Sunday, March 16, 2014

A homecoming is being planned for a little boy in Georgia. The heart wrenching twist is that the welcoming party will be Hospice. Nolan has battled relapse medulloblastoma for three years and now at age 11 he has done his time at hospitals and is going home. I do not know this family, and have only ever cyber-met the mother and I have not seen mention of a dad, but I am just destroyed inside for this young mother who has three or four other kids at home as well. She has always been, and continues to be positive in her comments and what she shares. And, from her posts, it seems that she explores all her options and that she is doing all that she can to leave nothing on the table to the best of her ability. The problem is there are no options. She is not standing at a crossroads, or a fork in the road, or a T, or even a dead end to go backwards. She is standing at a wall with no top to climb over, no sides to go around, no bottom to dig under and no road behind on which to turn around. It terrifies me for her, and it terrifies me for me. The helplessness terrifies me the most, and the infliction of helplessness angers me - the fact that I feel helpless angers me. The inability to make something do something. I am a physical person, and as I’ve said before, I like to put my hand on something and
The kids in Huntsville after the Monster Truck visit.
make it fit, make it work, make it do. I have before prayed the irrational prayer for God to manifest Satan in front of me with the promise that I would tear him a part for these hellacious evils that take the innocent. That this little girl from Alabama would rip the Roaring Lion to shreds and rid the world of the sin that Eve let in. I am confident and hungry for this opportunity to put my hands on him. Irrational and immature, yes, but those kinds of thoughts are what grows in desperate moments. And, I think that is part of my personal challenge in this trial with Eli. That this is ultimately a spiritual battle waged on physical terrain and the most lethal blows to Satan come with every mention of faith and every seed planted in Jesus' name.
Eli and Grave Digger driver Gary Porter. Ei's fav is GD.
One of our ministers a few weeks ago, maybe more, asked me to write something to go with a sermon he was working on. He developed the idea of what it was like for Jesus’ followers on the Saturday between the Friday he was crucified and the Sunday on which he arose. A sad and confusing day for those who had dedicated their lives to Him. So, basically, Dr. Brannan wanted me as a mother to describe the personalized hell in which my thoughts live every day knowing that my child’s life is shortened. He read it verbatim this morning, and someone asked if I could share it again so they could catch all of it. He is so genuine and sweet. It was a tough read for him and he warned me ahead of time that he would struggle. I was honored and humbled that he asked to include us, and even more so that he ask me to write something that he chose to read as I wrote it. I did make
At the Monster Jam show. Seats were up front.
 sure that our names would not be used blatantly so that the kids - ours and everyone else’s - would not so easily catch on. And, I was careful to write mostly in metaphors and implications. But, to those who would know, it would be obvious who it was.

Kids enjoying decent weather.
I have not written as much as I did during Eli’s first treatment when we were at St. Jude. I think my muse moved on to happier topics, and I wish she had taken me with her. Just as we did with Eli’s treatment the first time, I think I used all my best ammo the first go around, and now I got nothin’. I’ve lamented before that I feared the loss of my humor as I was exposed more and more to the waste of this evil, so it will certainly be sad to my soul should I lose my interest to write interestingly.So I struggled with this little project for a couple of reasons: I just don’t write much any more because I’m tapped out and I’m tired. And, when I do write anything of true interest, I usually just kind of let it go the direction it wants to go, and rarely hit a fixed target. But, I really wanted to help him, so I allowed myself to feel the heat so that I could describe what it can be like inside my head sometimes. How blessed we are right now to be carried in the comfort of God’s hand on this road. I see so many heartbreaking situations pushing the limit of quality of life for these children. Eli looks great, he has good energy and he is able to get around normal. All things that are important to us at this time so that we can spend quality time as a family. If you see him, you would not know he is being treated with chemo for an incurable brain cancer. And, how blessed we will be if we have the three years that Nolan has had. So many parents have their children tragically taken from them unexpectedly, without the warning and time that we have. How truly blessed we are to have our eyes opened.
We went bowling while Hg was sick b/c she
hates it.
The following is what Dr. Brannan read within his sermon: “… We are now simply and only on the path to the valley and I am broken-hearted, battle-weary and terrified. To actually go into the valley holding his hand, and come out on the other side without him will be to tear a limb from my body. A piece of me will be gone.”

Then he read, “When did the grieving begin? Like blackness that hides in the beauty of the night, it was in the background unnoticed. But, I was watching. I am convinced that I was because knowing that a monster grows inside him I imprint every second with him into my deepest memory. So, I know that I was watching. But, I wasn’t just watching, I was entranced by hope and busy with the fight, so it wasn’t until I grew weary of holding the trance that I saw reality. He isn’t the gift; it was time with him that is the gift. We had prayed to have this child that would complete our family portrait. But, I dared to ask for this gift and then set the parameters for God to give it. Selfishness - I had to let that go. That must be when the grieving began. I have been grieving the loss of the future I expected for him; the future I expected for our family. I had been grieving the loss of baseball games, math grades, driving a car and girlfriends. I had to let go of college days, a first job and family of his own. I had to peel away the selfish layers of my prayers and offer the core which is that he simply be a light for Christ and rest with his maker. Has that prayer not been granted? There is no mother of a life-saving surgeon or a heroic general that is prouder than I am of my little nine-year-old that will forever be a little boy.”

So, glad Daddy's home. Maybe he can help with the outside
city next time.
If you would like to help Nolan’s family, contact me for details of the kind of gift cards they could use. They are not St. Jude, so I’m sure they struggle financially, although she has never said. Please, remember his buddy Brayden, also fighting relapse medullo and his mom as they are very close to this family. I also learned that Sasha, another child from our town that has been battling cancer, is not doing well with an infection and critical chemistries. So, many.

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