Perseverence

Right before Thanksgiving, Gracie was lamenting that she’d never seen a movie in the movie theater. I had never taken her because it’s dark and loud and requires sitting still for two hours—any one of those things is usually too much for Gracie. She begged and pleaded, promising she wouldn’t be scared and would be able to sit there for the whole two hours.

I of course relented, being the permissive parent that I am. Gracie decided she wanted to see “Trolls.” She had been watching a music video on YouTube of one of the songs, “Get Back Up Again,” and knew most of the words by heart. So, on the Friday after Thanksgiving, Grace and Jackson and I trekked to our local movie theater to see this movie Gracie had been watching about on YouTube Kids.

It turned out to be a great movie—very cute and with a great message. Princess Poppy troll   embarks on a journey with survivalist troll Branch to save their friends from being eaten by the bergens, a miserable group of beings whose only taste of happiness comes from ingesting the vibrant trolls. It’s a kids’ movie, so of course it has a happy ending. It also has a lot of great music, from Simon & Garfunkel’s “Sound of Silence” to Justin Timberlake’s upbeat “Can’t Stop the Feeling” to Earth Wind & Fire’s “September.” But a highlight of the movie is the catchy tune that Gracie already knew, “Get Back Up Again.”

Gracie sang that song around our house for days before and after the movie. She would belt it in her best breath-support voice, doing arm movements for certain parts and grooving through others. I thought she only liked it because it was a fun and theatrical song to sing. I was wrong.

A few days after the movie, Gracie was wandering around the house singing her favorite song when suddenly she stopped. “Daddy, do you know why I love that song?” she asked Chad. “Because it has a really good message. It’s all about not giving up.”

Wow.

We were in awe. Once again, Gracie amazed us. She understood the deeper message of the upbeat tune. Our impish little child with the angelic blonde curls and the missing teeth once again taught us a lesson about strength in the face of adversity. The child who I was worried would be afraid in the dark theater was simply awaiting her opportunity to hear HER song, the song that could have been written about her life. (We coached her ahead of time about being quiet in the theater; she still sang along with the song, just not at the top of her lungs like she does around the house.)

Gracie is the queen of not giving up. She doesn’t think twice about it—if she wants something, she gets it. Self-sufficiency is second nature to her. This is the kid who shouldn’t be able to walk, but figured it out anyway. The kid who got her own pacifier even without the use of her hands. The kid who, when she broke her right hand this summer and lost the use of her fingers while they were casted, learned how to write with her left hand. The kid who falls and falls and falls and falls and falls, but never cries—she just gets back up again.

We could all learn a lesson from Gracie. Except, that kind of strength through adversity cannot be taught. It can be learned, but it comes from within. Gracie is just a little kid, but she already knows what it takes a lifetime for some of us to learn. She has always known. She is grace personified, amazing grace.

And when they knock, knock her over, she will get back up agaaaiin.

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Hot Lunch

Before the school year started, I purchased 10 hot lunches for each of the kids. For whatever reason, though, they didn’t use any of them until this month. One day when I was feeling particularly tired (and it wasn’t election day, although that was a TERRIBLE day), I convinced the kids to try hot lunch the next day. They were having cheeseburgers with fries so it wasn’t a hard sell. Gracie could even eat it, just without the bun.

The kids LOVED their hot lunch. They came home that night asking to have hot lunch again the next day. But I looked at the menu — teriyaki chicken and noodles — and once they heard what was being offered they changed their minds. However, they kept asking, and later that week Jackson had spaghetti and meatballs for hot lunch.

Spaghetti is one of Gracie’s favorite foods. Since she’s been on the gluten free diet, I have been making it with spaghetti squash or gluten free noodles, and she’s loved it every time. So, when she found out she couldn’t have spaghetti and meatballs at school because they would be regular glutinous noodles, she was crushed. She cried and cried, big alligator tears and wrenching sobs. I think it was the first time she’s felt cheated by the GF diet.

We talked about it, and I told Gracie that if she wanted to stop the GF diet, I could call the doctor and try to have an appointment with him. She agreed and told me to call the doctor so she could get off the diet.

