A Thousand Words

Posted on October 13, 2022 by saussi77

Sometimes looks can be deceiving.

Today was picture day at Grace’s school. She does remote school so picture day meant we had to go to the physical school building and have her picture taken.

Grace has been sick for about a week with a virus brought home and cultivated by her brothers. Thursday or Friday, I spent the day on the phone with various doctors’ offices because she had a fever, and with a PICC line you have to take every fever seriously. She is doing better now, but still very weak. She’s barely eating and has very little energy.

Also, Grace is still fighting the bacterial infection that landed her in the hospital a few weeks ago. Two steps forward, one step back. Or is it one step forward, two steps back? Either way, it is slow progress trying to heal this infection. She is very ill.

And today was picture day. Picture day meant that Grace had to get dressed and leave the house. Picture day meant that Grace couldn’t spend her day lounging in her pajamas as she’s been doing basically since she got home from the hospital. Picture day meant activity.

In addition to picture day, it was also the day of Grace’s weekly doctor’s appointment. That’s LOTS of activity for someone who has been down and out for basically weeks now. And school pictures were at the beginning of our busy day.

After picture day, we picked up Elliot from preschool and took him with us to the doctor’s appointment allllllll the way across town. It was a long drive, and the sun shone on Grace the whole time. It wasn’t a particularly hot day today, but the Colorado sun is merciless, and Grace overheated in the car. Her head lolled as we drove, and even after I turned the AC on she still looked very ill.

The doctor appointment was uneventful—quick, even. We were on our way back home in a third of the time it took us to get there. Thankfully, the sun was on the back of the car as we drove home, but by this time Grace was exhausted. She rested against the seat, closing her eyes. At some point she actually fell asleep. Her friend called her, though, and she woke up to engage in typical pre-teen activities for the rest of the drive.

After we got home, and after work, I saw Grace’s newly-printed student ID on the counter.

It scares me.

When I see this picture, I see a pale, sickly child. I see a girl with dark circles under her eyes and sunken cheeks. I see a child who has been sick for weeks and is still feeling very poorly. I see a child who I love so, so much, and whose life is less guaranteed than most of us.

I also see a beautiful girl who is growing into SUCH a gorgeous adult. I see a girl becoming a woman.

I only hope she really will become a woman. Times like these are scary, and Grace’s mortality is more apparent than that of most of us. None of us is guaranteed life, but some of us have a more tenuous hold on it than others.

Hang in there, Amazing Gracie. Get well and stay well and let’s leave these scary times behind.

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Resolution?

Posted on July 9, 2022 by saussi77

Ah, the life of a chronically ill person. We spend our days dealing with doctors and insurance companies and therapists and special teachers, and even if these people are not pleasant or do not do what we need them to do, we are basically stuck because of the way the system works. It’s not like you can shop around for a better TVI in the public school system, and there may not be any other options for specialist doctors—like in pediatric infectious disease—because some specialties are extremely niche and you pretty much have to keep all the main specialties at the same hospital so they’ll all work together (theoretically).

A few days after our horrible ER experience, Grace’s pediatrician reached out to me to ask if I was satisfied with the care Grace was receiving from infectious disease. I relayed that no, I was extremely frustrated, but did not know what other options we had since we had such bad experiences at Children’s Hospital. I had started to think that perhaps we could get the adult infectious disease doctors to see Grace. After all, she’s almost 12 now—not the 5-year-old they saw in the interim when our best doctor ever left the hospital. But I knew it was unlikely they’d see a pediatric patient when there was a pediatric infectious disease specialist in the same hospital. Grace’s pediatrician encouraged us to try Children’s again, but I hesitated, remembering all the times that hospital and its doctors had failed Grace.

Grace had wanted to punch a doctor in the face after our experience, as she so bluntly relayed to the ortho PA. I’m not much of a puncher, myself—I’m a writer. The pen is mightier than the sword, and all that. So, after gathering my thoughts for several days, I wrote this email to the infectious disease doctor, to be conveyed by her medical assistant:

We are not satisfied with the lack of care Grace is receiving from Dr. —. Dr. — has never even met Grace in person or seen her wounds with her own eyes. She has repeatedly been unavailable when we have needed her, including during regular business hours Monday through Friday. She is currently refusing to direct antibiotic management for an infection that does not require inpatient IV therapy, leaving Grace with no one to help her. She expects another practice to do what she will not do—see Grace in person and culture a wound—putting an 11 year old patient in the middle of a doctor war. She is unreasonably denying care to a patient who needs her.  

We are at the point where the ER at Dr. —’s own hospital suggested we transfer Grace’s care to another hospital entirely because of Dr. —’s lack of treatment. Grace’s various therapists and other physicians are also advocating that we transfer her care—when there is only one person causing problems for us. We do not want to leave the hospital that has helped us for many years, but will have no choice unless Dr. — can start treating her patient, an 11 year old child with a chronic medical condition who requires regular care and attention from infectious disease.  

