Lucky

Posted on March 9, 2021 by saussi77

Lately, several people have pointed out that our family was hit particularly hard by the pandemic. We certainly have had a string of misfortunes, no doubt about that, but it’s hard for me to accept that we were hit hard by the pandemic. After all, no one I know personally has died of COVID—I know families who have lost several people this year, but everyone I know personally who had COVID survived (even a few who were very seriously ill). The families who lost loved ones were hit hard by the pandemic. We have been lucky.

But there can be no denying that several bad things have happened this year. I’m losing my resilience, as the hits keep coming before I even get back up.

First off, I lost my job. This was partly my fault; I knew layoffs were possible and told my executive director that if anyone from my department was laid off it should be me and not my coworkers. I was the new guy, the lowest on the totem pole, and it didn’t seem fair for me to keep my job if others had to lose theirs. And this appears to have worked, because all of my fellow editors are still there.

Then, of course, I lost our family’s health insurance. COBRA was completely unaffordable and I’m not sorry I opted out of that, but I do sometimes wonder why I didn’t try to get a marketplace plan over the summer. It never occurred to me at the time, though it certainly does now. But the reality is that I probably would have opted out then anyway, because we were worried about money and I wouldn’t have thought I could afford the premiums. (I would have been correct about that, too.)

Losing the health insurance wouldn’t have been a problem if Chad hadn’t had his car accident. We were able to pay for the kids’ well visits and our flu shots out of pocket and it wasn’t a huge expense. But man, that car accident is just the gift that keeps on giving. Chad, of course, feels it the most. He is in constant pain, he does not yet have full range of motion, and he can’t even pick up Elliot.

I am dealing with the more administrative side of his accident. I’m dealing with all the medical bills and trying to get the car figured out. Almost every day, I deal with something related to the accident. Lately, it’s all been dealing with State Farm. It’s a very long story, but they aren’t willing to pay for all the damage to the car and they also won’t even allow anyone to assess whether the car is safe to drive. At this point, I’m ready to dump State Farm for good and get rid of the car to whoever wants it, but I can’t because we haven’t reached a resolution of any kind yet.

And then there have been a million other things that have come up, too.

I was supposed to take the skills portion of the CNA licensure test on February 26. My test was at 8 am in Pueblo, which is about 2 hours away from my house, so I got up at 4:45 that morning, got ready, and was in my car at 5:30 am, only to discover it wouldn’t start. I tried for 10 minutes or so to get it started and finally woke up Chad. Together, we tried until about 6:05, when I would have been late for the test anyway. I never did make it to Pueblo that day, and spent the whole day trying to get my car towed to our repair shop, getting a rental car, and also dealing with nasty adjusters regarding Chad’s accident. That was also the day I found out they’re not covering the majority of the damage to Chad’s car. They say it was unrelated. I can’t make them change their mind and they said they would only consider proof that doesn’t exist—pictures of the accident from the day it happened.

I still am not a fully licensed CNA, but thankfully the agency I was working with agreed to keep me despite my failure to test. The test has been rescheduled for 11:30 am next Friday in Pueblo (that facility is the only one offering the skills test at this time, apparently). This was for the job I have been trying to get since July. The only job I *can* get. The only job that allows me to take care of Grace and keep her safe. To miss the test was to jeopardize my only chance at making an income. It wasn’t just a big deal—it was a BIG DEAL. Add to it the $950 repair bill for my car, plus the $350 for the rental, and it was a certifiably bad day.

The latest in the “what else can go wrong” saga is that our washing machine is broken. If we have to replace it, it will be the third major appliance we’ve had to replace this year. It will almost certainly be hundreds of dollars to repair but we’ll find out tomorrow.

It feels like a very long time since we’ve had money to spare for anything. I have been extremely careful about what groceries and household products I buy. I keep having to tell the kids no when they want the latest and greatest toys and in-app purchases, which I hate. I try to only get gas at Costco, where it is considerably less expensive. I downgraded our expenses as much as possible, and yet every time I turn around there’s another hand sticking out, waiting for its due. The financial stress is unbelievable.

