Monday, April 1, 2013

Eli lead "Anywhere with Jesus" as his song,
and read Luke 12: 22-28 for his Bible reading.
I decided to make a to-do list tonight, and at the top of the list is “make a to-do list.” I haven’t done it yet, because I wanted to post, but as soon as I do I will check off number one. I don’t know what number two is yet because I have not completed number one and, frankly, I am procrastinating. I don’t want to see what that list looks like. There will, really, not even be a number two because every item will be tied for number one. The paper will just poof into flames because every single item will be number one, each chore will be on fire. That’s how I weed out what needs immediate attention: “Is it on fire?” If the answer is “yes,” then I do that to-do right then. Melissa and I will ask that of each other sometimes when we are bouncing off each other what we are trying to accomplish at the moment. But, it has gotten to the point where every hour I am putting out a fire; I am going to die from to-do smoke inhalation. Thankfully, with my new perspective, when you peel back the outer layer it’s all good stuff, but it always involves a self-inflicted responsibility or commitment to someone or something else. I do have a bit of a new challenge in that I am going to have to add as one of the number ones my own health. I have a nagging health issue that is bothersome, but I have got to find a way to
We like to eat at the Rain Forrest Cafe.
 address it regularly or it is going to get really ugly. But, it is far down the list of number ones. It’s like in the summer when I’m putting sun screen on all the kids – by the time I lather up four kids, I either don’t have time to put it on me or am tired of putting it on anybody, so I don’t get any. So, by the time I make sure Eli (and the other kids) have what they are supposed to have health-wise, I don’t have time for me – as in literally, no time, only the 24 hours to do it all. Plus, I’ve used up my limited brain power and focus ability to concentrate on Eli, so I have no cognitive capacity left to understand or focus on what I’m supposed to do for me. So, I put it aside until my energy regenerates which doesn’t and isn’t going to happen. Trust me, I’m not saying I’m some sort of selfless angel. I can spa and bon-bon with the best of them (which the bon-bon
Gotta do the Lego store.
thing is part of my health issue. I plan to blog about it soon). I just don’t have literal time to concentrate on something for me. And that’s not complaining (which I will address later) that’s just telling you how it all shakes out. But with that said, I plan (hope) to make a concentrated effort this week to have a good week toward the doctor’s goal for me because I don’t want to spend all this time saving Eli for me to just miss out on the prize. We are coming off of spring break, which meant that some of the fires had to just slowly burn until I can get back into my normal routine. We spent our second Easter weekend at the Lads to Leaders convention in Nashville, Tennessee, and we plan for it to be a tradition for our family to attend either by participation in events or by support for our home congregation. Last year, the convention fell
In the Gardens at Opryland Hotel.
during the six week break between radiation and chemo for Eli. He and I were able to attend as planned, but he was so sick. We kept a wheelchair close for him. He was not eating anything hardly at all by this time, but was not on his TPN feeding tube yet, so he was very weak and nauseated. The girls reminded me that last year we visited our hospitality room and prepared a to-go bag of cookies for them, but in the elevator Eli puked and the only bag I had with me was the one with the cookies. We did not go back to get more cookies then, so they made sure that was righted this year. Last year, he was also suffering from an inguinal hernia that was painful, and we didn’t know at the time, but his shunt was pulling too much fluid from around his brain and causing bleeding. He would have surgery for both of those soon after the convention then. Still, he held up so well last year, and this year no one looked twice at us – well, except those playing “I spy Eli.” We had a little game on Facebook during the convention where anyone on his page that saw him could take picture with him and post it. It was fun… for us. But, he held up as good as anybody did and it is a tiring trip. Since Vic can’t go to the girls’ 
events, I have to race from one end of Opryland Hotel to the other because, of course, the events are not scheduled near each other. So, I have to depend on the hope that someone from our congregation will be in the room and can watch my daughter for me, maybe record her effort, and stay with her until I can get back to her. This is all assuming that I know where I am going. I have decided that Opryland Hotel is purposefully designed to be confusing. I can’t figure out the purpose yet, but I’m sure it has to do with either making money or not spending more money. This year, since Vic and I both judged an event to help out, I had to depend on a friend to keep the boys while we did our part. Sleeping arrangements were fun, and really, who expected to sleep. We could only afford the one room (which they are tiny), so we squeezed a cot in for one extra, and then Caleb slept between either me and one of the girls or Vic and one of the girls. I was actually fighting a really nasty cold when we went up, not feeling well at all, and Vic took two nights with Caleb in the middle. He can sleep through church with Caleb climbing on him, so I figure surely he can sleep in the bed with Caleb throwing an arm on him. By next year, the kids may be too big for us to sardine into one room. We juiced while we were there, trying to keep up Eli’s dietary regimen as close as we could within our limitations, but still he had too much unhealthy foods like pizza and chicken fingers and cookies. I am happy to report that – probably due to the pizza and chicken fingers that he does get too often - he has outgrown his dress pants. I know, that’s big! He is still slim, but he is a 10 slim and 
Wow, how cool would this be.
