Helicopter

Helicopter parenting versus free-range parenting is the hot new debate. The Meitivs are all over the news because they let their two kids, ages 10 and 6, walk home from school and the park without adult supervision. Parents across the nation are arguing whether this practice is appropriate in today’s world.

The people debating the issue, by and large, are people like me who basically spent our entire childhoods without adult supervision. I walked to and from school from about 2nd grade on; we lived close to a mile from the school in a quiet suburban neighborhood. I went to and from friends’ houses, rode my bike all over the street, and spent vast amounts of time alone, or at least playing unsupervised.

The Meitivs are now the face of a movement called free-range parenting, where parents seek to teach their children autonomy and independence through allowing them to experience times without supervision. Parents who embody the opposite approach are given the derogatory term “helicopter parents,” named for the way they hover over their child’s every move.

I suppose I am a helicopter parent, at least with Gracie. The very thought of letting her go without supervision in uncontrollable environments terrifies me. I recently heard a “This American Life” episode called Batman, where a man who lost his eyes as a young child uses echolocation to navigate the world and is able to perform seemingly impossible tasks. In the episode, the man known as Batman advocates that blind children are only limited by our expectations of them and we should stop rescuing them or teaching them they are limited. There is a point where he visibly cringes as a godmother swoops in to rescue her young godson who is about to find a busy street.

This gave me pause. I do not want to presume that Grace is more disabled than she really is. I do not want to limit her by my low expectations. However, the thought of allowing her to approach a busy street is absolutely terrifying. I can understand why the godmother swooped. I would, too. I can understand those who question the propriety of allowing a 6-year-old to walk home with only a 10-year-old for supervision. (I do think the 10-year-old is probably fine without an adult, and perhaps is safer with another kid.) I can appreciate the worry, the fear, the what-if of it all.

But, is it my place to judge what these people do for their kids? It’s not like they live in inner-city Detroit. (And, there are probably kids much younger in inner-city Detroit with much less supervision.) Is it my place to condemn them for their personal decision involving their own kids? The Supreme Court says no, that parental rights are “perhaps the oldest of the fundamental liberty interests.” The Supreme Court’s decision in Troxel v. Granville held that no one should interfere in a fit parent’s child-rearing decisions.

I would like to think that none of my parenting decisions would be objectionable to an outside observer. I certainly always try to do what’s best for my children, although like everyone I make plenty of mistakes. As far as the free-range versus helicopter debate, I’d probably fall closer to the helicopter column—my children are too precious to me to risk anything. Maybe that attitude prevents them from developing autonomy, but I’m just doing the best I can.

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Sometimes

Sometimes I think I can’t do any more wound care.

Sometimes I wonder what would happen if I just left those dressings on one more day.

Sometimes I just want to scream when I see a fresh bite wound on those little mutilated fingers.

Sometimes I think I’ll go crazy if I have to change one more diaper.

Sometimes I think I’ll go crazy if I get kicked in the face one more time during a diaper change.

Sometimes I think I’ll go crazy if I have to wash one more load of pee-soaked clothes.

Sometimes I think I might have gone crazy years ago.

Sometimes I desperately wish to be a stay-at-home mom, to be able to wash those clothes and fold them and put them away right away, to be able to go for a jog in the middle of the day, to be able to pick up my kids from school fresh-faced and eager instead of worn out and worried about the rest of the work day.

Sometimes I wish I was one of those moms who took her kids to storytime at the library.

Sometimes I wish I could sit there, patiently encouraging Jackson as he struggles through a beginner book.

Sometimes I wish I knew how to bring the joy of reading to my boy, instead of watching the rift between him and reading grow deeper and darker.

Sometimes I wish I knew how to bring the joy of reading to my girl, instead of wondering what she can see on the page and wondering if she’ll ever be able to enjoy books.

Sometimes I wish I were able to enjoy reading again, losing myself in any book that comes my way instead of worrying about all that needs doing.

Sometimes I think I might be able to enjoy reading again if I didn’t have to work late at night.

Sometimes I really, really hate my schedule.

Sometimes I wish I worked for someone who had kids, so my employer would understand that I’d rather be able to work a normal 40-hour work week but this crazy schedule is my only option other than quitting.

Sometimes I wish another job would reveal itself to me, one where I didn’t have to work a full 40 hour week and the employer wouldn’t mind if I had to take a week off to go to the hospital or go to doctor appointments every day or deal with innumerable other aspects of raising a special needs kid.

Sometimes I wish I had actively chosen a career—gone to med school or veterinary school or law school—and then I remember I’d be working even more in any of those professions, and it would be even harder, and I probably wouldn’t have as much flexibility to cart Gracie off to the doctor or spend a week in the hospital or do all sorts of therapies or even just do regular child care.