Dr. — needs to step up and provide adequate—or exceptional—care to her patients. She needs to be available during business hours without fail, or have a backup arranged if she is on vacation or out of the office. She should have an adequate plan for after-hours care for all of her patients as well. Leaving  patients in the lurch because the doctor does not want to work is unacceptable. Telling patients to find a new hospital because of one rogue doctor is unacceptable. Requiring ER and orthopedic doctors to spend literal hours on the phone because ID will not do the job herself is unacceptable.  

Grace is running out of antibiotics and needs care immediately. If Dr. — will not provide that care, we will have no choice but to go to an entirely different hospital—which is NOT in Grace’s best interest. Dr. — needs to do the right thing and care for her patient.  

Thank you. 

It’s harsh, I know. I felt bad for the medical assistant who received the email and had to pass it along to the doctor. As Chad quipped, her jaw hit the floor when she read that.

Days passed and I heard nothing from the doctor. I had resolved myself to contacting Children’s Hospital after all, and actually even made a phone call to make an appointment there. Then, as so typically happens in medicine, where nothing happens for a long time and then suddenly there is a flurry of activity all at once, the Children’s Hospital infectious disease department called me back and said they wouldn’t see Grace without a formal referral from her doctor. Before I could get that referral, though, I received a call from Dr. — herself.

At first, Dr. — simply presented her viewpoint in a clearly well-rehearsed speech. After some time, though, she and I had a lively discussion about the efficacy of certain antibiotics for Grace, and when or whether inpatient IV therapy was needed. We spent almost an hour on the phone that day, going over everything in the nastygram I sent and with Dr. — explaining her perspective. In the end, Dr. — agreed to see Grace in person the next business day (which was the Tuesday after the Fourth of July).

When we got to the appointment, the MA who had received the email was syrupy sweet. She must hate me, honestly, after all that. Despite a comment or two about how they don’t see patients in the office usually, nothing really happened. Then, a hospital social worker came in the room.

Of course, I was immediately suspicious. Why would a social worker be there? Quickly, though, she explained her purpose. Apparently Dr. — had asked her to come feel out how Grace was feeling after the disastrous ER visit. We spent some time chatting with the social worker, then the doctor came in the room. The social worker stayed. Perhaps Dr. — had wanted a witness, but it was unnecessary. As I said, I’m not the punching type.

Dr. — made a plan to switch Grace to a different antibiotic so she would only be on one drug and not three. She said the name of the antibiotic but I didn’t understand her at first because she has a thick accent. When she said it again, I said, “Oh, Linezolid. Grace has had that one many times. It’s a good drug and it works really well for her. The only problem is her white count drops very quickly.” Dr. —‘s brow furrowed as I said this, and she asked, “Yes, in a couple weeks, correct?” to which I replied, “No, last time she had it it was 2 days before her white count started dropping.” Her face fell. But, she continued with her plan, adding on the requirement that Grace get weekly blood work to keep an eye on her counts.

To be honest, I was skeptical that switching to another med would do anything other than cause worsening, as had happened with the other three times Dr. — had switched the meds. But it seems to be helping, astonishingly. Grace’s finger showed improvement the very next day after switching, and the other areas of infection on her body also seem to be improving. Thank goodness.

When you live this life, you cannot become complacent. There will not be a point where I stop assessing the wounds or stop evaluating Grace’s energy level. But maybe, just maybe, we can take a deep breath now and move forward with the hope that Grace is FINALLY on the path to healing.

And maybe, just maybe, this will get through to Dr. — and she will finally start to treat Grace as an individual who does not react to infections or respond to treatment like the textbooks say she should. We go through this with every single infectious disease doctor, this training period, and hopefully this will be the last major hiccup with this doctor before she truly learns that she can’t treat Grace the same way she treats everyone else.

Grace is one in a million after all—she’s amazing.

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The Battle of the Doctors

Posted on June 26, 2022 by saussi77

Pre-COVID, it was a thing that Grace got sick before, during, or after every single vacation. During COVID, that didn’t really happen, because we were stuck at home and I was unemployed and we just didn’t do the vacation thing. Now, though, I have a job again and life is getting to be the new normal, and it turns out that some things never change.

I had to use some vacation time this week, and after looking into VRBOs/hotels, we decided to do a staycation instead and spend time doing fun things each day. The kids and I decided that we would go to parks and swimming pools, maybe even a museum if we wanted to. Everyone was excited.