I couldn’t bring myself to make that call.

It bothers me to prostrate myself before a doctor who won’t listen to me and doesn’t have the basic decency to return a phone call or email. Customer service is everyone’s job, no matter what kind of advanced degree they may carry. Lawyers know that not returning phone calls is likely to get a grievance filed against them; why don’t doctors have the same problem? There is no excuse for failing to alleviate the client’s concerns (or the patient’s, in this case).

I also thought back on all the other appointments with this doctor. At one of our first appointments, I told him that we gave Gracie digestive enzymes and that it was the most helpful thing we’d ever done for her GI issues. He told us to stop giving them to her. The digestive enzymes have helped her digest food better. Before we started giving them to her, we would see whole pieces of food in her diaper, and not just corn and peanuts. We could identify whole pieces of oranges, strawberries, carrots, broccoli, etc. Those foods should have digested, but didn’t. I worried about whether she was getting any nutrients at all from her food, whether her body was able to extract anything before expelling the food.

At our appointment with the awful dietician that the GI doc sent us to, she told us to stop giving Gracie her vitamins and Vitamin C supplement. Before we started giving Gracie her current vitamin regime, she would get every cold that came her way and had pneumonia multiple times each winter. When we started this regime (she gets half the dose of an adult multivitamin gummy and one Vitamin C gummy per day), she stopped getting sick. Now, she gets about one cold a winter and it doesn’t progress into pneumonia. She hasn’t had pneumonia since she was 3. She had it five times before that, multiple times per winter. That says a lot to me.

It seems backward to me that a doctor would tell us to stop the things that help our child but won’t give us the go-ahead to stop something that doesn’t help. Gracie’s blood test was negative for celiac disease, and she hasn’t responded to the diet at all, so it seems unlikely that she actually does have celiac. Also, Gracie’s diagnosed disease is known to cause gastrointestinal dysmotility — which exactly explains her symptoms; things either move through her too quickly or don’t move at all. That’s how it’s been her whole life. It explains why she’s not digesting her food, too — she moves it too quickly through her body and is unable to extract the nutrients.

The other thing that is stopping me from calling this doc is that he has not helped us at all. He has done nothing but make our lives more difficult. He has wanted to perform multiple invasive procedures under anesthesia without addressing my well-founded concerns. It’s hard for me to justify visiting a doctor who isn’t helping. If he could add something to our lives other than hardship, it would be easier to swallow.

Gracie really wanted me to make that appointment, and she kept bugging me about it. (She is a great reminder-er; she will let us know absolutely everything we might forget, multiple times, even before we’ve had a chance to forget it.) I finally told Grace that I didn’t want to go back to that doctor. I told her that any doctor who wants us to stop things that help and won’t let us stop things that don’t help isn’t really listening to us and doesn’t respect us. I told her that if we ever needed a GI specialist again, we would look for one who has seen other people who don’t feel pain, but we wouldn’t go back to this guy. She liked not having to go back to the doctor who wanted to scope her repeatedly, but still wanted to stop the GF diet.

After weighing all the pros and cons, we decided to let her try gluten again. She started with pizza (maybe not the best transition food) and loved it. She has had gluten in her food every day since then and has been fine. There has been no change in her bowel movements. This confirms to me that she does not have celiac; I would expect to see severe gastrointestinal repercussions from the gluten if she did indeed have celiac disease.  That’s what I’ve always heard happens with people who do have celiac.

Ironically, she has not had hot lunch since going off the GF diet. She has not thought the menu items sounded appetizing — even the “gooey grilled cheese” didn’t sound good (she thought “gooey” meant “soggy,” apparently, but even after I explained the difference she was unwilling to try it). I can’t really blame her. My own memories of hot lunch include a lot of greasy napkins from sopping off the food. But now, Gracie is free to have hot lunch whenever she wants. She doesn’t have to worry about the gluten.

Thank goodness. We all have enough to worry about.