And yet, we are the lucky ones. We have family to help us out and give us a safety net when we need it. We have never not been able to buy milk and diapers, thanks to some gift cards friends and organizations gave us. We aren’t literally starving. And most importantly of all, our family is alive and relatively healthy.

There truly have been a lot of things that have gone wrong for us. We have had a lot of hardships since COVID hit. But there are so many things that have gone right, too. We are the lucky ones.

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2020—Year in Review

Posted on December 31, 2020 by saussi77

I feel like a train wreck is a suitable image for 2020.

Oh, what a year! None of us will forget this one for a very long time. We all know the global craziness—the fires in Australia, the police killings and subsequent protests, and, oh yeah, that little thing called COVID-19.

Individually, though, our family had a rough year, mostly directly related to COVID-19. We are not alone; I know several other families who have experienced previously unheard of hardships this year.

Readers of this blog will already know I lost my job in June; the company for which I was working laid off about a third of its workforce due to COVID-related loss of income. Along with losing my job, our family lost its health insurance—I carried insurance for all of us through that job. That caused a couple of hiccups but nothing major until December.

At 7:39 am on Friday, December 11, 2020, I was snuggling Elliot in my bed when my phone rang. A panic-stricken Chad was on the other end, crying hysterically, telling me that he was in a bad car wreck and he broke his arm. In that moment, I urged him to hang up and call 911. Instantly, fear flooded over me. Was he okay? Was someone else hurt? Was it just a broken arm or so much more? Was his car going to be drivable? And then, the more practical, also more chilling, thoughts. We don’t have health insurance, so a broken arm is catastrophic. Also Chad is the only one of us with gainful employment, so a broken arm means he won’t be able to work. Visions of our family sinking fast flew across my mind while I waited and waited to hear from him again. I called about every 10 minutes, willing him to pick up the phone. Eventually, after 30 minutes or so, a firefighter answered the phone. Chad was okay, no one else was hurt, it was just a broken arm but it was badly broken.

At this point, I started trying to find someone to watch the kids so I could be with him (COVID be damned at that point). I scrolled through my contacts, texting a few likely candidates. Gracie’s physical therapist, our family friend, proved to be the angel we needed in that moment. She came over with her boyfriend (also a family friend) and their adorable baby.

When I finally got to the ER, they were getting ready to discharge Chad. Immediately, I was accosted by someone from the billing department—not having health insurance is a big deal for them, too. She urged me to fill out financial aid paperwork immediately, that day if possible, so they could discount our bill. When she let me go back to Chad, I found him in agony. He did not want any opiates for the pain, but it was intense and unbearable. His arm was bent in the wrong spot—he had a huge lump on the side of his arm where the fracture was.

Two young guys splinted the arm and I took Chad home. He was in agony; every time he moved, he could feel his arm “clicking.” He said it felt like his lower arm was dangling. In addition to excruciating pain, he was experiencing those disturbing clicking and dangling sensations every time he moved. He walked gingerly, wincing with every step and every bump in the road.

When we got home, I called the orthopedist to make a follow-up appointment. Although the ER’s discharge paperwork said to follow up with ortho in two weeks, it also said it was a displaced, irregular, comminuted, and angulated fracture. Given the radiology report and the odd clicking and dangling sensations Chad was experiencing, I thought it prudent to get him to ortho ASAP. Luckily, they were able to see him the following Monday.

All that weekend, Chad was in agony. The smallest movements caused him intense pain. I couldn’t help but wonder if the reason the ER chose not to do surgery was because he was not insured. Chad confirmed my suspicions. He said he had heard the doctor talking to the billing person and police officer outside his room, and that they had decided to send him home because he was uninsured. Of course, since it’s illegal to deny someone care for being uninsured, there won’t be anything to that effect in writing, but it’s so messed up. He was in so much pain… they could have helped him that day and didn’t. If I hadn’t been well-versed in medical language, he could have had to wait two whole weeks for relief. Whatever happened to “do no harm”?