Meanwhile, Grace had some very bad wounds on her fingers (that is a story for a different blog post), and one of them turned south the week before our staycation. On Saturday two weeks ago, the finger I was worried about became swollen and had a red ring around the tip of the finger—classic signs that the infection was starting to worsen. It was not yet at the point of needing hospital care, so I called her infectious disease (ID) doc. The ID answering service said the doctor wasn’t taking calls and we would have to call the hospital, which means we would have to go to the hospital. I called the pediatrician’s office next, and after a few transfers, I was speaking directly to Grace’s pediatrician, who knows her well and has been alongside us on this journey for many years. Grace’s pediatrician instructed us to give her a second antibiotic we had on hand and to follow up with ID as soon as possible (she was already on one antibiotic when the infection happened).

The medicine the pediatrician prescribed started working, albeit slowly. On Monday morning, ID called and set up a telehealth visit for the following day. (Side note: telehealth doesn’t work for finger infections. How can you possibly evaluate an infection properly over a screen?) During the telehealth visit, ID changed up Grace’s meds—she told us to discontinue one of the antibiotics and start a third one instead. We picked up the new medicine the next day, Wednesday, and gave her the first pill that night. By Friday, the finger had worsened again, so I called ID. No one answered. I called a few more times that day and also sent an email, but did not get a response. Finally, I decided to give her the original med again, since it had been working, and since I couldn’t get a response from the people who were in charge of medication management. Maybe she had meant for me to continue it anyway. By Monday, the finger was showing significant improvement. The combination of the three meds was working.

On Tuesday, ID called me back finally, and told me to discontinue one of those three meds (the one she had prescribed the previous week). She also told me that she was not able to continue shooting blindly with meds and we should go to the hospital for admission if any worsening occurred. I explained that every ID doc we’ve ever had has tried to keep Grace out of the hospital as much as possible, but she insisted that we would need an admission for IV meds if the finger worsened. She also said she wanted ortho to do a biopsy of the finger for culture so she could find targeted antibiotics.

That night, as instructed, I did not give her the dose of the third med, and by the following morning (Wednesday), the finger was considerably worse—more swollen and bright red. As instructed, we packed a bag for an admission and headed to the ER. We got there around 3:15 or 3:30 and spoke to the ER doc almost immediately. I explained the whole saga to the ER doc and showed her the pictures of the finger. She listened, then left the room to make some phone calls.

Three hours later, she finally came back into the room. She said she spoke to ortho, who did not think Grace needed to be admitted and said they could do the biopsy outpatient in clinic. She then spoke to ID, who again insisted Grace be admitted. The ER doc said she agreed with ID and was going to admit Grace. She left the room again, and Grace had X-rays and had an IV started, but no meds were hooked up.

Another three hours passed, and we started to wonder if they’d forgotten about us. Grace begged me to go find the nurse and ask what was happening. Instead, I found the doctor and told her that Grace was starving because she hadn’t had any dinner (it was after 9 by this time). The doctor said she’d find something, and pretty soon the nurse came in with a boxed lunch from Einstein’s with a bagel sandwich, chips, and a cookie, plus a giant Gatorade. Even more amazing, she came back a minute later with another boxed lunch for me—she said, “I realized it was incredibly rude of me not to offer you food too.” Actually, in hospitals usually they do nothing for me—it’s only Grace who gets anything, food included—so I was especially grateful. I took the meat off the sandwich and scarfed it down. They were the best sandwiches either of us has ever had.

Grace and I giggled and had fun eating our bagel sandwiches, but before we could finish, the doctor came back into the room. She pulled up a chair and sat down with a sigh. She explained how after making several phone calls, the floor doc would not agree to admit Grace because the infectious disease doc wouldn’t tell her which med to give. The infectious disease doc insisted that ortho do a biopsy first, but ortho didn’t think Grace needed to be admitted for a biopsy; they could do it outpatient in clinic. Without a med to give Grace, and without ortho to do a biopsy, she could not be admitted. The ER doc suggested we go to Children’s Hospital to see if they would take care of Grace. We can’t go there—we haven’t been there since Grace was 3 and there is a whole lot of important history that they don’t know about and won’t take my word for, like the fact that Grace can have normal blood work and have streaking infections, or the fact that she has failed antibiotics multiple times including this one, or many other instances for which Children’s Hospital has been absent. Also there’s the fact that the main doctor who would have to agree to see Grace committed malpractice on her and refuses to care for her again, so we really, really can’t go there.

Grace was extremely upset. She felt like the hospital was just going to let her die—like they didn’t care anymore what happened to her. She was horrified that they would do this to her. Unfortunately, this was her first taste of how the medical field fails people with disabilities, but surely it won’t be her last.

Because no one could prescribe an antibiotic without infectious disease’s approval, and because Grace can’t stop taking antibiotics entirely with an infection that bad (that WOULD be a death sentence!), I asked the ER doc if I could give her the three meds that had been working before ID screwed with them, and we could follow up with ortho in the morning to see if they would do the procedure outpatient. The ER doc said that sounded like a good plan and assured us that ortho would do it within the next couple of days. (I knew better—no one at that practice will touch Grace except her regular doc who is out—but the ER doc was convinced.)

