I didn’t really mean to stop writing. But I haven’t posted anything here since July. I actually wrote quite a bit since then, but nothing that struck me as worth publishing. There are 25 posts sitting in draft mode. In November, I wrote a skeleton of a post that said, “This is probably my last post.” I remember what was happening then. I had just discovered that my aunt had died–a year earlier. And a favorite cousin had also died–two years earlier.
Yes, the old place looks a little different. We became aware that our old theme was not, as they say, responsive. That means it didn’t play well with mobile devices. Not only does my site need to play well with mobile devices just because, but also because at my college I happen to be one of two faculty liaisons for mobile technology. I think it would be a little embarrassing if my own site wasn’t mobile friendly.
But that means I have some rebuilding to do. When I switched over to the new theme, I lost my widgets (those things over on the side that perform special functions). I have some of them restored, but others I have to recreate. So please excuse the wet paint. The smell will dissipate soon.
I majored in journalism in college for one particular reason: it was the closest I could get to not declaring a major.
See, I was interested in all aspects of human experience. I didn’t want to have to specialize in anything, because I was interested in all of it. But I went to college when the mantra was first started to be repeated that to be successful, you had to specialize (which struck me the same way the famous advice to Benjamin in The Graduate did: “Plastics…. There’s a great future in plastics. Think about it.”). Continue reading “We’re going to experiment”
I’m sitting in the Intensive Care Unit of Children’s Hospital in Knoxville with my daughter as she sleeps, finally resting after three or four days of what must have felt like drowning for her. It turns out she has double pneumonia. Under the tender ministrations of the medical staff, she is getting better, and although Hannah has taught us that we never know the future, even two minutes from now, the prognosis is good, and we expect to take her home early next week.
As I look at the ceiling, though, I see graphic reminders that many parents who have waited agonizing hours in this room have not been so fortunate.
Instead of empty industrial ceiling tiles, patients see a colorful collage of artwork done mostly by children who have stayed here, whiling away the time and contributing to later patients by relieving visual monotony. It is a nice touch.
But a few of them come from parents leaving behind a memorial. You can easily spot these tiles; they’re the ones with two dates.
They strike me the same way 19th century cemeteries do. Have you ever strolled through an old graveyard and noticed how many tombstones commemorate a child? Some have only single dates for a child who died the same day he or she was born. Many have tiny statues of lambs on top. In some older cemeteries fully half the graves hold the remains of a child, with dates only a few years or a few months apart.
This is a room of hope, not a cemetery, but it is a room that has witnessed countless dramas and struggles, the stuff of movies and stories. Maybe these stories aren’t spectacular enough for the big screen, but for the real individuals involved they held all the impact that a Gone with the Wind or a Titanic did for those characters.
At this moment, two nurses are working on Hannah, and alarms are going off. I am writing because I can’t really do anything else. I can do little for my daughter right now beyond simply being present, and so I turn to writing, a tool that has always helped me make sense of the world.
I don’t know how much time I will have with Hannah. It may be a day; it may be that she will far outlive me. I hold out hope that gene editing may allow her to escape the chains that bind her in this life. (I’m not delusional. I realize it’s a long shot, but a slim chance is better than none.) But I do know that I don’t want to risk one day looking at a tile with two dates and regret that the space in between was so filled with trying to make a living that there was no room to just hold her hand.
I’ve tried to post at least twice a week, and I’ve kept that up regularly for 19 months, except for two periods when I took a week or two off. But I need to turn my attention to other things. I’m not leaving, but I’m setting the conscious intention of cutting back to posting only two to four times per month for at least awhile. Effective communication is my passion, but only because it connects us to each other, and I have some connecting of my own I need to do.
I’m completely burned out, folks. I’m taking a week off from the blog to regroup, catch up on some maintenance, take care of some stuff around the house, etc. Join the mailing list to make sure you don’t miss posts when they come out, and thanks for sticking with us! I hope you find useful information here to help you be the most effective communicator you can be.
Astute readers will notice we didn’t make our usual Wednesday posting last week. My apologies, but at the moment I have to get my head down and charging ahead. We are wrapping up a demanding spring term, and it just makes sense for me to pause for a bit. Other than this post and perhaps a bonus as time permits, we’re going to suspend our usual publication schedule for two weeks. I’ll come back after graduation (May 10) and update you. Thanks for staying with us!
Lots of activity this weekend, because it’s the fall conference for District 63 Toastmasters. I’ll be presenting an education session Saturday morning on “Colonel Henry Robert, Vampire Slayer: Making Parliamentary Procedure Exciting.”
