After six years of blogging, I finally created an Amazing Gracie Facebook page. Better late than never, I suppose!
Please like and follow the Amazing Gracie page. Thanks!
After six years of blogging, I finally created an Amazing Gracie Facebook page. Better late than never, I suppose!
Please like and follow the Amazing Gracie page. Thanks!
As I write this, the world is reeling from the COVID-19 pandemic. We’re all in the throes of it, experiencing every emotion—often in the same day.
In Colorado, we have been on lockdown since mid-March. Since I am now a remote employee, day-to-day life did not change drastically for me (or Elliot, for that matter). For the big kids and Chad, though, their entire world has been turned upside down.
Chad has been immersing himself in planning the ultimate garden. The shortages in the grocery stores were eye-opening and he wants to be as self-sufficient as possible in the middle of a city. And his hard work is already apparent. The back of the back yard is a mulchy oasis of tiny greenery.
Jackson and Grace have been doing online school since March 17th or so. This means that their entire curricula is available online and they are expected to complete their work daily. In the beginning, Jackson was really good at online school. He quickly learned that he could get the whole day’s worth of work done in a very short time, leaving him with plenty of time for watching “The Simpsons” on Disney+ and playing Xbox.
Grace rebelled against online school from the start. She hated the idea that she was not able to physically go to school and therefore refused to do any work at home. It’s ironic, because almost every single day this year she’s come home from school moody, complaining about how she hates being around her classmates because they’re always so disruptive and the whole class gets in trouble for their shenanigans even though she’s generally a perfect angel at school. (Surprisingly, this is true. I have always heard from her teachers that she is very well-behaved at school. She must save up all her consternation for me.)
We’re only three weeks from the end of the school year now, and MY GOD, it will be a long claw to the finish line.
Grace’s teachers set up Zooms with her every day, so she at least does 30 minutes of school each day—face to face with a teacher. Jackson is supposed to check in throughout the day for his various classes, but he has not been doing this. Hopefully his grades will survive.
Having the whole family together is like a dream come true, and also a little bit of a sitcom (Think “Malcolm in the Middle,” not “The Brady Bunch”). I love having my kids around, but they are constantly hungry and the big two fight practically nonstop. The little guy sometimes gets lost in the noise and sometimes makes more noise than the older two combined. There’s nowhere for any of us to go to escape; most of the stores are closed and children are not supposed to go to any of the ones that are open. It’s the 24/7 Family Challenge!
The really interesting thing is that most other families are in exactly the same position as us. People all over the world are doing this crazy pandemic tango. In most or all families, people are taking turns having nervous breakdowns and sometimes complete throw-downs while others try to lift them up from the depths of their own black hole. How strange that a virus brought the entire world together in ways the internet and airplanes never could. And yet, we are all apart, separated by six feet of social distance space and wearing masks of varied origins.
No one knows how long this will last. Though we cannot stay shut up indoors indefinitely, some people are utterly terrified to rejoin society. Others are outraged at their loss of independence; we all grieve in different ways.
But while we’re all stuck together at home, I will try my best to cherish the togetherness. All the outbursts, the shouting, the kicking and hitting and biting, all the asking for snacks, all the tech support for Zooms and Google Meets, all of it. My family is my everything. For now, we are all together and safe. Isn’t that the most important thing?
It has been exactly two weeks since my last day of employment. Since then, I have done a lot of cleaning, spent time with all the kids, helped out at Chad’s office, and had some job interviews. I haven’t heard back whether I got the job I interviewed for yet, and I’m starting to think they selected a different applicant. Unfortunately, this was the only job possibility I had to continue in the same career that I’ve loved for so many years.
I was complacent at my old job. I enjoyed what I did and loved the people with whom I worked. It was interesting and rewarding, and I was well-liked. I received frequent praise for my work quality, creativity, flexibility, efficiency, etc. It was nice to be appreciated. Even the people who forced me to “resign” could not help but praise my work; they made a point of saying they weren’t forcing me out because of my work, but rather because they did not want me to work remotely. It’s been hard to lay that part of me to rest, to know that my career may essentially be over now.
But reality is cold, and I must face the hard fact that a new career path is on the horizon.