Luckily, the orthopedist was sympathetic to Chad’s plight, and agreed to do surgery ASAP. In fact, his colleague was able to schedule the surgery for 7:30 the following morning. Before scheduling the surgery, however, the hospital billing department called me again. “We have to get payment before the surgery. Our estimate of costs is $59,400. With the 66% self-pay discount, that leaves your cost at $19,800. We need a 50% down payment in order to book the surgery.” What the actual fuck?! Who has $10K laying around? The lady on the other end of the line “generously” offered to accept $5K as a down payment, and I called my parents. Thank god for them. They are truly lifesavers. I don’t know what we would have done without them.

After several more hiccups with the hospital, my parents’ $5,000 payment went through, and the surgery was scheduled. The following morning, both Elliot and Gracie woke up early, so we took them with us to the hospital. They weren’t allowed inside due to COVID restrictions. I kissed Chad goodbye at the door and waited anxiously for news while trying to find someone to watch the kids again so I could pick him up. Grace had a doctor appointment that morning, and after her appointment, I dumped all three kids on Jackson’s best friend’s mom. She is another angel! Even though she was working and had to take a test for work that day, she agreed without question to take the kids.

I hadn’t heard anything from the hospital at this point, but Chad called me. He sounded weak and tired but okay. When I got to the hospital, I found out that they had been calling my old land line—they had the wrong number, but no one had bothered to verify it. The surgeon had put a metal rod down the middle of his humerus with two screws at each end to hold it in place. His arm actually looked better after surgery than it had before. The giant lump on the side was gone, and even the swelling in his hand was down.

Somewhere along the way, one of Chad’s friends set up a GoFundMe for us (https://www.gofundme.com/f/help-fix-chads-arm). At first, I was reticent about accepting the help, but I soon realized we were drowning and it was the only way to get through. I still feel bad about accepting donations from everyone, but also I’m so, so grateful. People have been so generous.

Perhaps the thing that has touched me most was the generosity of all the folks I worked with at NITA. So many people there were so generous. It both warmed my heart and broke it a little. I think I hadn’t truly appreciated what a loss it was to be laid off from there until that moment. Such good, kind, fun, interesting people they are. I even received a personal message from my old boss that she would hire me back if she could. Hiring is not going to happen there for a very long time, but it definitely warmed my heart to receive that message. So it wasn’t about me. It wasn’t about my work-product. I was just a casualty of war, nothing personal. It seems vain of me to write those words, but it definitely brought a little warmth to my heart. It has been so hard to see the light, and having all those NITA people give so freely to me was truly a beacon of hope in an otherwise extremely dark year.

The medical bills are starting to come in now. I still haven’t gotten the biggest one, the $14,800 remaining on the surgery, and I haven’t gotten the bill from the surgeon either, but we did get the bill from the ER, the ambulance, and the anesthesiologist. The total amount of bills sitting on our kitchen table right now is about $6,000. We are hoping to be able to negotiate the hospital and ER bills down a little more, although perhaps not too much more. I don’t know if the anesthesiologist will give a discount for self-pay, but it would be great if he did. His bill is almost as big as the ER bill. The ambulance bill will probably have to be paid in full. Thinking about all this makes my heart beat a little faster, makes my stress level rise a lot. Lately, I’ve been emulating ostriches and sticking my head in the sand as much as possible.

There was so much bad this year. It’s almost overwhelming—losing my job, the subsequent depression, homeschooling the kids (to my great feeling of inadequacy), Chad’s mom’s illness, his brother’s babies being born prematurely, Chad’s accident. There’s probably so much more that I’m not even thinking of right now.

The bright spot, for me, was the kindness and generosity of my friends and loved ones. So many people have dropped everything to help us. So many people donated to the GoFundMe on our behalf. NITA and NightLights, an organization dedicated to respite care for special needs kids and their families, donated huge amounts. I am humbled and grateful. Thank you, friends and family and coworkers and EVERYONE. Because of you, the world is a little brighter.

Happy New Year.

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Reflections

Posted on October 6, 2020 by saussi77

Who is that girl I see
Staring straight back at me?
Why is my reflection
Someone I don’t know?

