Friday, June 16, 2017
In the history of mother-daughter talks, there are a handful of standard topics for which moms have always prepared and expected. Talks played over and over in our minds, running the gamut of scenarios, so that when it came time, when we had the chance, we would share some kind of foundational guidance, or reveal timely knowledge that would benefit their lives, help them be successful humans. But, not until it was time.
I’ve written before about that first day the sky fell, when I could hear Hg, then age 11, and Abbey then age 9, outside on the trampoline as I first heard the news that Eli had a mass. My knee-jerk reaction was to run outside, and gather them up into the house, like a storm was threatening over their heads. I did run outside to do just that. But, when my bare feet hit the crunchy brown Bermuda grass of December, I slowed my charge toward them, suddenly aware of their playful engagement, frozen at the sight of their innocence. Their lives would forever change on the other side of my words to them. So, I did approach them slowly, soaking it in, fighting to give them just seconds more before I had to talk with them. It was Abbey, of course, that could see it on my face before I said a word. “Is it Eli?” That’s why I wasn’t surprised when it was Abbey who first spoke after I brought the girls out to the porch before our trip to Detroit a couple of weeks ago. “Is it Eli?”
When Eli first relapsed, the girls suspected the seriousness of the situation, and I answered their questions then in general (yes, Eli’s cancer was back, yes, kids die of cancer, but we are doing everything we can to prevent that), but Eli’s appearance and activity contradicted anything that would merit worry, so reality was never real - for any of us. Eli’s symptoms over the last couple of weeks, some of which he has had again today, have made it impossible to protect them anymore. It was time. The girls needed to know the significance of our trip so that they could appreciate it, and needed to know what was going on if suddenly his symptoms were catastrophic. In the history of mother-daughter talks, I don’t even want to imagine what could be more heart-wrenching than our conversation on the porch that afternoon. To witness their faces as my own words soaked into their understanding is a torture not of this world. The sight will haunt me forever. No longer innocent of the touch of true darkness. We sat and talked a while, as they began to process, and they are continuing that processing, each sister at her own pace and preference.
I share this with you because I have become a little afraid that someone who is oblivious or self-serving was going to tell them before they were ready, or before we were ready for them to know. And, they needed to process it with us, and continue needing to go through that process with us, and only us. So, there’s what the girls know, they know it all. It is not an invitation for anyone, not friends, not adult friends, not family, to discuss it with them without our permission, or to coax them into a discussion about death and their feelings. The kids are off-limits to anyone, absolutely anyone, wishing to be an “arm-chair” therapist, wanting to give themselves a pat on the back at the expense of my kids’ emotions by pressuring them into conversations they are too young to properly process without our guidance. In the last five-plus years, I have encountered an array of personalities, and some are equivalent to what we used to call “rubber-neckers” on the highway. A passer-by that just can’t help but turn to look at a wreck, when he just need to keep on driving, be courteous, wave, and maintain normalcy on the road. So, just keep on driving, and let us deal with our wreck. If you see them, just speak and talk to them about fun stuff, regular stuff. They will enjoy that. If they have friends that follow this blog, or parents of friends, the girls just need friends right now in the normal capacity. Knowing you are loved goes a long way for kids. If the girls want to talk to people they are close to, they will on their own, but to coax them into it, is self-serving and rubber-necking.
My sweet Caleb does not know anything, and we plan to keep it that way until the last days. We want him to enjoy normal days of fussing and playing with his brother for as long as he can. Caleb was and continues to still be sensitive to my mom’s death last year, so we know that this is going to affect him deeply, and possibly cause some emotional issues long-term. And, we do not want him to accidentally tell Eli, or to be sad when he’s around him giving it away or causing Eli to ask questions that he would not have come up with on his own. Eli does not fully comprehend what is happening, and we plan to keep it that way. We will always be fighting for his earthly healing, even if it is with prayer and vitamins. I know my kid, and my job as his mom is to create an environment where he feels safe, comfortable, and loved, so this is the best way to do that for him. I’ve known several kids that have passed. Some take it peacefully, and some are scared hysterical and have to be sedated until they pass. Eli would be scared, and we don’t want our last hours with him to be under sedation if it could have been avoided. There is no single right way to tangle with death in your home, but there is a wrong way, and the wrong way is to do it how others tell you to. Please, respect our wishes for this conversation with all the kids.
For me? If you ask me how I’m doing, and I say “I’m fine,” then I’m fine. If I’m not fine, it will be obvious, and I will say, “It’s not the best day,” or I will scream at you, “Leave me alone!” I heard a talk recently, or maybe I read it, from an expert, that encouraged people not to take the “I’m fine” answer from someone who is grieving. That it is our responsibility to “help” that person purge themselves of the feelings they are denying. Wrong! Unless you are intimate friends with the person, (and you know if you are or if you are not, if you are someone this person ordinarily confides in), or unless this person seems open to conversation, it is absolutely not your place to encourage artificial divulgence. So, please, continue to ask how I’m doing, how are things going, how’s Eli doing, but if I say “fine,” then that is exactly what I meant. It’s not a way to get out of the conversation, it is the answer.
If Eli is able, we are expecting to see a doctor in Atlanta on Thursday. But, he has had symptoms again tonight, and I may be anxious from that, but I feel like he may be spiraling now. He had routine bloodwork done today, and his numbers are not great, still. We enrolled him in Hospice care Thursday, just getting the paperwork, some emergency meds, some equipment in case we did have a significant event at home we would be ready. Pediatric hospice and adult hospice are different in that we are allowed to pursue treatment while enrolled in hospice care, so it didn’t hurt to turn it on in case we need it, while we are looking for treatments, and waiting on doctors. So, please, pray that his symptoms remain minimal and fleeting, so that we can get to this doctor in Atlanta, and that his numbers improve so that he can start a treatment of some kind that might get back some control of the disease. Thank you all for your support, and concern for each of us. Despite how it may sound above, I do know how much you all care for us, and how much you have worked in prayer on Eli’s behalf. I, personally, could not have survived some days without the confidence of knowing that I could run to Eli’s page and ask for prayers.