So, I’m focused on getting that ready. I do want to mention, though, that I’m finishing up an ebook to give a right-brained context perspective to parliamentary procedure, and when it’s ready I’ll post a link to it here. When it first goes live, it will be in the Amazon Kindle store for free, so be sure to watch for it.
As you can all tell from my previous post, we have a lot going on right now. I’ve decided to cut myself a break and take a break of a week or two. I still have a lot to say about effective communication, and I will be back, but for now, I need to focus elsewhere for a bit. Thanks to all who have supported us in any way! I’ll see you again before Valentine’s Day.
The state will not be satisfied until either I or my daughter is dead.
That may not be the intent, but that is the effect.
(My apologies that this is not the usual communication-related post. I have decided to go ahead and share through this blog, though, because it helps explain why I didn’t get my usual post up mid-week.)
You see, my nine-year-old daughter is severely disabled. Hannah cannot close her airway (so anything that goes down her throat will go into her lungs), cannot sit up, cannot roll over on her own. She eats through a tube and breathes through a trach, and has to be suctioned every 10 minutes or so to avoid suffocating on her own saliva.
Although our primary insurance would much prefer to pay for home nursing care, since they know it’s cheaper than paying for hospitalizations, the way the policy is written with my employer (which happens to be the state of Tennessee, ironically enough), they cannot pay for it.
During her first four years of life, she was hospitalized 22 times, with the longest stay being 58 days. We did our best to take care of her, but the simple reality is that I cannot work all day and also take care of my daughter 24 hours a day. My wife is partially disabled, and can do little hands-on care for Hannah because of her severe arthritis in her back and hips as well as fibromyalgia. So she was frequently in the hospital with respiratory infections or other challenges.
But when we finally got her on TennCare (Tennessee’s version of Medicaid), which paid for her nursing, she was only hospitalized five times in five years, most of them one-day stays, with the longest being five days. Because the nurses are with her all the time, they have been able to catch issues while they were still small and get them addressed before having to take her to the ER or put her in the hospital.
The state’s other solution would be to take Hannah away from us and put her in a nursing home, and surely no one believes that she would get suctioned there every 10 minutes. She requires meds and breathing treatments around the clock, in patterns that don’t fit the typical schedules of nursing home. She will die in that situation, and it will cost the state much more than what it costs to pay for nursing.
She cannot live without someone with her all the time. She has to have the nursing to live, and obviously home nursing is the cheapest and most effective solution.
But the state has said I make too much money to qualify Hannah for TennCare, and they are going to kick Hannah off. They don’t care that we had to skip meals last month because we ran out of money. They don’t care that I finally sold my high school ring to get enough money to pay for gasoline so I could keep going to my job. If I get a second job, it will bring more money into the household, which will raise the floor for her to get insurance, and it will all go to pay the new uncovered medical bills–in other words, we will go hungry just as often, although I would be working twice as hard.
In light of that situation, it’s easy to understand that we have no savings. If we had savings, the state would have kicked her off sooner, because we had too many “assets.”
The state says that in order to get Hannah back on nursing care, we have to have about $4,000 in unpaid medical expenses. Nursing costs about $1,000 a day (vs. $10,000 a day for a hospital), so we will requalify after only four days, but how can we afford to do that? We don’t have the ability to pay the bill that would follow, so we would be forced into bankruptcy.
Reading between the lines, it seems there is a possibility I could save my life and my daughter’s by divorcing my wife. Then my income would not be a part of the household, and the child support would not be enough to bump her household income above the cutoff.
So I suppose I should add to the first paragraph “or until my family is shattered or we are forced into bankruptcy.”
Most other states have what is called a Katie Beckett Waiver–basically, that means to qualify for Medicaid insurance, you have to show that you would have the required expenses without the Medicaid coverage. Tennessee is one of the few states that does not have such a waiver. The waiver not only would save us the expense, but would also save the state the expense of going through the convoluted process of reapplying for TennCare. But that would be too sensible.
I fear that my daughter will spawn another article like this one and that I will wind up being the one to write, “Tennessee kidnapped and murdered my daughter.”
Insurance is supposed to protect you against catastrophe. Instead, health “insurance” limits care so that everyone can have their doctor visits covered, and so the ones who truly need insurance against catastrophe must go without.
I can’t blame the individuals who have tried to help me through various state agencies. They can’t help it. This is the way the regulations are written.
Is there someone, somewhere, who is able to do something about this situation who gives a damn? Or must we become another in the long list of victims of a bureaucratic, broken system?