It turns out the kids do well with school when Disney music is playing. The above lyrics are from Mulan, before the village girl becomes the great warrior she is destined to be.

I never before realized how much of my sense of self-worth was tied into my job. I have been employed since I was 14, first as a busser at TGI Friday’s, then into retail, waiting tables, being a mental health worker at a residential facility for children, being a paralegal, and finally as a legal editor for the last 13 1/2 years. I was unemployed for a few weeks last year while I was between editing jobs, but this stint since June has been the longest I’ve been unemployed since I was a teenager.

I don’t even know who I am anymore.

The days fade away into a blur of school and parenting.

I wonder how I was able to get out of bed before and get started on my work so quickly. I wonder how I managed to fit so much into each day, when now it seems I just drag from hour to hour. I wonder what quality of work I did—was I good at it? I wonder if I was chosen to be let go because of my work quality, my personality, my ability or inability to become part of the team? Or was it something else entirely that shaped their decisions of who to let go? I will never know.

I used to be entranced with Facebook, and now I can barely stand to open the app. I don’t want to hear anything about politics anymore, and it seems that’s all that is in my Facebook feed. My friends, people I know in real life, rabidly politicize everything, refusing to see the good in people on the other side of the political aisle. People I’ve never met in real life are the only ones I even want to interact with anymore. Something broke in me when Ruth Bader Ginsburg died, when within three hours both political sides were scrambling to fight again, this time over someone I truly considered a hero, a role model. She deserved better. She deserved a beautiful memorial, not a fight (or at least a memorial before the war began). I just don’t have any more fight in me.

And then there are the family troubles. Not with my side of the family—my family is great—but with Chad’s. They are having a huge family feud, and my children are the losers. My children were abandoned by their aunt and uncle, people they really cared about. My children witnessed those people yell and swear at their mother right in front of them, all while telling me that I was a shitty person who shouldn’t mention their abandonment in front of the children. (I believe the exact phrase used by my darling brother-in-law was “you’re a fucking dumbass and always have been.”) As if the kids didn’t notice that their aunt refused to see them, refused to return their texts, refused even to say goodbye before moving across the country. As if they didn’t notice their uncle angrily grabbing his child by the armpits and leaving without a hug, without a goodbye, on their last night in the state? It’s messed up.

I’m so tired of the fighting. Chad and I finally were able to find common ground again and stop fighting, but it seems the rest of the world is exploding in conflict. I just don’t have any more fight in me. Call me what you will. I don’t care anymore.

When did I become this person? When did I stop being someone I could recognize, someone with goals and dreams and ambition?

Why is my reflection someone I don’t know?

I wonder if getting a job would renew my sense of purpose. I wonder if it’s too late, if the illusion is broken, if the mirror will ever again show my true reflection. Or is this the true reflection, and the other one was an illusion?

All I want is to love and be loved—for me, for my kids, for the world. I want the reflection to show a loving and lovable person, someone who cares and someone who tries to make a difference in the world. Someone who is admirable.

When will my reflection show who I am inside?

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Penance

Posted on September 30, 2020 by saussi77

After a week of sickness burning through our house like this year’s ever-present wildfires, Grace revisited the pediatrician today for another round of bloodwork. It was at her infectious disease doctor’s behest; he does not have the capability to do blood draws in his office and waiting at the hospital’s lab is an all day affair. So, to the pediatrician’s we went.

Although our whole family has had this virus to some degree, Grace has, predictably, been the sickest. She has a deep, thick cough. Her sinuses, which have been congested since her virus of March, are impassable. She has had stomach issues, and is not interested in food. She is pale and lethargic, choosing to spend most days lounging on the couch or bed. She’s got a virus and she’s got it bad.

Naturally, in these days of pandemic-pandemonium, there is one virus at the forefront of everyone’s mind. And today, for the first but surely not the last time, Grace was tested for it.

We were lucky to get in today. Children’s Hospital is doing drive-through COVID tests, but only at three locations in the city (none convenient to us). By the time the infectious disease doctor’s order went through, it was a quarter to 4, and we were fortunate to snag a 5 pm appointment across town at the main hospital.

