Suffering

Yesterday, we celebrated Memorial Day at my aunt’s house. The grown-ups chatted on the patio while the kids (Gracie and Jackson and two girl cousins) played outside. The girls had their shoes off when we got there, and Jackson quickly ditched his flip-flops. Before I knew it, Gracie had taken off her shoes and socks too and was walking through the grass barefoot. Because you have to let kids be kids sometimes, and because my aunt and uncle have a beautiful manicured lawn, I let her go without the shoes.

When the kids came in for lunch, I sat down with Gracie and helped her eat. It was then that I noticed all the cuts and scratches on her legs and feet. She was wearing capri pants, not long pants, and the exposed part of her legs was scratched on both legs. She, of course, did not know there was anything wrong. Sigh…

I washed off the scrapes and put long pants on Grace, and admonished her not to go outside again without shoes and socks and gloves. She complied, happy to be able to play with her cousins and happy to be outside.

Gracie took her gloves off when we got home — this is a common practice, since she’s fairly unlikely to get cuts and scratches on her hands at our house. Some time after we got home but before bed, I noticed blood on a finger. She had torn off a fingernail. To be fair, the nail was half dead anyway because of a prior mysterious injury, and I’m sure the dead part caught somewhere and just ripped right off. This was not a self-inflicted injury; Grace had no idea it had even happened.

My husband was horrified at the loss of the fingernail. He was shaken up at the second reminder in one day of Gracie’s disability. Losing a fingernail should be very painful, but Gracie didn’t even know it had happened. After he had made comments to that effect, I realized Gracie was listening, and tried to talk to her about it.

I told Gracie that we were sad because she didn’t feel when she hurt herself. I told her we felt sad because we didn’t want her to suffer. Her next words stopped me in my tracks — Gracie interrupted me and said, “Am I suffering?” I asked her if she was and she said no.

Truly, she isn’t suffering. She isn’t feeling the tremendous pain she should be feeling from tearing off a fingernail. She isn’t wishing she had a different life, or wishing her body worked normally, or missing the vision she’s never had, or any of that stuff. She is a happy, smart, sweet, sociable, loving kid. She’s not suffering.

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Dichotomy

We have been CRAZY busy around here. It’s the end of the school year, the end of Gracie’s year in the public preschool at the non-inclusive school, and we are busy trying to prepare everything for her to start kindergarten in the fall. I think it’s going to be good—her teachers have been so thorough and the accommodations section of her IEP is a mile long. They even thought of things like allowing her to have a chair during circle time so she’s not concentrating on sitting there and can pay attention to what the teacher is saying. It’s awesome.

We also had a transition meeting at Gracie’s new school last Monday. Even though our neighborhood school has fairly abysmal test scores and it’s far from Ivy League Prep, I feel like she’s going to do well there next year. Everyone is prepared for her—well, as prepared as they can be.

Another thing that’s been occupying our time has been the search for a new daycare. Our long-time daycare person can’t do it anymore; she is having some serious life crises and daycare is about the last thing she needs to worry about. I’ve made dozens of phone calls, trying to find a daycare that takes special needs kids and also will take a school-aged typical kid. It has been a process. Many people never returned my call. Some spoke to me, only to end the call when I asked if they took special needs kids. We finally found two candidates, but one of them wouldn’t take Jackson. We met her anyway, liked her, spoke to her for an hour, and then found out she won’t take Grace either because Grace doesn’t nap (she only wants little kids apparently). However, the second one might just work out. We’re set to start Gracie there on June 1. Thank goodness.

Throughout this whole process of preparing a school for Gracie and trying to find a daycare, it’s become painfully clear to me that the Gracie on paper is a very different child than the Gracie in real life. On paper, Gracie looks and sounds very scary. She has two major disabilities that affect many aspects of day-to-day life. She requires pages of accommodations just to get through kindergarten. She overheats, she wears gloves, she is blind, she needs help going potty, etc. etc. etc. I can imagine being intimidated too after hearing all the particulars.

The Gracie I know, though, isn’t scary. She is a really sweet girl who genuinely loves others and wants to make everyone laugh. She loves dolls. She loves horses. She loves to be pretty and wear nice clothes. She makes up funny stories and makes us laugh. She is incredibly bright and picks up on EVERYTHING. She also repeats everything, which can be awkward for us at times. But in so many ways, she’s just like so many other 4-year-old girls.

Once Gracie starts school and they get to know her, she’ll be fine. The teacher and her one-on-one will learn to recognize the signs that she’s overheating and get her cooling vest on her before anything bad happens. They will learn that she is eager to please and will try hard, but when things get tough she’s the master of avoidance. They will figure out that she’s sweet and fun and wants to be friends with everyone. They may even discover that she has this thing about calling one of the boys in her class “her boyfriend.” But most of all, they’ll figure out that she’s just a typical kid in so many ways. I’m excited for them to get to know her, and for her to get to show the world how amazing she is.

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Spectacle

We are quite the sight to see when we go out in public. Usually, it’s just me and the kids—one harried mother pleading with her kids in a sing-song mom voice, a little boy who is sometimes helpful and sometimes hiding somewhere so he can jump out and scare his sister, and a beautiful little girl with a walker. Apparently, not a lot of people have ever seen a pediatric walker. (I hadn’t, before Gracie.) We get a lot of stares. A LOT. Many people smile at Gracie—walker or not, she’s adorable. Others just stare.

This weekend, we went to the mall. We went to Target, which was not so bad, then we spent some time in the Lego store, which has beautiful wide open spaces and tons of room to maneuver a walker. There were a few people staring, but they were mostly kids. There was even a woman in a wheelchair in the store, so Gracie wasn’t the only person there using an assistive device. No big deal at the Lego store. But then, we went next door to the Carters outlet, and that was a whole different story.

I think it’s especially hard for parents of babies to see a disabled child. After all, every parent wants the world for their child. They don’t want to think that their kid could be—well, less than perfect, or not healthy, or whatever. Anyway, the Carters store was very different than the Lego store. Parents stared, horrified, as Gracie maneuvered her walker through the tight aisles. Gracie, mostly oblivious to the size of her walker and also lacking peripheral vision, frequently runs it into things and people. At the Carters store, she ran into the back of a lady’s shoe in one of the narrow aisles, but instead of being sympathetic or just simply moving out of the way, this lady was clearly irritated. (I get it, I do—no one wants to be pushed around.) Then, as we waited in line for what seemed an eternity, the folks ahead of us turned around and stared. Not kindly, smiling looks, but empty, unsympathetic stares. Perhaps they were bored and just wanted to watch the spectacle.

We are somewhat sheltered in our current situation. Gracie goes to a non-inclusive school and she is a rock star. Everyone loves that mischievous blonde-haired beauty. No one bats an eye at her walker or special gloves or lack of body awareness. She’s doing a lot better than many of her schoolmates and that is all they see. But out in the real world, people aren’t used to disabled kids. People aren’t used to seeing beautiful little girls with walkers and glasses and gloves. People don’t want to see beautiful little girls with walkers and glasses and gloves. It is an uncomfortable reality that most people would like to avoid. But for us, it is our reality and we can’t avoid it.

The kids and I will continue running errands together and making a spectacle while we do. We will continue to face those stares—some kind, some not—as we maneuver through tight aisles and as I try to corral my sometimes wild children. No matter how uncomfortable it can be, we will not avoid anything, because this spectacle is our reality.

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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 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, and I don’t want to quit because I like my job.

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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