Around 11:15 that night, we left the ER and came home to sleep in our own beds. There are many parts of that sentence that make me feel grateful. I did not want to be away from my children and animals and home and food for several days, but of course I’ll do anything for Grace if it’s necessary. Grace was not as happy; hospital stays are mommy-daughter time and she cherishes that.

The next morning, I debated whether to call ortho, knowing in my heart that they weren’t going to do anything. At about 9:30, ortho called me and told me that J was going to see Grace at 3:15. I asked, “Will she do the biopsy?” and the person on the phone assured me she would do whatever it takes. We decided to visit the splash pad that morning. At this point, without being under a doctor’s care for this infection, we might as well just live our lives and enjoy the time away from the hospital. We splashed and frolicked in the sun, then came home at lunch time and got ready for the appointment. Grace was worn out from an hour and a half at the splash pad. She is clearly not 100 percent—her stamina just is not there. But we hustled out the door anyway and arrived at our appointment a few minutes early.

Not too long after our scheduled appointment time, we were taken into a room. J came in. She is a PA that we saw first during our 2019 disaster, and she instantly recognized Grace. She explained that she had been the person who had talked to the ER doc the previous day—six times. She also explained that Grace’s regular ortho and another ortho in the practice had discussed Grace extensively and decided that no one should cut on the bad finger in fear of making it worse. She was explicitly told not to do anything, and as a PA she could not disobey those orders.

I don’t even have words to express how frustrating this was.

I tried to reason with her, that all we wanted was medical care for the child in the room and no one was giving it to us because the doctors were all too busy fighting amongst themselves. She said, “I’m frustrated too. I spent hours on the phone yesterday and yet my hands are tied.” I tried to be polite to her, to be nice, while feeling extremely let down and frustrated, but Grace did not try. She said, “I want to punch a doctor in the face,” prompting me to have to scold her and say “We can’t say that here!” God forbid they refuse to see us in the future because Grace became violent. I told J, “It feels like you’re saying your practice doesn’t want to care for Grace anymore.” She said no, that’s not true, but they can’t do this thing this time. She eventually left to get the other doctor who was supervising her. (Grace later said she couldn’t decide which doctor to punch. I can’t say I blame her. They are all failing her at this point.)

The other ortho doctor was very nice, very charming, and he did nothing. He did ask what antibiotics Grace was taking and I told him that since no one would direct it I was giving her all three meds that had been working. He said, “That’s good, that casts a very wide net. Keep doing that.” So, although no one can officially prescribe anything, now two doctors have told me that what I’m doing is a good idea. I guess that’s better than nothing? Sure would be nice if the doctor in charge of medication management would fricking intervene. He also said that he would have to leave this up to Grace’s regular ortho and was not comfortable doing any debridement or anything else for Grace due to her complexity. He mentioned that he thought Grace’s regular doc was in the office the next Tuesday and they’d be in touch, then left the room.

Leaving the ortho appointment, both Grace and I were extremely upset and frustrated. Grace again felt like the doctors were abandoning her, like they didn’t care whether she lived or died. At that point, we both needed something to make us feel better in that very moment, so I decided to take Grace clothes shopping. She’s my not-so-little-anymore fashionista and she loves clothes. We hit up Forever 21 and bought her several new outfits, and she was giggling and having a great time. I still felt like I could cry at any second, but seeing that Grace felt better was a huge relief.

At this point, although I know the ID doc is a good doctor and is smart, she’s my choice for who needs to be punched in the face first. She is causing a ton of problems for us and is alienating us from other doctors and practices. Even though what she’s doing is a best practice for ID, it is a worst practice for the actual patient in front of her, and maybe if she were willing to see Grace in person she would be reminded of the face behind the chart.

Since we are now going rogue with no official medical treatment, I decided that we should just continue with our original plans for my week off work, and we went swimming Friday. Normally pools are extremely scary, because other people’s bacteria are in there (including poop bacteria!) and chlorine doesn’t kill everything. At this point, though, if Grace got worse she would be admitted and the hospitalist would have to intervene, and with the three antibiotics she’s unofficially taking, she is likely covered for most infections anyway. And, as long as the pool doesn’t have very many other people in it, the chlorine is a good cleanser for the rest of her wounds. Sometimes you have to weigh your choices and choose the one that is going to give you the most life. On Friday, that was a visit to the local swimming pool.

It’s now Sunday and Grace’s fingers are doing much better. She is still low energy, but all in all she seems to be recovering. We have not heard from ortho again and I don’t know if they will call us. I am so frustrated with all of the doctors and don’t want anything to do with any of them—we’ll keep going until one of the prescriptions runs out, and then we’ll evaluate whether Grace needs continuing treatment at that time. We are on our own for now.