not an 8! I can’t tell that he is getting any taller though. His age at the convention does not compete, but receives recognition certificates. He participated in Bible reading and song leading. He is timid and still reads pretty slow, but just getting him to do it is a big accomplishment. The girls do Bible Reading, song leading, and Puppet Theater. Each of their puppet teams place third. It was a tiring weekend that was wonderful. I sometimes have to remind myself to stop and look at Eli; to purposefully remember that he has been dragged to the edge of death, dangled there, and then pulled back in. I am shamefully forgetting the sights, sounds, and smells of that battleground as I am distracted by benign fires at home. I remember how my senses were so attuned to our surroundings at LaBonheur and St. Jude those first few months. I wrote in early posts about hearing a child laugh while I was in the cafeteria at St. Jude; seeing little bald heads peeking out under blankets; smelling the distinct odor of creamed corn, which was the preservative used for the stem cell transplants. But, to see him now, filling his number three slot in our family as we would expect him to be, is to easily forget the dark path behind us. I do find myself sensitive to complaining, both by me and others. If I complain about something (which hopefully, I would only do jokingly), I either catch myself or I think later “good grief, I’m silly and spoiled.” I am neutral to hear others complain about trivial things, but I do find myself making a mental note that the person had probably - and thankfully - never faced a challenge. While I am humbly thankful to God for us currently being on a bright path, please pray that I never take for granted the many gifts rolled up in our trial with Eli. After having already given the gift of His own son as a sacrifice, we are thankful that God continues his blessings by way of healing and health for Eli, which is more than we even really thought was physically possible for him. But also I am thankful for the gift of seeing God’s answer to prayers. Many pray diligently and genuinely, expecting God’s answer on earth in their own time as they asked for it. When the answer
How much cooler would this be!
 doesn’t come as, or when desired, that understanding and acceptance can be a trial all its own. So, I am not just thankful every day for God’s answer, but also that He has allowed us to see His answer satisfying our human need. Please continue to pray for Thomas as he struggles with a new chemo and some breathing issues. A little three-year-old at another local congregation was diagnosed with leukemia, I think her name is Kate, please pray for that young family. I don’t know this little boy’s name yet, but I have learned of another seven-year-old in Arkansas that just had surgery to remove a medulloblastoma. After losing seven children in two months that I had been following, I have yet to refill my prayer coffers with more names, but I am contacted regularly about new kids that have been diagnosed. Sadly, I can’t keep up, and it is so hard to keep it all straight. Thank you for your attention and effort for Eli. Please, share his page and invite others to the blog. Prayers are the difference here, and I cannot stress enough how much we need that and how appreciative we are of your efforts to get those for us. You can go ahead and mark your calendar for June 5 as the next scan, just in time for summer.
They couldn't believe the Easter Bunny had something waiting for them.

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