Grace did NOT want a COVID test. She knows, as probably everyone knows by now, that the test is a nasal swab. The moment the test was mentioned she threw a fit, flatly refusing to do it. When I made the appointment, she said she wouldn’t get in the car. Her anxiety came in handy for this—she won’t let me out of her sight, so when I got in the car, she had no choice but to follow me.

We drove across town to the drive-through COVID test center serenaded by Taylor Swift. Grace tried to sing along with “Wonderland,” but soon collapsed into a coughing fit, then silence. When we got to the test center, we drove through the maze of orange cones to a newly built garage staffed with three young nurses in full PPE.

I said a little prayer of gratitude for those three young nurses. Whether they volunteered for the job or were assigned, they are risking their health and that of their loved ones to test little children for this insidious virus. I am grateful to them and to all the other healthcare workers who so selflessly work for the sickest among us.

When we drove up, there was one car ahead of us. The dad emerged from the back passenger side and went back to the driver’s seat, and a little girl, maybe 4, maybe 6, darted briefly out of the back door. She screamed as she was swabbed. Her cries echoed through the parking lot as a nurse approached our car. It was an ominous greeting.

Immediately, I told the nurse I would have to help hold Grace while she was swabbed, and would possibly need another person too. I climbed into the back seat with her, bear hugging her while she bit me repeatedly as hard as she could. Another nurse rushed over and held Grace’s head while I struggled to contain her flailing arms and legs. Though I weigh nearly three times as much as her, she struggled mightily, and it was all I could do to hold her arms tightly to her chest.

The swab was over in seconds, but the trauma will last. For both of us.

Grace sobbed as we drove away. I thought about pulling over so I could hold her, this time in a motherly embrace, but she cried, “No, please, no, let’s just go home.” She shook and shuddered in the back seat for several minutes, crying from this most recent injustice. Soon enough, she started playing with the toy they gave her, and her tears slowly ebbed.

The bites and bruises on my arm are small penance for this latest crime against my baby girl. It is traumatic for both of us when she has to be restrained for a medical procedure. I don’t feel right allowing nurses to get hurt, so I always volunteer to hold her. But it is heartbreaking. I don’t want this for her. I don’t want any of it for her. I wish I could take it away from her. I wish I could wave a magic wand and take it all away.

Grace apologized tonight for biting me. As her parent, I should probably have asked for an apology. But as a human being, I feel that I am the one who should apologize. Once again, I have forced her into a situation she dreaded, because medicine requires it and doctors have tight schedules. Once again, I held her down while someone probed her body against her will. It is no wonder this child has anxiety. Anyone would.

The bruises on my arm will fade, but the bruises on our hearts will take a little longer to heal. For both of us.

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Compromised

Posted on September 23, 2020 by saussi77

I saw a meme recently that said, “The reason parents are so stressed with the pandemic is we are constantly having to choose between our children’s physical and mental health.” Those words are painfully true. But for most, it’s not a hard choice—even if they got COVID, most kids would be totally fine. Those kids get to go to school, play with friends, do sports, etc.

Not my kids. Mine don’t get to do any of that. And here’s why.

We have been socially distancing for months. We wear our masks every time we go to the grocery store, we have avoided restaurants, we barely see anyone (the kids have each spent time with their besties occasionally, but that’s about it). School has started for everyone now, and both kids are missing their friends, though both are also kind of settling into the routine of homeschooling.

As the Girl Scout troop leader, I realized a couple weeks ago that it was time for Girl Scouts to start up again, too. We can’t meet at the kids’ old school anymore, so we went to a local park for the first meeting last Thursday. The girls all wore their masks for the entire meeting, but when it ended and they ran to play on the playground, they took the masks off.

Three days. That’s how long it took Gracie to get sick after that interaction.

She started with a cough and sore throat Sunday night—she couldn’t stop coughing when we laid down for bed. I wasn’t too worried; she has been having sinus problems ever since she had that month-long sickness in March. I figured it was an extension of that.