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Thank you

Hello, dear readers. When I last posted, we were in the throes of a seemingly insurmountable problem – little lemon grenades were coming at us from every direction. I am pleased to report that all the good energy worked. We immediately felt the shift and were able to resolve the situation amicably. Thank you all for keeping us in your hearts. We greatly appreciate it.

And now, for something completely different.

For my day job, I read a lot of blogs, looking for content or news I can report on my company’s blog. This past week, I read an interesting post about the difference between discipline and motivation. The author made the point that motivation is often situational, and that to continue doing challenging work one must cultivate self-discipline. The author quoted Newton’s first law of physics: an object in motion tends to stay in motion and an object at rest tends to stay at rest. The analogy is that a disciplined person is like an object in motion, while a person who relies on motivation is essentially an object at rest, waiting for an external factor to prompt his or her movement.

Because I am inherently insecure, I immediately thought of this blog. Lately, I have not been disciplined about posting here. Usually, I try to post about once a week. I like to post when I’m motivated because those posts tend to be better written and flow more easily. However, motivation waxes and wanes. Thus, posts on this blog can be inconsistent. When we are in the throes of intense personal struggle, it’s hard to discipline myself to do anything extra, including posting here. (The exception is when the intense personal struggle is related to Gracie’s medical condition.)

Excuses, excuses, excuses.

I am torn between wanting to commit to writing more on this blog and accepting the reality of my schedule. I wish I could be disciplined enough to commit to a post a week, maybe more. But between working full time at my day job, taking care of the household and children, and now working a second job of sorts as well, there is not much of me left. It’s unrealistic for me to add anything to my life right now (except maybe a fluffy puppy if one happens to cross my path… kidding, mostly).

So, if you will all bear with me, I will commit to posting when the muse strikes, or when Gracie is having yet another medical crisis, and occasionally in between too. It may be a while; the muse is fickle. And I certainly hope it’s a while before Gracie has yet another medical crisis, although that may be sooner than we would like. Gracie’s occupational therapist was here today, working with Grace to get strength back in her right hand, and I noticed Grace’s hand is unusually swollen. Grace also mentioned a few times that her hand “tickles” – this is a word that other children who don’t feel pain use as well; it tends to signify injury. However, Gracie’s ortho does not want to subject her to any non-infection-related x-rays, and she is already in a hard cast-like splint, so there seems little utility in trekking her to the doctor at this point. We shall wait and see.

Thank you all for your support, for the good energy, and for being there for us—both virtually and in real life. We know we have a lot of good friends and family who love us dearly, and that means the world to us. In fact, love is the only thing that matters. Thank you all for spreading the love our way. Right back atcha.❤

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Energy

When life gives you lemons, make lemonade. We all know that, we’ve all heard that adage before. What about, though, when life starts throwing the lemons at you, and they’re actually bombs, and every time they even get near you things get worse than you can even imagine?

We are going through something extremely challenging right now. I can’t share what it is here; things are beyond bad already. But please, all of you who read this blog, all of you who love us, please send us all the good energy you can muster. Please send us a protective shield of love and peace. We need all the help we can get.

energyshield

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Burned

We parents of special needs kids are frequently plagued by burnout. I just read a post on “Love That Max” today about a special needs mom’s head exploding. It was tongue-in-cheek, but quite appropriate. My head feels explosive today—or maybe it feels like it’s already exploded, like there’s nothing left.

Gracie and I came home yesterday afternoon. I am glad to be home, but so apprehensive about how the hospital stay ended.

Yesterday morning, the pediatric infectious disease doctor visited us, informing us that Gracie’s CRP and sed rate were normal so she could not have had an infection. I told him that she has had terrible infections before with normal blood work, but he said, and I quote, “inflammation is different from infection.” This ID doc is relatively new to the hospital, so he was not there in August 2014 when Gracie had a bad infection that streaked halfway up her arm—her blood work was normal then, too. It perplexed her then-ID doc, but the doc didn’t stop treating her. (THANKS for that, Dr. D. Miss you so much.)

Meanwhile, the nurse and the floor’s charge nurse were trying unsuccessfully to start a new IV. They tried three times before the ID doc came in; he told them to stop because Grace could just have oral meds. Oral meds = no need for us to stay at the hospital.

