Today is Thanksgiving, a day to give thanks for the bounty around us. I have so much for which I’m thankful, and though it may be cliche, I would like to share some of those things here.

First and foremost, I’m thankful for Chad. We are not a perfect couple but we’re perfect for each other. He loves me and I love him and we’ll be together forever, till death do us part. Thank goodness.

And of course, I’m very thankful for my kiddos. Jackson is so sweet. He is a caring and sensitive little boy, and he fills my heart with love. I am grateful to him for making me a mother. He is a great kid and I love him so much. And Gracie—so thankful for Gracie. Because of Gracie, our lives are more stressful and chaotic, but also because of Gracie, our lives are so much richer. She brings us so much joy. Her beautiful light shines through our lives, bringing grace and love.

I am thankful for my sweet Sis who is the Best Sister in the Universe. She has always been and will always be my bestie, the one person who knows me better than anyone else and loves me anyway. Aw. Love my sis.

Honestly, I’m thankful for my whole big family—brothers, parents, aforementioned Sis, nieces, and nephew. We have a great family with lots of love and laughter. We have a great extended family, too, all those aunts and uncles and cousins. They, too, are very loving and sweet. And then there’s Chad’s family—they are really loving and sweet, too. I am thankful to have so much familial support.

I am thankful for my job. I love what I do and love the people I work with. Even though I’m a terrible employee—taking emergency vacations to the hospital, having at least one doctor’s appointment each week (more than that now, since appointments for me and Chad have joined the mix), having to take care of my kids while working at home or in the office, etc.—they have always been very cool to me and they seem to value me. I’m lucky to be in such a good employment situation.

I am thankful for my doggies. I love them both—Sirius, the 100+ year old man, is one of the best dogs I’ve ever known. He loves me so much; he would do anything for me. He has protected me, he has comforted me, he has been through a lot with me. Although we don’t have many more days together, the ones we’ve had have been awesome. And Norbert, the adorable puppy, is oh-so-cute. He enriches our lives and brings us fun and puppy love.

Even though I’m so sad about losing poor Miss Kitty, I am thankful for many things about her last days, too. I am thankful that she did not have a long and slow decline like the dogs, for which we have to agonize about whether it’s time to euthanize or whether the last days are worth living. I’m thankful we were able to give her a quick and easy death so she didn’t have to die of starvation. I’m thankful I had her as long as I did—she taught me so much and I loved her so. I will always love her.

Along those less-happy lines, I’m really thankful that we live in a country with great health care. Chad and I are both having surgery in the next few weeks—he is having his cataract removed Monday and I am having my gallbladder removed on Dec. 18—but both surgeries are routine and should be a piece of cake for the doctors. Also both of us will benefit from the surgeries, Chad more immediately than me. It’s a good thing that we have these options; we could live somewhere where cataracts aren’t able to be removed or people die from perforated gallbladders. I’m thankful for modern medicine.

I’m thankful for my amazing friends who care about me and my whole family so much. They are a huge blessing. Love them all. My friends have reached out to offer help and support during my infirmity, they babysit when everyone else is afraid to watch Gracie, they have visited  us in the hospital and brought the best gifts ever with them, they have watched my boy at a moment’s notice so that I could concentrate my attention on Gracie, they have taken care of me in so many ways. They are the best.

I’m also grateful for the friends I’ve met through the FB group for people who don’t feel pain. That fateful NY Times article that led me to the group is another thing I’m thankful for—I still remember seeing that picture of 2-year-old Ashlyn with her hands bound to keep her from biting them and crying. Gracie was two at the time, and we had just had her first long hospital stay for gangrene and osteomyelitis from bite wounds that became infected. Finally, after reading that article, I had found someone who knew what we were going through. And actually, there are a lot of someones, some of whom are very dear to me. I care so much about them. I’m so thankful for them.

There’s so much more that I’m thankful for, but maybe this post is long enough. Happy Thanksgiving—thank you.

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I don’t usually write things that are all about me – I’m sure my personality comes through with what I write but mostly I don’t like to share too many of my deep, dark secrets. But today, I’ll break my silence just a little bit.

This month has really sucked. About two and a half weeks ago, my beautiful, sweet, sassy kitty stopped eating. I didn’t even notice at first but when I did I really didn’t think it was any big deal. Turns out it was – she was in the final stages of kidney failure. She was euthanized a few days after she stopped eating. Miss Kitty was my spirit animal, my fellow blue eyed sassy female. I miss her so much. Every time I look at where her food dish used to be, or where she used to lay, or any of her familiar places, I get that pang of reality that she’s not there. My sweet kitty is gone forever. And the worst part is, I could have prevented her early death – she started peeing all over the house a while ago and even though a few people told me that I should take her to the vet, I didn’t. We deal with so much sickness here, and I assumed that if she were sick she would be acting sick. Turns out peeing everywhere is an early sign of kidney disease, and if I’d taken her in we could have prolonged her death for – well, I don’t know how long, but at least a while. She may not have liked taking medicine, or getting regular blood work done, or having her food switched, or whatever, but she would have liked being alive. I am so sorry it ended this way for her. Poor kitty.