The next afternoon, she got a fever. In typical Gracie fashion, she had the fever shakes (a/k/a rigors) for over an hour before the fever spiked. Though it only got up to 101.3, that was enough to concern me. She is already on antibiotics because of her fingers, so any fever is cause for concern.

When the fever came back 8 hours later, I knew I had to call the doctor.

It’s always so tricky with Grace. You never quite know if she’s got a tissue infection breaking through and causing the fever or if it’s all attributable to the virus. As a general rule, when someone is on antibiotics and they get a fever, they need to be seen. I decided to call her infectious disease doctor, the one who prescribed the antibiotics, for advice.

At first, the MA who works for the ID doctor did not believe Grace needed to be seen, but decided to run it by the doctor anyway. The doctor recommended getting blood work done to check her infection markers and rule out tissue infection, and to check for viruses.

So, we spent the afternoon yesterday at the doctor’s office. Grace was in rare form; overheating plus worries about COVID plus fever caused her behavior to be—well, like a toddler throwing a tantrum. A bad one. The doctor was astounded. She’s never seen this from Grace. (Lucky for her!) We ended up talking about the mental health issues for quite a while, in addition to doing an ear exam (Grace’s favorite! Just kidding. She HATES them.) and checking her throat and lungs.

All this from ONE TIME at a park without a mask.

People like Grace are the reason people like me wear masks. I could have a virus and not know it. I could be contagious and feel healthy. So, in order to keep from breathing germs on others, I wear my mask. It’s a small price to pay to help others.

For those of you who refuse to wear masks, please—think of Gracie. She’s battling a fever right now, at this very moment, from some viral infection she picked up in a few minutes at a public park. No one else is sick, just her. She is the one whose immune system is compromised.

And for those of you who are able to send your kids to school and for whom the decision between their physical and mental health was a no-brainer, please remember how lucky you are that your children do not have compromised immune systems. Please remember that for some of us, every outing is a roll of the dice.

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Origins

Posted on September 12, 2020 by saussi77

I don’t remember how much of what happened last fall I posted here—not much, I think—but I’m sure I haven’t written about this yet. But, after my last post about how Grace has so much anxiety, it seemed fitting to write about how I came to find out that Grace was experiencing such severe mental health issues.

Last December, Grace was admitted to the hospital with four separate severe infections. The finger that had sent her to the hospital for almost a week in November had not improved, and she had added osteomyelitis in her right big toe, prepatellar bursitis in her left knee, and cellulitis in her left big toe. (That one was caused by a giant splinter, approximately 8mm x 2mm, that had lodged under her toenail. She couldn’t feel it.) Because she had been getting strong medications for so long for her left ring finger, she was admitted and received frequent doses of several strong antibiotics per IV. She slowly, slowly improved, but not enough to switch to oral meds. The only way she would be allowed to go home was with a PICC line (peripherally inserted central catheter, or IV that starts in her arm and ends in her heart).

To say that Grace was terrified of the PICC would be a gross understatement.

Given her history of nonchalance with IVs, we stressed to her that it was of utmost importance for her not to pull this one out and to keep it very, very clean, since it went straight to her heart. “It goes to my heart?!?!?!” was the response. She knew that any line infection would be immediately life-threatening, since it would automatically go to her heart and therefore her entire bloodstream.

Usually, PICCs are inserted on awake patients. There is no need for general anesthesia; most people are able to have them done with just a mild sedative. So, our plan for placing the PICC for Grace was to give her Versed (a short-acting sedative that causes the person to forget what happened) and have the PICC placed in her existing hospital bed.

Side note: I was worried about this plan, because her existing hospital bed was FILTHY. Bits of food and play doh and toys and every other kind of germ in the room had entered her bed. It seemed like placing the PICC on a dirty bed was just asking for problems for a kid who can’t fight bacterial infections.

Anyway, the time came to do the PICC. The child life specialist was there to help soothe Grace’s nerves. The nurse and doctor were there to administer the Versed and monitor things. When the PICC nurse came in with her ultrasound machine (they track the line as it goes in to make sure it does not infiltrate the vein and to make sure it correctly enters the heart), it was time to begin.