Sometimes I really wish I had a better option for daycare—our in-home daycare lady is nice and loves Grace but she only watches her two days a week, and Grace isn’t exactly the type of kid you can send to a KinderCare.

Sometimes I wish I could send Grace to a KinderCare.

Sometimes I wish I could send Grace to Jackson’s school, or even just be able to choose what school she attends.

Sometimes I am really grateful for the services Gracie gets at her school, and hope it will continue next year at her new school.

Sometimes I wonder how she’ll ever get through school—how she will learn to read or write (type?) or do math or any of that stuff.

Sometimes I wonder if she’ll ever go to college, if she’ll have a job, if she’ll ever live alone, if she’ll get married.

Sometimes, when things are really dark, I wonder if she’ll live.

Sometimes I’m grateful for all the good things—Gracie is amazing and so smart and incredibly persistent, so she will surely be fine. She hasn’t been on antibiotics for almost six months now, despite a finger that’s keeping me worried. She is thriving in school. We know lots of people to ask for help for Jackson. I do have a job, and even though sometimes it is really difficult, I feel very fortunate to be able to keep working despite everything we’ve been through with Gracie. As for the diapers and wound care, well, somehow I get it done, even when it seems impossible. That’s what it’s all about.

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Divine

Lately, I have developed a new mantra: “All things are divinely timed.”

When we were stuck in traffic on the interstate on our way to the ortho appointment Monday, where the doctor had rearranged her schedule just for us, I reminded myself, “All things are divinely timed.” Traffic thinned and we got to her office five minutes early.

When Gracie’s daycare provider told me her daughter was sick again and I had to stay home with Grace, yet again, even though my boss is getting frustrated at all the time I’m working from home and not in the office, I told myself, “All things are divinely timed” and took a sick day. I’m hoping to have a regular week one of these weeks…

When we had to consider returning to the infectious disease specialists at the other hospital in town, the ones who lied in the medical report and put their own best interests above Grace’s, I tried to remember, “All things are divinely timed.” We haven’t gone there yet and I’m keeping the hope alive that we won’t have to, or that it will go well if we do have to.

Whether or not the divine times anything, it does seem that things generally work out okay in the end. By remembering that, it is easier to let go of the stress of the moment, no matter how stressful the moment really is. We can keep moving, one foot in front of the other, through the deepest swamps and the darkest caves. “Though I walk through the valley of the shadow of death, I fear no evil.” All things are divinely timed.

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Mysterious

We had our first ER visit of 2015 this week—on Easter, in fact. (Of course! What would a holiday be without some health scare, amiright other parents of special needs kids?) When we were sitting in church in the morning, I noticed a faint red blush on Grace’s left hand, following the path of the streaking she had had with the August 2014 infection. I was alarmed, but reassured myself with the thought that every other time Grace has had streaking from an infection, it’s been obvious and bright and this was neither. We finished church (Grace did surprisingly well—for a kid who is not physically capable of sitting still and being quiet, she did a pretty good job) and came home to Easter baskets and an egg hunt. After lunch, Grace had quiet time in her room. When she came out of her room, there was a bright red streak down her hand with swelling. At this point, it was 3 p.m., the roast was in the oven, and our friends were on their way over for dinner. I decided to wait until after dinner to take her to the ER—no sense in spoiling everyone’s Easter!

Dinner was clouded by the stressful thought of another looming hospital stay. Generally, when she has a streaking infection, she is in the hospital for about 4 days. Jackson was sobbing and heartbroken—the stress was weighing on him, too. Poor kid. After dinner, our friends left and I packed a bag with about 4 days worth of clothes for us and all our fancy wound care supplies and we left for the ER with heavy hearts. Well, I should say that Chad, Jackson, and I had heavy hearts—Grace was excited to go to her “home away from home.”

At the ER, we had a doctor and nurse we’ve never met before. This is the problem with ERs—you are not able to establish a relationship with the people there because you’re just in and out. I got the distinct impression that the nurse didn’t believe me about Grace’s insensitivity to pain and suspected child abuse, at least for a moment. It was scary—I have heard way too many horror stories about the CPS system, and even though I know I do my best to take good care of my children, I never want to have someone on the outside judge my parenting skills. Anyway, the nurse apparently checked our file and my story was corroborated, so *whew*—scary disaster averted!

The ER doc, who didn’t know Grace and doesn’t understand the complexity of her condition(s), did not think Grace needed to be admitted. She mentioned oral antibiotics at one point, but apparently changed her mind on that because we left with no prescriptions. She did an x-ray and blood work—both were normal, of course—and sent us on our merry way with instructions to follow up with Grace’s orthopedist the following day.