I could always work for Chad. I have resisted this for so long; it was never my choice to work for him. I have enjoyed helping him these past couple weeks, but don’t have a lot that I can do for him. I’m a writer and an editor, and he doesn’t really do any writing. It’s not a great fit.
And deep down, I really want to do something meaningful. I want to help people. I want to know that I’m not just working for the money—I’m working for the greater good. Naturally, as Gracie’s mom, I’m drawn to causes that support the disability community.
So I’ve been thinking lately of returning to school—for good. I am considering trying to become a special education teacher.
The very thought makes me nervous. I have no idea how to teach. But muddling through as a Girl Scout leader this year has enabled me to dip my toes in the education pool, so to speak, and it’s maybe less hard than I had anticipated. I’m still not sure I could handle a room of 30 children, but maybe I could take on a group of 10 kids with special needs, like Gracie.
Part of what’s keeping me from continuing in my previous career of being a legal editor is that there simply aren’t many jobs for legal editors, especially non-attorney legal editors. It would be nice to have skills that would transfer easily, so that if I ever lost a job again I would be able to find another one in the same field. And it would be really nice to be able to help people at the same time.
Maybe this is what the universe was trying to tell me. Maybe I had to leave my job so that I would be forced into a new career. Maybe this is exactly where I’m meant to be.
I’ve also considered a career in medicine, perhaps as a PA or maybe a nurse practitioner, but the hours turn me off. Plus, I’ve always thought it would be extremely difficult to see other chronically ill children and their families. I know too well what they’re going through, and would have a lot of trouble maintaining professional distance.
But education is exciting. Children learn and grow, if you’re good at teaching them. And you learn and grow simply by teaching. I could do good and have a job too. It doesn’t sound so bad.
Losing my job has been very, very hard. It’s been extremely stressful, and the uncertainty of the future is nerve-wracking. But maybe, just maybe, this door closed for a reason. Maybe I’m meant to go in a totally different path. And maybe that path is to become an educator.
The future is uncertain, but not unbearable.
When Jackson and Gracie were born, I had no trouble finding child care. For Jackson, we interviewed a few in-home daycares and picked the one we felt best about. We ended up switching to a different one after a few months, but it was easy to find an in-home daycare for him. With Grace, we already had a daycare because of Jackson.
When Elliot was born, I spent the first four months of his life with him – every minute of every day. I started to work remotely almost immediately after he was born and gradually increased my hours; by December, I was working almost full-time but completely remotely. But then, in December, I was asked to return to the office.
I spent many distraught days trying to wrap my head around the idea of leaving my perfect baby. The thought of having someone else care for him so I could go to the office broke my heart. Many nights, I awoke overnight and sobbed at the thought of not being able to spend every minute of every day with my adorable, happy, sweet little guy. It felt as wrong as anything has ever felt before.
Logically, I knew that daycare wasn’t the worst thing that could happen to a child, and so I started searching for childcares for my baby. It turns out that there is a huge daycare shortage in Colorado – very few childcare centers have openings at all, and many are on months- or years-long waiting lists. Elliot would have aged out of the infant room by the time many of these facilities had openings.
We did eventually find one in-home daycare with an opening. It wasn’t a great fit; it was close to the house and the provider seemed nice, but it was expensive and she did not allow discounts for part-time care. Still, on the set day, I took my baby to her house and went to work, missing him the entire time.
He missed me, too. He cried the whole time he was in her care, and wouldn’t take a bottle. He was Persephone in the depths of Hades, refusing to eat until reunited with his Demeter. Still, we tried again later that week. And again, he hated it. My happy little guy cried and cried.
The next day was a Saturday, and he woke up with a fever. Grace had awakened overnight with the fever shakes, but his came on slowly. By the following Tuesday, he was struggling to breathe, and the doctor confirmed he had RSV and bronchiolitis. She informed me that the only reason he was allowed to go home on oxygen instead of being hospitalized was that he was so happy. Ironic, isn’t it?
During the week that he was so sick, the new daycare called to tell me that she’d filled Elliot’s spot with someone else. She just couldn’t take care of a baby that cried all day and wouldn’t eat.