Just a few days after kitty stopped eating, I fell asleep on the couch one night and woke up with a sharp pain just under my ribs on the right side. At the time, I assumed I pulled a muscle – I’ve felt pain there before and always assumed it was muscle pain – so didn’t think much. When it got worse over the next few days, though, I started to realize it was something more. I did some Google research and decided it was probably gallstones. The day I put my cat down I also went to the doctor – stomach pain is nothing to mess around with. The doctor was very freaked out, talking about hospital admissions for crying out loud, but by that time the pain had mostly subsided so I didn’t really think it was a big deal. She wanted to get me in for a rush ultrasound, but since it was Friday afternoon she thought it could be Monday before her referral team called me to schedule the ultrasound. It was actually Wednesday, and then they didn’t schedule me for another week and a half. Guess it wasn’t that urgent after all! My ultrasound is tomorrow morning. They are going to do both a pelvic and an abdominal ultrasound, so pretty much looking at everything. The doctor explained that it’s hard to pinpoint pain in your abdomen so even though I feel like the pain is coming from under my ribs, which is where the liver and gallbladder are, it could actually be from a kidney, pancreas, liver, bladder, ovary, or ectopic pregnancy. That last one is pretty much ruled out but nothing else is. Good god.

I know there’s something wrong but have no idea what. I have been paying more attention to the pain since the doctor’s appointment, and have discovered that it feels like there’s something down low on the right side that shouldn’t be there, causing pain in my hip that feels like something’s pressing on a nerve, and also that the pain under the ribs comes and goes depending on how I’m sitting or what I’ve eaten or if I’ve eaten or if I drank alcohol.

I have two fears about the ultrasound – that it will show something or that it won’t. I’m worried that it could be something super serious, but also worried that nothing will show up. Or, maybe there is more than one thing wrong – maybe the pain under the ribs is a gallstone and the pain down by my right hip is something more sinister. I am developing a plan for what to do if both ultrasounds are negative, but don’t even want to think about what if they’re positive. I guess we’ll cross that bridge when we come to it.

Through all this, I can’t help but think how the only thing I have to go on is pain. There is nothing else wrong with me – blood work is normal, no fevers, no general malaise, maybe a little lack of energy but then again that’s easy to attribute to environmental factors. If this were Gracie, how would she ever know? If she had a gallstone perforate her gallbladder, she could die in a matter of hours with virtually no warning. Pain is the only symptom, like so many other things. It’s very scary.

I am not Gracie. I feel pain, maybe less than a lot of people but still it’s there. I react normally to tests. My body does what it’s supposed to do. Doctors can rely on my test results. Whatever happens tomorrow, it will be easier to face because I don’t have a mysterious underlying medical condition. I will gather what strength I have and forge ahead, full of fortitude. Or not. Whatever.

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Today was supposed to be the day we finally got the results of Gracie’s scope, but I had to reschedule the appointment. Chad woke up blind in one eye.

He called me at work, panicking, freaking out because he couldn’t see anything but light and dark in his right eye. I’m sure it was a scary feeling. Eventually, after talking him down from the ledge, he agreed to call his eye doctor and get in ASAP. His appointment was at 12:15; I left work at 11:45 so I could drive him and keep him company.

Good god, what a day. We were at the first eye doctor’s office for an eternity. Chad’s vision loss was heartbreakingly evident, caused by a cataract that went from not that bad to truly disabling overnight. As the hours ticked by, I started to wonder if we would finish before the kids were done with school. Finally, at about 2:30 we left, but not for home. We had to rush to a retinal specialist—Chad’s cataract is so bad that the eye doctor couldn’t see through it to make sure the retina was okay (apparently retinal tears can cause similar fast-onset blindness). The only catch was the retinal specialist needed Chad’s medical insurance card, which I don’t carry and he couldn’t find (I really should just keep his card, too; I have everyone else’s).

Rush, rush, rush. We left the eye doctor, grabbed some fast food, rushed home to look for the insurance card, then rushed out the door to the specialist appointment. I called the insurance company on the way and wrote down Chad’s insurance ID number while driving. I took Chad up to his appointment and explained to the receptionist about the missing card, then rushed out the door to pick up Jackson from school. Meanwhile, Chad called and told me I messed up the insurance number—I didn’t get the prefix. No “thanks for trying” or “I’m the idiot who lost his card,” just “you messed up and now they won’t see me.” I told him I needed to get our son and hung up. Jerk.