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IEP

Posted on October 28, 2021 by saussi77

Parents of school-age special needs kids know what this title means and likely have a visceral reaction to the three little letters. An IEP is an individualized educational program, a/k/a the legal document that guides a school district’s provision of special education services.

Grace’s IEP meeting is tomorrow for this new school year. For the past few weeks, she’s been doing testing and evaluations, much to her dismay. Today, the draft IEP and testing report came in. I’ve got to say, they did a pretty good job. Grace’s strengths and limitations were accurately measured and reported by the IEP team.

I’ve been telling the SPED coordinator that Grace is incredibly smart, but she is having extreme challenges accessing the curriculum. She can’t see the work she’s supposed to do, so she becomes frustrated and shuts down, refusing to do any more work. By the end of the school day, she’s absolutely fried, and the grades in her two late-day academic classes absolutely reflect that. She’s missing a lot of assignments for her later classes, and although all of her teachers say she’s delightful and contributes well, her grades are dismal.

Despite all of the roadblocks we encountered trying to get to this IEP meeting, I’m heartened that the school has an accurate view of Grace. However, it can be a bit depressing to see all of those diagnoses and test results in writing. It’s not inaccurate, but it’s hard to see in writing that she has significant limitations due to her disabilities.

The other side of this coin, though, is hope—hope that we might be able to figure out solutions, hope that she will be able to get through this, too. But IS there a solution? Is there a way we can get her to access the curriculum? Everyone agrees that she belongs in a regular education environment and the IEP is the legal document that guarantees she’ll spend as much time there as possible. But how can we make it so she can do her work when so often she can’t see it?

Reading through the IEP tonight, I couldn’t help but wonder at this life we’re living. This life of specialists and therapists, this life of hospital stays and life-saving interventions, this life of limitations and challenges. What a crazy thing that we have a team of doctors who know Grace from years of visits and emergency procedures. What a crazy thing that we don’t have time for homework after school because we have a different therapist appointment every day. What a crazy thing that this incredibly smart kid can fail, simply because school isn’t designed for the blind. What a crazy, crazy life we lead.

Most parents of special needs kids will tell you how devastating it is to think those kinds of thoughts. Looking at where your child is compared to where other children are can be absolutely soul-crushing. So you learn to measure differently. What does it matter if my child meets the gross motor milestones, after all, when she can make any therapist fall in love with her within minutes? Why should I worry about reading comprehension scores when this kid could have died so many times? It’s all about perspective.

We have often sacrificed academic success, knowing that keeping Grace alive was the number one priority. There will be time to learn to read AFTER the infection is cured. Even though that put her behind her peers, it was the only choice to make.

Now, she’s healthier than she’s ever been, thanks to COVID-related isolation. So now, it’s time to learn the academic stuff.

Here’s hoping her new IEP will put her on track for success.

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Accommodating

Posted on August 18, 2021 by saussi77

Today is the first day of school—and Grace’s first day ever at this remote school. There have been several technical difficulties throughout the day. We can’t get to her classes from her district-issued device, so she’s using her personal computer. She can’t get into any of the Google docs because she’s not using her school device. Some of her classes don’t even have teachers yet, because the school’s enrollment ballooned over the past two weeks and there aren’t enough teachers for all the students. But by far the hardest thing to deal with so far today is the lack of accommodations.

Our main reason for returning to the school district (not homeschooling) was to get Grace’s vision services back. Her vision has deteriorated considerably over the last year and a half (since the last time she was in-person at school), and she really, REALLY needs help now. Many of her teachers have asked for the kids to read and write today, and she just can’t. She can’t really find what she’s supposed to read, and since she refused to learn to type, she can’t really answer questions in chat either.

When Grace was first enrolled in this remote school, I reached out to anyone I could find to ask about accommodations. I discovered pretty quickly that there wasn’t a special ed teacher, and really there wasn’t anyone in charge of special ed either. Eventually, I was able to get in a group email with the assistant principal and counselor, and I sent her IEP and health plan to those folks. I stopped worrying about accommodations, thinking that maybe it wouldn’t be as big of a deal at remote school. Turns out they are a huge deal.

In many ways, the accommodations listed in her IEP really don’t apply to remote school. Things like preferential seating and large print are emphasized, but there’s really no mention of how technology can be used to help her. This is a huge oversight, I now realize. Her former TVI tried to help her use technology but it never really made it into the IEP, at least not to the extent where it would be legally protected now.

Starting at a new school is always difficult, but there is an extra layer of difficulty with the missing accommodations. We had such an easy time with the SPED staff at her old school—they were always so easy to work with. I miss them now; it has not proven to be easy to work with the new school, though that’s mostly because of staffing issues. However, I’m sure we can get through any obstacles that are in our path. We have overcome so much already as it is!

We have always had to rewrite the books for Grace. Now it looks like we’ll have to rewrite the IEP accommodations, too. I hope her new school is up for the task. Legally, the district has to accommodate her, and hopefully they will choose to provide those accommodations at the remote school. Overall, it seems like the school will be a good fit for her—as long as they work with her disabilities.