At that point, we were out of options for childcare. I didn’t even know who to call, because it was a lucky fluke that we’d even found the one place. For the first time in weeks, I felt a glimmer of hope that I’d get to be with my baby for a little longer, that my desperate pleas to the universe had been answered. It was a morbid hope; my income had been our only steady income for months, and without it, we might have nothing on which to live.
I knew I needed to find childcare so I could return to the office, even though my job is capable of being done entirely remotely. (And even though I had been DOING my job remotely for months.) It was a rock and a hard place – I needed to find childcare, which wasn’t available, but I also needed to be with my baby with the deepest yearning of my soul.
Sometimes the universe provides in unexpected ways.
It wasn’t too long before my employer grew tired of accommodating my childcare situation. In March, I was required to come in on the day of a blizzard so that I could have a meeting with the executive director, the assistant executive director, and my direct supervisor (who had only been there for a few days at that point). At that meeting, I was told I had eight weeks to find childcare or I would not have a job – I would be considered to have resigned, since I could not fulfill their requirement that I be in the office at least three 8-hour days per week. I asked for an accommodation – I asked to be a full-time remote employee, which I’d been doing already for months – but was denied. That just wouldn’t work, they said, blaming it on the new person (who looked mortified to be thrown under the bus in her second week there – privately, she told me that she is very accommodating, but this was not her decision).
I spent many, many days distraught after this meeting, and many, many nights not sleeping. I really like what I do, and I’m good at it. I didn’t want to give up my career, but I also could not, could NOT, bear the thought of being separated from my sweet baby. I felt resentful at being forced to choose between my job and my child, and hated the fact that anyone would try to poison my relationship with my baby by forcing me to choose something else over him. But every time I looked at his sweet face, I knew there was no choice. All I can do is smile when I see him. He brings so much warmth and joy to our entire family.
And, there was still the issue that I had no options for childcare. I had been able to scramble together care for the one day a week I had been going into the office, but it wasn’t a regular thing and I would not be able to rely on it forever. I certainly wouldn’t be able to extend it into three full days per week. And even if somehow, miraculously, I could have found care for Elliot, school is almost out for the summer and I have no one to care for Grace and Jackson. (It’s extraordinarily hard to find care for Grace, since she is a cognitively-intact kid who needs help in the bathroom.)
The rock and hard place got even rockier and harder. The sleepless nights and stressed out days continued, and many, many tears were shed.
But again, sometimes the universe provides in unexpected ways. Sometimes things that seem so terrible turn out to be not that bad, after all.
Through all these years at my job, I’ve made many, many connections. Through some of these connections, I learned of remote job opportunities I didn’t know existed. I also learned that some of these connections would hire me the moment they had the chance to. Some of them were eager for me to be on the job market so that they could scoop me up. Others were willing to write letters of recommendation for me, many of which brought tears to my eyes. I had no idea I’d had such an impact on the people I worked with. It seemed that everyone I asked was eager to help me, and the praises they uttered were humbling and beautiful. They all recognized my worth, even when I struggled to see it.
It is the end of the eight-week ultimatum period, and soon I will no longer be employed. The future is uncertain and scary. But through this time, I’ve learned what is truly important to me. There is nothing in my life that means more to me than my children. There is no job that is worth sacrificing my children, no matter how great the paycheck or health insurance. I don’t know what we’ll do long-term. I don’t know how we’ll pay our bills, whether we’ll have health insurance, what’s going to happen. But I do know that I belong here, with my children. I will never look back and regret choosing them over a job. They are more precious than anything else.
Sometimes, the universe provides in unexpected ways. I am trying to be hopeful that everything will work out, and the universe will provide a way for me to be with my children while still having a job. Because sometimes, things that seem the darkest are really just a prelude to the brightest light.
Elliot is 8 months old today! He is the best baby ever. I truly have never met a baby as calm and easy-going as he. His smile is always at the ready, and he is friendly to pretty much everyone he meets. He rarely fusses or cries – mostly only at the end of the day when he’s ready to go to bed, which, hey, we all get fussy when we’re ready for bed. In fact, he got his first tooth yesterday, and the only sign of teething he showed was a reluctance to eat.