I was late to Jackson’s school; he was sobbing by the time I got there. He is a very emotional kid and I try so hard to be there on time every day so he doesn’t freak out, but sometimes things happen and I don’t make it. He freaks out every time. Probably relates to that first long hospital stay of Gracie’s

Rushing again, I took Jackson home, calling the insurance company again on the way to get the three missing digits. Insurance company phone calls are a breed unto themselves, and this call was as frustrating as any. Chad’s brother had picked up Gracie at school, thankfully, and was at our house when I got there. I dropped Jackson off and rushed back to the retinal specialist so I could fill out Chad’s paperwork.

Chad’s retina is fine. He is clear to have cataract surgery as soon as we can schedule it. I got to ask the retinal specialist some questions about Gracie’s retinitis pigmentosa, too, so that was nice. We left that office at 5 pm, totally fried.

Unfortunately, the day didn’t end after that. The kids were worried about their daddy and asked a million questions. They were super clingy and Jackson was being really crazy, like  attention-seeking behaviors times a thousand. I rushed around to make them dinner so we could rush out the door to a Cub Scout meeting. Chad stayed home to rest; the day of having his eyes poked and prodded wore him out.

The Cub Scout meeting ended at 8—Jackson’s and Gracie’s bedtime. We rushed home to get ready for bed. What happened next was not my finest moment as a parent. Jackson wouldn’t get his pajamas on—wouldn’t even take off his coat—so I tried to help him. He flailed and accidentally threw a container of Legos all over the floor, and then immediately said “I didn’t do that!” I lost it. LOST it. I went off on him, let him know that yes, he did that, and no, it wouldn’t have happened if he’d just gotten his jammies on by himself in the first place. I lectured a while on how he never takes responsibility for anything, how all he had to do was say “oops, I didn’t mean to do that,” and start picking up his toys, but instead he immediately lied and said he didn’t do it. He lay down on the floor, a teary mess, still not in jammies and now with Legos everywhere.

I am not proud of yelling at my kid. I am not proud of making him cry and cry. I wish I had handled the situation better. I tried to mitigate the damage by letting him know that even though I was mad, it wasn’t really about him, it was about the crappy day. That even though he made some bad choices and made the whole situation worse, I still love him more than anything else in the world and always will. I hugged him tight, hoping the hug could undo the damage done by the angry words. I don’t think it can; he is a very sensitive kid. He did calm down and get his jammies on, though, so that’s something.

Tomorrow has to be a better day. It couldn’t be a lot worse.

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Leaves swarm fiercely into billowing clouds, then fall away to nothing.

A pure white cleanse blankets the way-back mountains.

Crisp air blesses lungs with wintery kisses.

Shadows lengthen through rainbow leaves, the light sharpening in shortened days.

The season’s first hoar frost whispers promises of coming cold.

Nature paints foliage with myriad brushes as red, orange, yellow, brown streak through still-green canvas.

Pumpkins smile toothy grins, ready to greet little adventurers. Witches and princesses, dinosaurs and daredevils, all greedy for chocolate bounty.

The seasons change relentlessly, blowing through our lives like leaves in the wind.

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Scope, Part 2

I thought about updating the previous post but wasn’t sure everyone would see it so here’s the update on the scope. She did great! They had a really hard time getting an IV started (they always do, especially when she’s dehydrated) but otherwise there were no problems at all. And it turns out I didn’t lie to her at all. They did an endoscopy and a sigmoidoscopy, so they went in through the top and looked at her tummy and upper small intestine and then switched ends and looked at the rectum and lower colon. Her bottom looked fine but she has a hiatal hernia and reflux. The biopsies will show whether the hernia needs to be repaired; we should get the results in about a week.

Right now, my Amazing One is home eating her reward of curly fries. She is scarfing the fries like she hasn’t eaten in a week. She has one more procedure under her belt, and hopefully it’s one that won’t need to be repeated for a long, long time.

Thanks to all who were sending her good thoughts and prayers. It means so much—I truly believe in the power of prayer (regardless of the existence of God, I believe that the collective consciousness can come together to influence outcomes) and I’m grateful for those who sent a little good energy in her direction.


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Gracie is going in for her scope tomorrow. The technical term for the procedure is flexible sigmoidoscopy—not quite as involved as a colonoscopy but pretty much the same idea. I don’t know if it will yield any results as to why Grace had such terrible diarrhea for no reason. If it’s like all of the other diagnostic tests she’s had, there will be an abnormal result but not the one the doctor expected and one that creates more questions but gives no answers.

This will be her sixth or seventh time going under anesthesia, and it still hasn’t gotten any easier. She’s gotten through just fine each time, and she generally does great with the anesthesia and is back to her normal self within hours after waking up. But the thought of the risks of anesthesia is so scary. What if, what if, what if. It’s been especially bad this time because Gracie is afraid of the procedure. Poor girl.