Right after the ID specialist left, the floor doc came in. Again, the floor doc is someone who has never worked with us before—he has seen us there, but never been the doctor assigned to our case. He was very careful not to use the word “infection” in his short conversation with me. He talked about switching Grace to oral antibiotics and getting her discharged “because he could not justify the hospital stay.” I tried to reason with him and watched him bristle at being questioned. Yet another doctor let ego get in the way of patient care yesterday.

Chad happened to be at the hospital through all this, although I don’t think he was aware of the significance. I cried on his shoulder, and decided that I wanted to try to talk to the doctor one more time. We need this hospital. And it makes sense that a doctor who has seen lots of kids with infections in his career would not automatically believe me that Grace is different—Grace doesn’t follow the rules. But I don’t know what I can show them to prove that I’m telling the truth, I’m not just a hysterical overprotective drama mama, if they won’t even believe their own records from a previous hospitalization.

I did speak to the nurse later. The floor doc was literally in the office right next to where we spoke; I know he heard every word. I tried to make the point that Grace is different, that she’s had terrible infections with normal blood work, and she looked in her computer and verified what I was saying. Even so, after that conversation she treated me differently. She was cold, not as nice, obviously careful and guarded. Guess it makes sense… she has to do what her boss, the doctor, wants her to do, regardless of what I say.

I am so tired of this. I am so tired of having these conversations. I’m so tired of worrying about whether Gracie’s care will be affected—if the doctors will not take her infections seriously now unless she is extremely sick, if the doctors will automatically disregard what I say because I’m “that” mom.

Gracie could have probably benefited from one more day of IV antibiotics, but I didn’t fight for it. Luckily, her hand looks a little better today—the swelling is down, the redness is down, the wounds are healing. It worked out okay this time, even though I didn’t fight.

I don’t want to fight. I don’t want to be labeled as confrontational. I don’t want any of this—I just want my kid to get better. I don’t want to have to choose words that will soothe a doctor’s giant ego just so he will listen to me. I don’t want to have my child suffer because a doctor is going by what he’s seen his entire career—even though he’s never seen Gracie before and has never seen anyone with her disease, either.

I am so tired of all of this.

This is basically the same reason we stopped seeking treatment at Children’s Hospital. I lost the fight that time—the infectious disease specialist didn’t like it when I questioned her treatment plan, and she wrote nasty things about me in Gracie’s chart. Nasty untrue things. Nasty untrue things that will be in Gracie’s chart forever, that will affect Gracie’s treatment at that hospital for the rest of her life. I can’t let that happen again. That’s why I tried to talk to the nurse yesterday, tried to explain my viewpoint. It didn’t work, though—she was decidedly cold to me for the rest of the day.

I am tired. I don’t want to fight. All I want is for my child to get the best possible care. Is that too much to ask?

Apparently it is.

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3 a.m.

Baby, it’s 3 a.m. and I must be lonely…

Whew, what a night! Not in the fun “let’s hook up after a night of drinking” way referenced in the song, either.

Gracie was admitted again yesterday. We tried to avoid the hospital but sometimes things are simply unavoidable.

We’ve been working toward getting Gracie out of the cast. At last Monday’s ortho appointment, Dr. B. decided to use a shorter cast in order to give Gracie the opportunity to use her fingers and start to regain some hand strength. (The casts have been going past Gracie’s fingers since she re-broke her arm in mid-July.) It sounded like such a great idea, such a great way to start transitioning to no cast at all.

You know what they say about the best laid plans…

We ended up back at ortho Tuesday (the next day) because her pinky finger became red and swollen. The PA and I debated back and forth about the cause of the redness and swelling, but ultimately decided that we could try a new cast to see if it was circulatory. Within minutes of cutting off the original cast, her finger looked less red and swollen, so it seemed that was probably the answer. The redness and swelling never went away, though, and throughout the week Gracie developed various bloody sores on the back of her hand.