Elliot has brought so much joy to our family. The kids adore him, and he adores them, too. Jackson is Elliot’s special big brother – they are more than friends; their connection is undeniable. Elliot loves Gracie, too – he lights up when he sees her, then reaches for her long blonde hair. He kicks and squeals when he sees Daddy, which does Chad’s heart good. And of course he loves me. The Milk Lady is pretty important to him. The feeling is obviously mutual.
For years, I wanted another baby. I didn’t want to just be done after Grace; I had always wanted four kids and it was hard for me to settle for two. But raising Grace is hard. The toddler years were darned near impossible with her, what with all the hospital stays and new diagnoses. Everything worked out perfectly, though – Elliot came along at exactly the right time (right after I started to accept that two is a good number of kids, haha).
I never anticipated that my career would end if I had another child. I did not foresee a legal education company engaging in such blatantly discriminatory behavior. But so be it. If I am being forced to choose between my job and my child, there is no choice at all. No one ever said on their deathbed, “Gee, I wish I had worked more!” And I know with all my heart that being with the children is the one thing that will make me happiest. Even though the future is uncertain and money will undoubtedly be tight, I cannot bargain my children away for anything. They are my life, my lights, my soul, my raison d’etre.
Seventeen months ago, I had no idea about the incredible changes our family was about to undergo. But here we are, and it’s the best thing ever to have Elliot in our lives. I love my little man so much. He has enriched our lives beyond belief. Thank goodness for him.
Just when it feels like things couldn’t possibly get worse, Grace gets gangrene.
I found it last night – the tell-tale purple finger. She has been “off” for a few days, but I couldn’t figure out what was wrong. A knee was hot but it didn’t really look like her typical knee infection. She’s been complaining when I take her temp in her ear, so maybe it could have been an ear infection, but without a fever there’s not much to do for it. But last night, when we got home from dance, she had a bloody bandage.
It happened fairly quickly, as her infections are wont to do. I saw the finger the previous night and it was relatively fine – no cause for concern, at any rate. But last night, it turned a corner, decidedly for the worse. After packing a quick bag or three and saying our goodbyes, Grace and Elliot and I left for a days-long hospital stay.
When we got here, all the pediatric rooms were full – there was not a bed for Gracie upstairs – so we were told we would have to spend the night in the ER. This isn’t much of a problem, except that there is nowhere for me and Elliot to sleep in an ER room. The nurses found a bigger room, though, and wheeled in a recliner so that I could have somewhere to rest.
But rest is elusive when your daughter is in the hospital, and you’re worried about exposing your infant son to ER germs, and – oh yeah – you’re about to lose your job and health insurance because you dared to have a baby.
So here I sit, in the ER recliner with Elliot on my breast, drinking weak hospital coffee and working. Or blogging at the minute, but I will be back to work soon enough.
If only the people who are so eager to push me out of my job knew what I do for them.
Oh, you know when the world ends
I’m going to take you aside and say
Let’s watch it fade away, fade away
And the world’s done
Ours just begun
Ours just begun
I never thought that I would have to trade away everything I had for one more baby. I failed to foresee that having another child would cost me so much. I did not realize the price of my dreams.
But oh, how wonderful he is.
If I had known going in that having a baby would mean I would lose my job, we would become so buried in debt that we struggle to pay our bills, Chad’s business would implode, and incidental expenses would become impossible, I might not have had him.
And oh, how wonderful he is.
With each appliance that breaks down, each flat tire, each leaky faucet, each school bus fee we can’t pay, each time we have to say no to Taco Bell because we can’t afford it, we get nearer and nearer to the point of no return. The world as we know it is coming to an end. It is terrifying and so, so stressful.
And then I look into those big beautiful blue eyes, and feel his fuzzy blonde hair against my cheek, and listen to his adorable coos and shrieks and giggles, and feel the warmth from his amazing toothless smile, and I know I would never choose anything but him.
Oh, how wonderful he is.
The world is over, but it’s just begun.
When Gracie was little, we couldn’t imagine how she would manage school without someone right by her side helping her get through the days. We ended up accepting a placement for her at the preschool in our district with the most support—a 4-1 adult to child ratio. The preschool is the only inclusive part of a non-inclusive school in the district, a K-12 school for children with disabilities requiring intensive support. The preschool offers class sizes of 20 children, 10 of whom are on IEPs and 10 of whom are “typical” kids.