I am not sure why Gracie’s so afraid this time. Perhaps it’s because the last time she was under anesthesia she woke up with half a finger missing. I have been trying to quell her fears; I am probably not the best person for the task. One night, I explained to her, “You’ll go to sleep, and they will take this little camera on a string and stick it down your throat* and take some pictures, then you’ll wake up and feel fine.” Alarmed, she cried, “But will they take the camera out??” Oops. Sometimes it’s easy to forget that she’s still a little kid. I forgot an important detail in that description.

We talked again about the procedure a couple days ago. Again, I told her that the camera on a string would go down her throat* and take some pictures. This time I remembered to say that they would take the camera out. She asked, “Will they have to sew me back together?” I said no, there would be no cutting or sewing. She didn’t understand. “But how will they get the camera in me?” I laughed. “You know how when you eat food it gets into your tummy? It’s going to be kind of like that.*” She wondered then how they would get the camera out, so I explained it was on a string and they would just pull it back out. She seemed less worried after that discussion.

*I thought it best not to explain how the camera will REALLY get in her. That is a whole level of worry I don’t want her to consider. I feel a twinge of guilt about lying to her, but I feel it was in her best interest. She doesn’t need to think about having things shoved up her butt at her young age. Honesty may not always be the best policy, especially with a five-year-old.

This scope is a routine procedure, one that doctors do every day. Even though Gracie will have to be anesthetized, there are very few risks to the procedure itself outside of the anesthesia. And with the anesthesia, she’s been through it so many times before and she’s always been fine. My mother’s heart can’t help but worry, though, so I came up with a little prayer.

Give me strength and courage to face whatever comes.
Give me trust that the doctors will do their jobs well.
Give me faith to remember that God loves us and wants the best for us—all of us.
Give me hope that the outcome will be better than expected.

I will try to remember it.

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We have been very busy these past few weeks — at least, that’s my excuse for not writing more. Grace is averaging two doctor appointments per week, one at infectious disease and one at some other doctor (ortho, GI, etc.). She was supposed to have an infectious disease appointment today but I had to cancel it. Gracie’s class had a field trip today — they saw “Charlotte’s Web” at a local theater. Although we had plenty of notice of the field trip on the 14th, and we all knew Gracie had her infectious disease appointment on Wednesday, none of us put it together that it was the same day. Miss K, Gracie’s amazing para, called me first thing this morning to tell me about the scheduling problem. She offered for me to drop Gracie off at the theater after the appointment, but I wasn’t even sure the appointment would be done by the time the play started, and let’s face it — what’s more important, a doctors appointment or a play? There will be other appointments.

She has another appointment scheduled tomorrow, in fact. It’s her regular yearly checkup, ironically called a “well child” check. The name isn’t ironic for other kids but Grace is hardly ever “well.” In fact, she’s been saying she’s sick for days, and right now she has a low-grade fever.

I don’t know what to make of it when she says she’s sick. I believe her that something is wrong, but since she can’t articulate what hurts (or even what doesn’t feel right), it’s hard to know what to do. I’ve been asking her if her tummy hurts but she can’t tell me. Her finger doesn’t look too bad so it’s probably not that. She could be reacting to the antibiotics — in fact, that seems to me the most likely cause of the fever — but until other causes of infection are ruled out that is only a guess. We will probably have to test for sources of infection tomorrow at her “well” child check. She also needs some vaccinations; we put them off last year because she was so unwell at her “well” child check, and now they are due (her doctor said she could get them at age 4 or 5 so it wasn’t a big deal to wait last year but we can’t wait again now).

Although it’s very worrisome that Grace has a fever while she’s on strong antibiotics, I feel almost numb to the shock. I sit here nonchalantly typing, mulling over whether Grace needs to go to the ER or whether we can accomplish everything at her “well” child visit tomorrow. I may even send her to school if the fever is gone in the morning. It speaks volumes about what we’ve been through that I’m not freaking out right now. Grace has been in this situation before. She has broken a fever through antibiotics, through these particular antibiotics in fact. There are less terrible possibilities for the fever — she could have a virus, she could have an infection that these antibiotics will not cover, like a bladder infection — but if this situation is like the last time this happened, Gracie’s fever is actually a very rare reaction to the antibiotics. Since the words “very rare” attach to the reaction, that must be what it is. Those are Gracie’s words.

Well. Well well well. We shall see what tomorrow will bring. Will we have a visit to the ER? Will we keep our “well” child visit as scheduled? Will Gracie be well tomorrow? Well, we’ll just have to wait to find out.

Update: Gracie definitely will not be going to school. She was up for most of the night with a fever, vomiting, and diarrhea. When the infectious disease doctor’s office opens I will call to see if they want to see her, otherwise we will convert her “well” child visit to a sick child visit and forgo the vaccinations until she’s healthier.

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