The coup de grace was on Saturday. We were at Jackson’s first-ever soccer game and Gracie was behaving terribly. She spent at least 45 minutes in a forced time-out in my arms. She wouldn’t stop kicking and screaming and hitting and fussing, so I wouldn’t let her go. At one point she narrowly missed throwing her head into the brick wall behind us. At another point Chad chastised her for rubbing her hand against the bricks (anyone who feels pain knows that’s not a good idea). She was wild and reckless.

Eventually, she calmed down enough to get out of the time-out. We watched Jackson play for a while (he did so well!), then went to the playground. She was having so much fun and finally behaving reasonably. And then, I saw her hand.

The cast hand already had bandaged wounds on the index and pinky fingers. Both of those bandages were bloody and muddy—never a good sign. As soon as we got home I washed them out, soaking her cast in the process. The wound on her pinky was frighteningly deep; it would need daily soaks. I decided to call ortho and spoke to the on-call provider, a PA we’ve seen many times before. He offered to meet us at the clinic (keep in mind it was Saturday afternoon and the clinic was closed) in order to cut her cast back and evaluate the wounds. He didn’t think they looked infected but prescribed her oral antibiotics anyway, just in case.

I managed to get two doses of Keflex in her before I looked at her fingers Sunday morning. The index finger was bright red and swollen, with what looked like streaking under the cast. Crap—time to go to the hospital!

The ER wasn’t that busy, and the doc came to see her right away, confirming immediately that she would need to be admitted. We got up to the room around 3 pm and had a fairly uneventful evening. Gracie had a hard time falling asleep, but she finally passed out around 9. I watched some Netflix and went to sleep around 10:30.

Gracie’s antibiotics were due at 11, and I was drifting into sleep when the nurse came in for that. I sleepily heard her walking around the room, and suddenly felt her hand on my arm. She needed to scan my wrist band because she couldn’t find Gracie’s. I listened as she bustled around the room, laying sleepily in my vinyl bed. The IV infused over an hour, and I heard her come back to stop the infusion, grateful for the opportunity to finally get some deeper sleep. Alas, that was short-lived.

Gracie woke up around 12:30 a.m., moaning and mumbling and generally having trouble getting back to sleep. I snuggled her for a while, but she wouldn’t settle down. I changed her diaper, hoping that would help her calm down, but it didn’t. She got up and went to the bathroom later, but that was not enough to settle her down. We snuggled some more but neither of us could drift off to sleep at that point. She whined and fussed, asking for her iPad, wanting to get up and play, but I wouldn’t let her—it was 2 a.m. and there was no way I was going to let her get up for the day. She was a full-on insomniac last night, and I was helpless to lull her to sleep. The Matchbox 20 song embedded above ran through my head—it was 3 a.m., after all.

Finally, I tried to calm her by telling her a story. I quietly told her a story about a little girl named Gracie who found a giant pillow and fell asleep on it, then started dreaming about floating on a cloud, then dreamed about being a mermaid in the ocean. She was breathing more calmly and finally seeming to settle down—and then the nurse came in. Crap! All that hard work trying to get Gracie calm was for nothing.

It took a good long time for her to get to sleep after that. I have no idea what time it was, because the clock in the hospital room is broken and I didn’t want to look at my phone, but it felt like it could have been almost an hour. The nurse came in again and again after that one time, each time leaving the door open for light to drift in—but also allowing all the loud hallway sounds in too. I silently cursed her each time, praying desperately that she would not wake Gracie.

The nurse came in again at 6:30 a.m. for Gracie’s next dose of antibiotics. This time, she woke both of us. I didn’t even bother trying to make Grace fall asleep again; it was hard enough in the middle of the night and was guaranteed to be impossible when her body clock knew it was time to get up for school.

Today is a waste of a day. Gracie is stubborn and clumsy from sleep deprivation. She refuses to listen to me and also is slipping everywhere when she walks. No amount of bribery can make her lay down with her iPad; she wants to be wild. I am wretched from the lack of sleep; my eyes feel scratchy and near tears, and my brain isn’t processing well. It’s hard to care about keeping Grace down when I can barely manage to get through each moment.