Her preschool was fabulous, and the staff quickly recognized how special Gracie is. They loved her for being unique, spunky, adaptable, and brilliant. And they also set her up for success at our neighborhood school by working to give her all the supports she needed, including a list of accommodations a mile long and a one-on-one helper or ISP. When the head preschool teacher was advocating for Grace to get an ISP, she warned us that the district does not like to provide ISPs for children because they do not want to take away from the child’s independence by having a support person right there. The district does not want to teach the child helplessness. The preschool teacher assured us that in Grace’s case the ISP would be necessary for safety reasons, and quelled our fears about possibly sending our amazing child to a big unfamiliar school without the necessary supports to get her through the day.
Gracie’s first ISP was absolutely amazing. Miss K. was Gracie’s helper throughout kindergarten and first grade, and will be a lifelong family friend. However, she moved out of state, and last year we had to deal with a new helper. Gracie’s 2nd Grade helper had a strong personality and was not a good fit for our family. We worked with the school to find a new helper for this year, and now Grace has Miss T.
Grace is in 3rd Grade now, and she’s becoming much more independent. When she started kindergarten, she used her walker most of the time, she needed help on the playground, she frequently tripped over other kids, and we did not know how much help she would need with academic work. By 1st Grade, her ISP was not allowed to help her academically because Gracie was at grade level with everything except reading. That has been a part of her IEP every year since—Grace does not require academic support and her ISP is only allowed to help her with things that she can’t see clearly.
Grace’s home physical therapist has also been working with Grace at our local playground, and she no longer needs support or assistance to use any of the playground apparatus. She can even do the monkey bars, much to my dismay (I have visions of her falling and breaking bones). She does not need help at school at recess. And today, for the first time, I sent her to school without her walker. She doesn’t really need it for walking anymore; she only uses it at school because the school is huge and she tends to turn her ankles when she gets tired. But she’s older now, and stronger, and she doesn’t really need the walker. Grace and I agreed to only send it on gym days.
Grace doesn’t really need an ISP anymore. And now, the words of her preschool teacher ring true—Grace is learning helplessness because there is always someone there to help her, even when she doesn’t really need it. This weekend, she threw two epic tantrums because I wouldn’t help her. She wanted to go outside and I didn’t really want her to—it was cold and she has a lot of wounds on her fingers that I didn’t want to get dirty—so I refused to help her put her socks and shoes on. After several minutes of screaming and crying, she eventually tried to do it herself and immediately succeeded. She got to go outside anyway; I wasn’t going to take that from her after she worked so hard for it. Later, it was time to do homework. She had some multiplication puzzles to work out. I re-wrote the numbers that were hard to see in Sharpie and explained how the puzzles worked (which she probably already knew, since she had them on her homework last week too). She would not complete the puzzles. “But MOOOMMMM! I need help! I need you to tell me what to multiply and where the answer goes.” Again, I refused to help her—this time, only because I knew she could do it—and again, she was able to do it herself as soon as she stopped tantruming.
We also have been having trouble getting Grace to stop biting her fingers. I believe this is related to the learned helplessness. Because someone else is always there to be responsible for Grace’s fingers, she has stopped trying to care for her own body. She has no incentive to be responsible for herself. I believe that if we take away some of the help she’s getting in other areas, we may encourage Grace to become responsible for herself—after all, it feels good to accomplish things, and the more hard-earned they are, the more the sense of accomplishment. I do believe she is old enough and smart enough to stop biting her fingers, no matter how ingrained the habit is.
When Grace was a baby, we used to put her in elbow restraints called “no-nos” to keep her from biting her fingers. She could not get her fingers to her mouth, so she could not bite them. However, she also couldn’t get her pacifier to her mouth with the no-nos on. But that didn’t stop her. She would take her pacifier, put it directly in front of her on the floor, then move her arms straight out to the sides and bend at the waist, grabbing the pacifier with her mouth. She used to be the queen of adaptability.
We will get there again. In the words of Spiderman’s uncle, with great independence comes great adaptability. Or something like that.
