practice. So, Friday night I sent everyone home about 7 p.m. then about 10 p.m., I began taking what we had written and re-writing. I wrote almost 5000 words from 10 p.m.
|Our emcee Brandon Pressnell holding the mic for Eli.|
to 6:41 a.m. when I emailed the script to our emcee (I know, you are thinking 5,000 words seems short compared to some of my blog posts). I slept in the computer chair about 20-30 minutes, maybe more, it’s hard to know, but I barely got it to him in time for me to get a shower and get up to the event center by 8 a.m. for our ONLY real practice before the doors opened at 9:45 a.m. Then when we had that, everything fell into place. All the players, every single one had on his or her game face and hit a home run. There was not a player at any position, big or small, that did not perform above what I had hoped. It was so great, that it made it hard to remember how much work and frustration it took to get there. As a cancer mom and as the instigator of the event, my heartfelt thanks to all those involved to make it happen and to all of those that were able to contribute and to attend the event. It was a success in every way. My running team continues to raise money for St. Jude, so if you want to contribute you can donate directly to St. Jude through our team at www.northalfootsoldiers.com. We are still short of our goal, but this week I am hopeful to bring in a little more by making Childhood Cancer mailbox ribbons for donations. September is Childhood Cancer month and we have a big week planned. I know! When do we not! Mayor Ronnie Marks of Athens will sign a proclamation Wednesday afternoon declaring September 14th (the day Eli came home last year) as Childhood Cancer Awareness Day in Athens (If you can stop by Big Spring park in Athens, across from Athens State on Hobbs Street at 3:30 we would love to have you and as many people as we can come show support. It will not take long.). So, I will be at the Grasshopper downtown Friday from 2-5 making mailbox ribbons, and then in front of Casa Blanca Mexican restaurant downtown from 5:30-8. If you would like to help, let me know, or stop by and pick up a ribbon for the month of September. Eli and I are also collecting hats to take back to St. Jude when we go this time, making good on our promise to always take something back. These do not have to be new, but nice and clean. You can drop off at the Grasshopper, or if you are an ABS student there is a box in the 3rd grade room, or if you are members at Madison, there is a red tub near the annex.
|Doing reading homework.|
Eli seems to be doing really well. He has started the school year off with great grades. He is not taking karate right now. We are trying to save some money, so Caleb is the only one still taking because he was the only one that seemed to like it. I hate to put this in print, but I feel pretty confident that we will have another clean scan. I am dreading hearing about Eli’s growth, or lack thereof. He and Abbey have always been less than an inch difference in height, and she is quite a bit taller than him now. They will do the growth testing and bone age testing this trip and I really, really dread it. I dread them doing it because they crank up his blood sugar and crash it for the test, and I dread hearing the results because I kind of know what to expect. It seems that no matter how much we celebrate his success, we are always reminded of the loss of some kind of hope or dream that we had for him – as in this case where prior to diagnosis he was projected to be about 6’4” or so. But, I have to always keep those thoughts in perspective, and remind myself how minor his height really is, especially when they do have a treatment to replace that deficiency to help him reach at least a pretty normal size. I guess, really, it is not that his height matters to me, right? But, what does matter to me is that I feel like he has had his share of challenges and we know will face more. So, under the umbrella of thankfulness for his healing and an appreciation for our blessings, I do feel the need and the responsiblity to pray that any challenge for him be lessened or removed. With due respect to all the mothers who face loss and who face horrible realities with their children who have been victimized by cancer, I am the mother of this child and I am responsible to petition for him. No one can hold up their own situation in comparison to another’s because we do not know the purpose or plan God has for any soul, so we do not have all the information. We can only be good stewards of what we are given. We were given Eli, and will always go to God on his behalf for whatever he needs to have a successful life on earth - one that is happy and healthy and leads him and others to a home in heaven. To be blunt, I will not feel guilty to ask God to continue blessing him, but that doesn’t mean I don’t have an appreciation for the gift that is each day. Please, remember our prayer event for September 10th, which will be the day Eli has his MRI at St. Jude. We just ask that you find 60 seconds during that day to say a prayer for him. Please, remember him on your prayer list at church, too, as we get another scan behind us. Thank you all for your continued interest and support.