Here’s to a new school year and a new set of challenges!

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Hello Darkness, My Old Friend

Posted on August 13, 2021 by saussi77

The lyrics to the Simon & Garfunkel song, “The Sound of Silence,” have a special meaning because of Art Garfunkel’s best friend, Sanford “Sandy” Greenberg. Sandy unexpectedly lost his vision while in college with Garfunkel, and Garfunkel helped him regain his independence. The reddit version of the story is available here. It is inspiring not because Greenberg overcame his disability, but because he learned that he could live with it. He learned that life didn’t end when his vision did.

Last night, Gracie couldn’t see her dinner plate. She could not find her food. After some moments of frustration, she allowed me to load up her fork with bites. Eventually, she was able to consume most of the food—enough to satiate her, anyway.

Her world is going dark. The shadows creep silently through her vision, clouding the present and darkening the future. As darkness squeezes in from every side, the possibility of Grace becoming an independent adult shrinks practically to oblivion. As I loaded up her fork last night, my dreams for her future vanished into darkness.

Grace no longer dreams of being a pop star when she grows up. As she matures, Grace’s desires for the future mature. She wants to have a job, get married, be a mom. She thinks she could be an excellent counselor. I think she could, too. She would be good at so many intellectual pursuits, provided she’s accommodated at college.

She’s so smart and beautiful that she will probably have no problem finding someone to fall in love with her, too. But will that someone take care of her? Will they load up Grace’s fork when she can’t see her food? Help her in the bathroom, help her in the shower, help her when she falls, help her with wound care, help her live her best life?

Maybe someday, there will be a Garfunkel in her life who can help her understand how to be independent and why it’s important. Maybe there will be an inspiring happy ending to her story, too. But right now, it’s hard to see anything except the encroaching darkness.

Darkness, you ain’t no friend of mine.

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Back to School

Posted on August 4, 2021 by saussi77

It’s August, and that means it’s back to school time! Although we all enjoyed homeschooling last year (well, maybe “enjoyed” is a strong word), the big kids are going back to public school for this coming school year. Jackson, who is fully vaccinated, is going back in-person to our neighborhood school. Grace, who is not old enough to be vaccinated, is going to do the district’s remote option.

As Delta variant cases rise, so does my anxiety about Jackson going back to school. I don’t think he’ll get sick from COVID, but he could definitely bring it home. After all, schools are the original germ factories. And that puts Gracie at risk.

We have been very lucky so far to have avoided COVID infection. Of course, we are careful—we don’t go out around people much, we wear masks indoors, etc.—but it still feels like we are playing Russian Roulette. It feels like we could be one turn of the barrel away from a devastating infection.

(Side note: In a heroic display of love and affection for his wife and daughter, Chad received his first dose of the COVID vaccine last week. Thank god.)

Grace has been exceptionally healthy this past year or so, most likely due to staying home, masking, and not being overly exerted from school. She will have all those things on her side again, which is great, but because Jackson will not be staying home, there are a few more rounds in the Russian Roulette barrel—a few more opportunities for her to get sick.

As much as I would love to homeschool them again, it is not the best thing for Jackson. He misses his friends so much. He would love the structure of the school day, and the activity that comes with gym class and recess. He needs to go back to school.

Grace could do homeschooling again if it were not for her worsening vision. There are no private-pay vision services available. Apparently Medicaid won’t pay for vision teachers to provide service in the home, so that’s why there are none who do. So, she has to return to the district so that she can receive vision services. At least there is a remote option. She can “work from home” while I work from home. We’ll both sit at the kitchen table with our laptops and do our thing.

Sometimes, there is no way out but through. All we can do is cross our fingers and hope for the best. And if the best doesn’t work out, we’ll change direction and do the next right thing.

That’s all we can do.

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Vaccines, Again

Posted on July 29, 2021 by saussi77

A couple years ago, I wrote a blog post about vaccines and how becoming vaccinated protects those among us who are unable to be vaccinated. Since then, as we all know, the plague hit. I feel like it’s time to revisit the topic of vaccines with my personal slant. Because there’s a side to this topic that haunts me, which very few people know about.

When the plague known as COVID-19 first hit I wasn’t really worried about my own chances of survival. I’m strong and healthy, and while I never doubted that it would suck to have COVID, I didn’t think it would really hurt me long-term. Gracie, however, is a different story. “Healthy” is a word that has never applied to her, and with her slow healing and antibiotic resistance, a bout with COVID could be life-threatening for her.