Last night was Halloween—I hope all of you had fun and enjoyed the festivities. I know that my kids sure did! It was Elliot’s first Halloween, and he was tuckered out by all of the being carried around and making people smile.
Gracie had a good Halloween. She got TONS of candy; she will probably still have some until this time next year. She doesn’t really care for sweets too much—she likes them, but doesn’t go crazy on them.
Jackson also had fun. This was his first year trick-or-treating without us; he met up with one of his school friends and was on his own. Gasp! My little boy is not so little anymore. He also got TONS of candy, which will likely be gone by the end of the week. He loves all junk food, especially candy.
On the day before Halloween, we visited the local high school for their annual Trick-or-Treat Street, where groups of high schoolers decorate and staff candy tables for the area children. We’ve been to this event for the past few years. They always do a good job. This year, it was packed—there were two or three times more kids than there have been in the past. We waited in line for about 30 minutes before we could even enter the trick-or-treat area. Grace played with a cute little girl in line ahead of us while we waited.
Finally, we reached the start of the trick-or-treat maze. We walked through a set of double doors into a dimly lit hallway. There was a hopscotch game set up inside the doors, and the kids were supposed to jump through it to get the candy. But for Grace, the dim lighting took away her remaining vision, and she could not see anything at all. I explained to the girls at the table that she couldn’t see it, and they gave her a handful of candy. Grace insisted that she was fine and could walk without assistance, but she kept falling, landing hard on her knees. Each time, she’d get up with her usual chirp of “I’m fine!,” but eventually she allowed me to lead her. I held her under her arm throughout the rest of the building, leading her through hallways and corridors as she collected treats. Except for a scary moment on some stairs, and a difficult walk across a balance beam, Grace did really well in the low lighting. She ended up with about half of a pumpkin bucket’s worth of candy—not a bad haul for the day before Halloween! It was a fun family experience, despite the reminder of Grace’s visual limitations.
Grace’s visual impairments are easy to forget during our regular day-to-day lives; she does so well with them that you almost can’t tell she’s legally blind. But when the lights go down, so does her vision. All she can see in dim lighting is the lights themselves—and these appear very bright to her, so they don’t help illuminate the rest of the scenery.
Last night, I took the kids trick-or-treating while Chad stayed home and handed out candy. Gracie was in her stroller; between the vision impairments and her balance problems, it seemed like the best way to get her around. We would leave the stroller at the sidewalk while we went up to houses for candy.
Again, Gracie’s low vision was apparent. There were many times that she could not find her stroller at all, even when it was directly in front of her. I took to shining the flashlight on her stroller, but even then she couldn’t see it unless she was already looking at it. She is truly blind in the dark.
There was one time last night where I was trying to steer Grace away from some rose bushes. She cheerfully remarked that they were very pretty with the pumpkins on them—but the pumpkins she’d seen were not on the roses at all. They were solar powered pumpkin lights in little flower pots along the path. I shined the flashlight on the roses, but she still did not see them. It doesn’t seem to bother her—after all, she’s lived like this her entire life—but it is heartbreaking to me and Chad. It’s like a smack in the face to really be confronted with her limitations like this.
All in all, though, it was a very good night. She filled her pumpkin bucket (we had already removed the candy from the night before), and we came home when it became too heavy for her to continue to carry (even in the stroller). She had a blast both nights, and never was bothered by her own limitations.
One of the things that makes Grace so amazing is her attitude. She never lets anything get her down. She is the queen of adaptability—if something is in her way, she cheerfully changes course and moves on. While it was sad for me and Chad to again be confronted by the reality of her poor vision, she was not sad at all. To Grace, it was just a fun experience with family and costumes and candy.
And once again, I am reminded not of Gracie’s limitations, but of her amazingness. The world would be a better place if we were all so cheerful and unflappable as little miss Amazing Gracie.
When Grace was little, we used to wonder what she could and could not feel. Doctors would ask me about her sensation and I would give my best guess, but sometimes I simply could not answer. We would discuss how she’d be able to tell us when she was older.
Grace is older now—she’s 8 years old. And lately, she and I have had some fascinating talks about what she can and cannot feel.