Hopefully we will have a different nurse tonight, one who cares more about being quiet and helping her patients sleep, one who does not feel the need to check on us every other hour. Hopefully I can get Grace to take a nap today so that she will recover somewhat from the sleep deprivation. Hopefully I will not be asked to make any decisions today; that seems beyond me right now. And of course, hopefully this hospital stay will be a short one. That is always the hope.

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Birthday Girl

Gracie turned 6 a few days ago. We celebrated at home with her favorite dinner—steak, cheesy fiesta potatoes (my homemade version of her favorite Taco Bell delicacy), and strawberries—and enjoyed watching Gracie’s glee as she opened her presents. She didn’t get the one thing she wanted most (a Fin Fun Mermaid Tail—totally inappropriate for a kid who can’t walk well, doesn’t know how to swim, and doesn’t have a pool), but she settled for the other toys that are now strewn about our living room.

Grace’s birthday was a little more relaxed this year than it has been in the past. She didn’t spend as much time in the hospital last year, didn’t have as many scary life-threatening infections, didn’t cause us quite as much stress and heartache. Her past birthdays have felt like a limp to the finish line—exhausted and broken, we have dragged ourselves through the year, collapsing as we made our goal. Reaching birthdays has seemed a nearly unattainable feat when we go through so much just to make it through the present moment.

Gracie has been hospitalized on or around her birthday several times. In fact, both of her fingertip amputations happened after late-August hospital stays. She lost the tip of her right index finger when she was just two; she was actually in the hospital on her birthday that year. She lost the tip of her left index finger when she was four. She managed to stay out of the hospital long enough to have her first-ever birthday party but was admitted days later with a nasty infection that streaked halfway up her forearm. And yes, she was four before she got a real birthday party—that’s what happens when you spend half your life in the hospital or at doctors’ offices.

But this year is different. She has no major wounds right now (knock on wood!), and even the huge pressure sore under her cast is healing nicely. She is looking forward to her birthday party, which will be in a few weeks at our house. She requested a mermaid swimming party, but Mean Mommy nixed that—she has a cast on her arm, so a swimming party is a recipe for disaster. Gracie settled for a makeover party instead. She invited all the little girls in her class plus some close friends. The first of her classmates RSVPed tonight, and hopefully several more will be able to join us for makeovers and hairdos. Little girls will run around our yard with full face makeup, chattering and climbing on the playset and generally having a great time.

These little slices of normalcy are something I cannot ever take for granted. Gracie is anything but normal—I mean, she’s amazing, but she also lives a life that most people would never imagine. To her, going to the doctor is normal. Having x-rays is normal. Getting IVs is normal—as is heckling the nurses if they don’t “get the blood” on the first try (or second, or third…). Spending large chunks of time on wound care every night is normal. Falling a lot is normal. Having the mother of all helicopter moms is normal (hey, it’s not easy to keep her safe!). But just running around the yard with other kids? That’s not normal for her at all. In fact, that’s not even something she can really do—she can’t keep up with the others. And having a swimming party? Totally not normal for her—usually she has so many wounds in various stages of healing that I worry about exposing her to the germs in public pools and won’t let her swim. We cannot risk a serious infection; she gets enough of those without the extra exposure to public germs.

Each birthday is a gift, for all of us. Most of us take that gift for granted—we have no reason to suspect we may not make it another year. But for someone like Gracie whose life is so far from normal, the gift becomes more real. There have been so many close calls, so many bad infections that could have ended her life. I will never forget her first pneumonia as an 8-month-old baby, when her arms and legs turned purple because her blood oxygen level was so low. I will never forget the first time she spiked a high fever, when her whole body shook and Chad and I panicked about whether to call an ambulance or load her into the car for an ER trip. I will never forget the knee infection of last summer that did not respond to IV antibiotics for three days, spreading in the hospital until almost her whole leg was infected. I will never forget so many scary moments, so many times her life was not to be taken for granted. And I will never, ever forget that she is a gift—a beautiful, sweet, charming, loving gift of Grace. Her birthday is a gift to all of us.

Happy Birthday, Amazing Gracie.❤

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