We had our ortho appointment on Monday, and Grace’s hand looked totally normal—no redness, no swelling, no heat. Argh!!! It’s like when you take your car to the mechanic and all of a sudden the funny noise is gone—very frustrating. The next day, Tuesday, Grace was very defiant on her way into school, and it occurred to me that perhaps her behavior was tied to something going on in her hand. I took off her glove, and sure enough, there was an even bigger and more pronounced red streak. I talked to her school nurse about the possible infection and asked her to check Gracie’s temp throughout the day. About an hour after I dropped her off, the school nurse called to tell me Grace’s temp was 99.7—much higher than her typical 97.3. And she wasn’t overheating—this high temp was due to something else.

When I got to the school, Grace’s cheeks were very flushed and she looked slightly lethargic for her. Her hand looked fine, though—no redness, no swelling. By the time we got home, there was no fever, either.

What is going on here?? How is it possible that a streaking infection can be there one moment and gone the next? Why did she have that mysterious fever? Should we be treating this as an infection or an injury? What the $#%^???

We have an appointment with Grace’s regular doctor this afternoon. Hopefully she’ll have some guidance for us—although it seems unlikely that she’ll have any more insight than anyone else. Perhaps she can refer us to a different infectious disease doctor, but that doctor will be at a disadvantage since he or she will never have experienced any of the weirdnesses of Grace’s non-existent inflammatory response. Either way, it will be nice to have another set of eyes on this mystery hand.

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Retinitis Pigmentosa

Retinitis Pigmentosa is a blanket term for a group of eye disorders that cause gradual, progressive vision loss. It usually starts in adolescence and affected individuals are legally blind by age 40. Generally, people with RP lose their night vision first, followed by peripheral vision, color sensitivity, and contrast sensitivity. Although most people with RP are eventually classified as legally blind, many do not lose all their vision.

As usual, Grace is different. When she was first diagnosed with RP at age 2, she was already legally blind. She had only approximately 10 percent of her vision remaining, all centrally. At last year’s eye exam, the opthamologist approximated that Grace had 5-10 percent of her vision left. Today, we had Grace’s yearly eye appointment, and the doctor confirmed that Grace has no peripheral vision. This wasn’t really surprising; we have noticed Gracie’s vision worsening.

The doctor jokingly referred to Gracie as “Professor” as she talked to her two students about Gracie. She quipped, “Early graduation for anyone who can figure out Gracie’s case,” as the students examined Grace’s severely damaged retinas. It was funny at the time, but there is a painful truth that whatever is going on with Gracie has never been seen before.

I just recently was virtually introduced to another mother of a toddler with RP. It was both sad and exciting to hear about another young child with RP—sad because of course we wouldn’t wish this on any family, but exciting because finally there is someone with the same disease as her. But, this other girl does not have the severity of symptoms that Grace has (thankfully!). She is not legally blind, and although it’s unusual for someone so young to be diagnosed with RP her case is not as rare as our Gracie’s. And, more importantly, this other girl feels pain. So, although we now have a new friend and new fodder for playdates, we are no closer to finding anyone else like Grace.

I don’t have a whole lot of hope that we’ll ever find an answer for what’s causing Gracie’s disease(s). And, realistically, it wouldn’t change anything, anyway—there is no way we would give Grace pain at this point because she would ache all over all the time, and perhaps technology will give her vision again when she’s older, but for now there is nothing for us to do but watch her world go dark. As depressing as it sounds, though, Gracie is a beautiful light in her own right and we have only to look at her to know she’ll be fine.

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Rant

No one thinks America’s health care system is perfect. People argue on every side of every issue about the flaws in the system. Personally, our family has benefited from the Affordable Care Act, and I am very grateful we have its protections. Without the ACA, Gracie’s insurance would have dropped her years ago and we would have been forced to add her to one of our employer-sponsored group plans for an outrageous expense (it’s $600-700 per month to add a child to either my plan or Chad’s).

Back in the day, before the ACA, we made a choice to enroll our children in their own health insurance plans. Each child has a child-only plan (through separate insurers) that is not tied to any other person. We have never had any problems with Jackson’s plan, but then again he’s a healthy kid so we’ve never really tested it. We haven’t had too many problems with Gracie’s, either, but we were paying huge dollar amounts out-of-pocket each year between her yearly deductible, hospital stay deductibles, prescription drug costs, etc. Last year, we finally got her enrolled in secondary Medicaid to defray our out-of-pocket expenses, and it’s been a lifesaver. We would have lost our house if not for the secondary insurance; we are not out of the financial woods but things are a lot less scary now.