It all started one night when I was putting her to bed. I was patting her gently on the arm in a motherly fashion. She moved, and I asked her if she could feel me patting her. She said no, but she could feel the warm spot where my hand was. That made sense—we have known for a while that she can feel hot and cold. But she verified that she cannot feel light touch, which is really too bad, because so much of parenting is showing affection through gentle touches.
A few days or weeks later, again at bedtime, we were talking about what pain Grace can and cannot feel. She encouraged me to ask her anything—she wanted to talk about it. “Is there anything you want to know, Mom?” she sweetly asked. And of course, there were many things I wanted to know.
When Gracie broke her wrist a couple years ago, she said that it hurt. During our conversation, I asked her, “What did it feel like when you broke your wrist?” She replied that it felt like needles, while pointing to the exact spots on her arm where the fractures were. “But you can’t feel needles—you never react when the IVs go in,” I remarked. She said that no, she can’t feel the pokes, but she can feel the IVs when they are in her arm. “And they HURT, Mom!” she averred. This is fascinating, because she never acts like they hurt. She typically accidentally removes several IVs per hospital stay just by getting them caught on things and pulling away. I know that when I had an IV during Elliot’s birth, I was extremely conscious of how I was moving so as to not accidentally bend or pull the IV. Even during the most intense contractions, I would try not to bend my wrist because the IV would hurt. It’s hard to imagine that IVs hurt her in the way they hurt me, simply because of how she reacts to them.
She also said that she feels random needles in her feet (her feet have traditionally had the least sensation of any part of her body). I told her that this was fascinating, because it sounded like a typical peripheral neuropathy—her nerves were misfiring, as is common with people with peripheral neuropathies. Now it was her turn to be fascinated—she was shocked that it was normal for her to feel these random pains. I explained that many times, people who have no trouble feeling things throughout their lives develop peripheral neuropathies as they get older. These people report feeling pins and needles in their extremities, particularly their legs and feet, so what Grace was feeling was actually normal for someone with a peripheral neuropathy. She was fascinated and intrigued. I think she is as curious about what “normal” people feel as I am about what she feels.
For the past several months, Grace has been biting her fingers mercilessly. She averages 7-8 bandaged fingers per day, and I only bandage the ones with open wounds now because she has to be able to use some of her fingers for touch screens and iPads at school. During our conversation, I asked her what she feels when she bites her fingers. Grace said that she can’t feel it at all. In fact, she often does not know she’s doing it. She said that’s why she sometimes says that she didn’t bite her fingers, even when it’s obvious that she did (like when she has blood on her mouth and face)—she did not know she was doing it, so she feels like she’s being honest by saying she didn’t do it. Although this is fascinating, it is also frustrating. How do we get this kid to stop doing something she doesn’t know she’s doing? How do you break a habit so ingrained it is no longer noticeable? How can she protect a body part that doesn’t even exist to her brain? How can we, as parents, help her through this? (If anyone reading this has suggestions, please share! We are desperate to help her.)
We have had a few other conversations about sensation since those nights. Grace is eager to describe her experience, and asks me often if I want to talk about pain. During one of our conversations, I told her that when most people get diarrhea, it’s very painful. It makes our stomachs cramp and can be excruciating. She said that she gets a stomachache when she has diarrhea also, but from what she described, I don’t think she feels it as much as is typical. I know from watching her through the years that she does not seem to feel the painful cramping, which is frankly a blessing because she is plagued by chronic gastrointestinal distress.
I also asked her about a time when she was 3 and she pulled out her teeth. She said it hurt, but her memory of this event is clearly fuzzy because she got several of the details wrong. She did remember thinking that she wanted Tooth Fairy money, and feeling disappointed when the Tooth Fairy refused to pay for teeth that were prematurely extracted. (Hey, the Tooth Fairy’s gotta protect her somehow! If that’s what it takes to keep her teeth intact, it’s worth it.)
As she gets older, I anticipate having several more conversations with Grace about her sensation and pain perception. It is intriguing to me, and cathartic to her, to have these discussions. Hopefully, by talking more about what she can feel, we can help increase her awareness of her own body. And maybe, just maybe, someday she will quit biting her fingers. One can only hope.