When I was able to receive the COVID vaccine, I cried tears of relief and gratitude. I had assumed that because I was a healthy work-from-home-mom, I would be the very last person eligible for the vaccine, but when I became a CNA, the home health agency that employs me offered me the opportunity to get the COVID vaccine. It was amazing and I cannot begin to express the gratitude I felt to so many people/entities—the home health agency, the scientists who developed the vaccine, the people working so hard at the vaccine clinics, etc. My vaccinated status provided a layer of protection to Gracie that brought an immeasurable sense of relief during an otherwise anxiety-fraught time.

Before too long, the vaccine became available to all people 16 years old and older. Although the plague hadn’t ended, millions of people received their vaccines, providing even more security for our grocery store and Target outings. And then the vaccine was opened up for anyone 12 and older. Many more lined up to get their shots, Jackson included. It was a proud day for me when my son pulled up his sleeve for the COVID shot. He absolutely wanted the vaccine—he said, “Duh. Of course I want it. Why would I want to get COVID?”

But millions more refused the vaccine. One of those vaccine-refusers is my husband.

Shocking, right? That someone with an immunocompromised child could refuse a vaccine? That someone could cite concerns with the way COVID has been reported (well over 600,000 people have died in the U.S. alone! If even a third of those were incorrectly reported, that’s still almost half a million people!)? Or the fact that most of the people who have died are over age 75 (HOW does that justify anything?!)? Or that the vaccine is made with a new scientific process, previously untested (yay science! yay progress! yay technology!)?

And here I am so grateful for the modern medical technology, so ready and willing to receive a vaccine. My husband and I could not be more different.

COVID is again surging, well into 2021, with the rise of the deadly Delta variant. The Delta variant is causing more severe illness among younger people—previously healthy people in their 20s, 30s, and 40s are requiring hospitalization. The difference is that the vast majority of those who are so ill they need hospital care are the unvaccinated. You know, like Gracie and Chad. Gracie is unvaccinated because she is not eligible for the vaccine; it’s still being tested for children aged 2-12. Elliot is also unvaccinated, though he is healthy and strong like me. And Chad is unvaccinated because he believes COVID is not serious to anyone under age 75, and that the previously untested vaccine is not safe.

I’m sure you can imagine that our differing stances on vaccinations have caused many fights between my husband and me. That’s not the only issue causing fights, naturally, but it’s certainly a hot topic. When we got married, we knew we were very different people—Chad used to say, “I’m a Republican and you’re a Democrat and that explains it all.” Perhaps that is still the defining rift in our marriage, but ever since Trumppa the Hutt’s evil reign, that rift is much more pronounced. It’s such a wide chasm that it seems impossible to find a way across.

Maybe if I hadn’t had Gracie I would be a science-denier, too. But I’ve seen modern medicine save her life many, many times. I’ve been forced to rely on doctors—even ones I didn’t particularly like—to offer her life-saving treatment more times than I can count. And I do not believe that anyone is “out to get us” or has any ulterior motive for creating a new class of vaccines. Honestly, I think it’s amazing to be on the cutting edge of scientific technology. If that makes me a sheeple, so be it. Baa.

So there’s my dirty little secret. For all my pro-vax stance, for all my trusting modern medicine and working SO HARD to keep my daughter alive and as healthy as possible, I’m as good as a hypocrite. My own household is not fully protected. I cannot force my husband to get vaccinated, and no amount of facts and reason will sway him. No amount of marriage counseling will bridge this divide. This may just be the hill our marriage dies on.

I don’t know how this story will end. But I can only hope that it will NOT end with Gracie contracting COVID and ending up in the hospital. I can only hope that she will be able to stay well until vaccines are available for kids her age. And I can only hope that someday, somehow, my husband will see reason and get the vaccine—but I don’t think he will.

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Healthy

Posted on May 30, 2021 by saussi77

Last year was such a difficult year that, when people would ask what good things happened, I couldn’t think of anything. But after some reflection, it turns out there were some good things that came out of the pandemic.

First and foremost, Grace is as healthy now as she’s ever been. Ironic, right? The entire world shut down because of a virus and she got healthier. Staying home prevented her from getting the usual array of respiratory and stomach viruses that spread like wildfire through schools. But in addition to this, being home meant that Grace didn’t use as much energy throughout the day, and therefore was able to conserve her strength for fighting bacterial infections. We were able to ward off several bad bacterial infections at home—some by the skin of our teeth—and it has been a year and a half since her last hospitalization. I’m pretty sure it’s the longest she’s ever gone without an inpatient stay. And good thing, too, because it would have been very hard on the family to have Grace and I in the hospital. Elliot couldn’t have gone with us because of COVID restrictions. Actually, Chad and Jackson and Elliot couldn’t have even visited because of COVID restrictions. Elliot would have suffered terribly from not having me and Sissy around, from having to change his daily routine so drastically. It is a very, very good thing that she stayed out of the hospital.