Ever since we’ve added the secondary plan, Grace’s primary insurer has been refusing to pay for things left and right. We ordered a wheelchair for Grace because she tires very easily and long walks are too much for her. Anthem denied it. Medicaid paid the full cost. We ordered new gloves for her—Grace wears special gloves to protect her fingers from her teeth and from accidental injuries—and Anthem denied them. Medicaid paid the full cost. We ordered some fancy wound care dressings (Mepilex Lite) for Grace—these dressings have saved us from hospital trips, including the one that seemed imminent after Grace removed her fingernail last month. Anthem denied them.

I called the medical supply company and spoke to a rep, who told me that because Anthem would not pay the full cost of the dressings, they could not fulfill the order. I asked her how much Anthem would pay, and she said they would pay nothing. I asked her what the total cost was, and she said it was $800 for the box of four 8″x20″ sheets of Mepilex. WOW. Next, I emailed Grace’s nurse case manager at Anthem and explained the situation and asked for her help. I mentioned in my email that an $800 box of supplies could save Anthem from paying for a $30,000 hospital stay, so the seemingly high cost of the Mepilex is totally worth it.

The nurse case manager blew me off for a week. I kept bugging her, sending emails and reminders, and finally one day she called with a rep from the medical supply company conferenced in. Unfortunately, I didn’t hear my phone ring. The nurse case manager and med supply rep informed me that the company from which I was ordering the medical supplies doesn’t contract with Medicaid, so because they are contractually unable to bill me directly for the cost, they could not fulfill the order. The nurse case manager drove home the point that it was Medicaid, not Anthem, holding up the order. Infuriating—I’m actually very glad I didn’t hear the call.

In the meantime, Grace’s fingers healed to the point where she didn’t need the fancy wound care supplies. THAT is a miracle—her body is getting stronger, apparently, because that wouldn’t have happened a year ago.

I emailed Grace’s doctor to find out if she knew any other way for us to order Mepilex, or if she knew any companies that contract with both Anthem and Medicaid. I also looked online and found a box of four sheets of 8″x20″ Mepilex Lite for $129 from a different medical supply company. (Keep in mind the other company was charging $800 for the exact same thing.) Amazon carries it, too, but they charge slightly more—$133 for the box of four sheets.

So, my rant is this—the company that works with Anthem and Children’s Hospital charges over six times as much for the exact same thing as a company I found using a simple Google search. Why do they mark it up so much? Because they know the insurance company is only going to pay them a fraction of what they bill. Why would the insurance company agree to this? Because it drives up the cost of health care, thereby netting more income for the insurance company. ARGH!!! This is a serious problem. The Affordable Care Act did great things to help Gracie stay insured, but did nothing to touch the fraud and imbalance at the core of the system.

There is a happy ending to this story. After I ordered the Mepilex Lite at $129, I emailed Gracie’s doctor again, and she was upset that we had paid out of pocket, so she got her office manager to work on getting it covered for us. I am expecting a call from a different medical supply company that does contract with Medicaid, and if I can get the Mepilex covered by insurance, I can return the box we paid for out of pocket (hopefully—not sure if they’ll take it back but they should because it’s unopened). At least Gracie’s doctor is on our side. She works hard for us, in between working hard for all her other patients. Now if I could only get that nurse case manager to do something, too…

 

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Precious

Amazing Grace,
how sweet the sound
that saved a wretch like me!
I once was lost, but now I’m found.
Was blind, but now I see.

‘Twas Grace that taught my heart to fear,
And Grace my fear relieved.
How precious did that Grace appear
the hour I first believed.

Those words really speak to me, especially the second stanza. I never knew fear until Grace first had a life-threatening incident. But Grace, being so amazing, pulled through. Every time, she pulls through. She is amazing.

She managed to avoid antibiotics for this most recent finger infection. It never got to the point where she required a hospital stay; this is the first time she’s ever gotten that close and pulled back from the edge without medical intervention. We are not quite out of the woods yet; there is a purple area under her skin that could still necrotize and poison her bloodstream. But, it could also come up through the skin as a scab. Time will tell which way the wound will go. Right now, it looks pretty good, all things considered.

As for her vision, it is getting worse. The other day she couldn’t find her cup in a brightly lit room; it was right in front of her. I gave her verbal directions and eventually she found it through a very blind-seeming groping. It hurts my heart to watch her vision deteriorate; it won’t be long before it’s gone. But, medical science is advancing quickly in vision areas, and there’s a chance she could regain some or all of her eyesight through technology. Was blind, but now I see. I know that verse is metaphorical but it might become literal for her. I hope so.

What I do know is that Gracie is amazing. She continues to defy the odds, to learn the impossible, and to do it with grace and charisma. She is not limited by her disabilities and I should not be, either. How precious has my Grace appeared since the hour I first conceived.

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