Because of this newfound health, I am reticent to send her back to school once she’s able to be vaccinated (hopefully this fall!). She’s thriving at home. She doesn’t want to go back either; she doesn’t even want to do the remote option I enrolled her in for the fall. We will see if she gets overexerted with the remote option. I can always pull her and homeschool her again if it’s too taxing for her. But the benefit of the remote school is she will get time with her vision teacher again, and since her vision is drastically worse than when she last attended in-person school, this is a huge selling point. (Grace doesn’t think so. She doesn’t want to see her vision teacher and doesn’t want to go blind—but that’s a different story entirely.)

The other pandemic pro is also related to Gracie. Grace has been trying very hard not to bite her fingers. Thank the good lord!!! Her fingers will take a long time to heal, as they have deep fissures where the tissue has a hard time pulling together, but this is a HUGE step in keeping her healthy. The only new injuries on her hands, in general, are accidental—and she still has plenty of those. For the first time in years, Gracie has fingernails! She is able to paint the four nails that grow (both thumbs and both pinkies) and loves it. (The rest of her fingers are too mangled to grow nails, or else they’ve had amputations and the nails will not grow.) For so many years, I wondered if she would ever stop biting. It was a horror that seemed neverending. But now, amazingly, she stopped. She’s working so hard not to bite. She still slips up now and then but at least I’m not finding hamburger fingers every other day. In fact, even when she slips up she’s not biting as severely. This is a definite improvement and I’m so proud of her. And it has contributed majorly to keeping her healthy, so that’s a plus too.

There is no doubt that this past year was ROUGH. A post describing all the horrible things that happened would be far too long for anyone to enjoy. But there was good, too. It took me a long time to see it; I was enmired in the dark and couldn’t notice anything good. But sure enough, two major benefits emerged from the pandemic. I am grateful.

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The Un-Resume

Posted on March 22, 2021 by saussi77

Since I was laid off last June, I have applied for several jobs, but only got an interview for one. After that interview, I realized that it will take a special employer to hire me. I need to be fully remote, and I need to have enough flexibility to take my special needs child to multiple appointments each week.

One night, while I was laying awake stressing about how I would manage a 40-hour-per-week job, I realized that what I really need to do is write an un-resume. So here, dear readers, is my un-resume.

Susan is a hard worker. She is up all night with her children and still manages to cook them eleventy million meals per day. She works hard to pick herself up from blow after blow, as appliances, electrical circuits, bathroom fixtures, cars, etc. break down in front of her. She tries to remain positive but actually she’s been failing at this lately, since it seems like she just can’t catch a break, and the hits come faster than the good stuff.

Susan is a real go-getter. She goes to therapy appointments for her daughter, goes to Costco, goes to the grocery store, etc. She also is going crazy, since costly repairs of just about everything keep being necessary and there is not enough money to go around. The one place Susan would actually like to go is to bed, but then she wouldn’t be able to sleep anyway because stress causes insomnia.

Susan gives 150%—to her kids. They are her whole world and she would do anything for them, at any time, in any place. She spends hours per week dealing with medical personnel on her daughter’s behalf. She has the ability to multi-task, juggling cleaning up her toddler’s frequent messes, her daughter’s anxiety, and her older son’s teenage angst.

Susan requires a job that will be completely remote so that she can continue to take care of her kids while working. This means that she will not be able to give her full attention to anything, especially not detail-oriented tasks like editing, unless her kids are quiet for five freaking minutes.

Susan managed to convince the Colorado Legislature to change the law for her special needs child in 2018. Did I mention that Susan has a special needs child? This is a big deal for any employer, because it means that she has to work harder to take care of her child while she’s also working for her employer. It also means that she may occasionally have medical emergencies to deal with, and will have to work from the hospital at times. This is another reason she has to be a remote employee—she has to be able to take her work with her as she spends a week in the hospital and another week running to multiple doctor’s appointments to follow up.

Susan is also a Girl Scout troop leader. Do you want to buy any cookies? Just kidding, the cookie sale ended yesterday. But each year, she will post the link to her child’s cookie page multiple times during cookie season and will hound you until you buy cookies.

Susan recently passed her tests to become a Certified Nurse Aide. This has nothing to do with editing, but if anyone needs their butt wiped, she can totally do it.

Susan is familiar with and comfortable using Zoom for meetings and assignments. Her children have a habit of popping into the frame, so she tends to use a virtual background, which is okay until the little blonde head appears in front of her. Surprise! The children also tend to scream and shout during the Zooms, so she keeps her microphone muted as much as possible. Fortunately, they are experts at screaming the exact moment she unmutes.

Experience: 13+ years as a Legal Editor for various legal publishers. 13+ years as a mom, 10+ of those as a parent of a special needs child. About 3 days as an official CNA.

Education: Bachelor’s Degree, English, 1996-2000. School of hard knocks (yeah, it’s corny, I know), 2020-2021. Parenting school, haha, jk, this doesn’t exist.

So there you go, folks. Who wants to hire me now?

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