The first problem came when the nurse had a nasal spray bottle of Versed.

Grace hates having things put up her nose or in her ears. Those are two places where it’s extremely difficult to get her to cooperate; usually, she has to be held down for routine ear checks or nasal swabs. But Versed only comes in a nasal spray, apparently. Grace was terrified of the nasal spray. Eventually, because everyone was waiting and had other patients to see that day, several people held Grace down to administer the Versed.

Every other time she’s had Versed, and there have been quite a few, she has just acted drunk—loopy, out of it, but carefree. This time, though, was very different.

Grace had been thrashing and shouting, “NO, NO, NO!” as the Versed was administered. After it was done, we all let go of her, but she continued thrashing and shouting “NO!” It works quickly. She was thrashing so much that there was no way they could insert the PICC; that requires stillness. Eventually, it became clear that she was not going to calm down, and the PICC nurse and doctor and floor nurse left the room. The child life specialist and I stayed and continued trying to calm Grace down.

She was having a massive anxiety attack, but was too “drunk” to be reasoned with. She kept pushing her hands to her face and shouting, “No!,” even when there was no one in the room but me and Kara from child life. (Kara is an absolute angel, by the way. It takes a special kind of person to do child life and she is amazing.)

We kept trying to distract Grace and get her hands off her face. I pulled out my phone and started showing her pictures. “Who’s this?” I would ask, and she would pull her hands off her face long enough to look at the picture, then answer and put her hands back.

The true enormity of what we are dealing with became clear when I would show Grace pictures of herself. “Who’s this?” I asked, showing her a photo of herself in full makeup, looking absolutely gorgeous. “There’s no one in that photo. That’s just a picture of air. Nothing else.” Shocked, I said, “Gracie, that’s YOU,” to which she responded, “It’s nothing. That’s a picture of nothing. Just air.”

It happened again and again when I would show her pictures of herself. “Who’s this?” “Jackson.” “Elliot.” “Dad.” “Air.”

Before her Versed-induced anxiety attack, I knew things were getting bad with Grace, but I had no idea the extent of her low self-esteem. I had no idea she hated herself so much. It was a sad awakening for me.

At some point, Kara and I had a few moments alone in the hallway (maybe Grace fell asleep? I don’t remember). Kara and I discussed the urgency of Grace’s need for mental health help. She gave me some resources, including a referral an agency I could call to set up in-home mental health help for not only Grace but the rest of us, too. I think I called them from the hospital, or maybe once we got home.

(That particular agency only works with children on the Colorado Medicaid Children with Life-Limiting Illness Waiver. Getting Grace switched to the CLLI waiver is a whole post unto itself… the change finally went through about 2 weeks ago, after several months of trying. And now the agency isn’t accepting new patients. #Facepalm)

Anyway, Grace’s terrible Versed-induced anxiety attack was in December. It is now the following September and we still do not have good mental health help for Grace. I’ve asked my counselor friends and Gracie’s therapists for referrals, but for some reason none of them work out. It’s like there’s an invisible brick wall between us and help. I have no idea why. I firmly believe in the universe providing things when they’re needed and not a moment before, but it seems like this is really, really needed. Why isn’t it materializing?

Maybe, between this post and the previous one, something will happen now. I have gotten a couple more referrals in the past couple days, and will call them Monday. Keep sending those thoughts and prayers that something will happen!

My sweet girl has been through so, so much in her short 10 years. It’s no wonder she’s got PTSD from all the forced medical procedures, all the bedside surgeries with no anesthesia, all the doctors appointments and hospital stays and therapies and EVERYTHING. I hope we can help her get through this latest problem. She deserves all the goodness in the world.

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Hard Truth

Posted on September 10, 2020 by saussi77

I’ve been thinking about writing an honest post for a while. But honestly, everything is so depressing and hard that I haven’t really wanted to share our truth. And I don’t want or need anyone’s sympathy; life is hard for everyone these days and we will get through it no matter what.

I started this blog to write about life with Gracie, and the truth is that life with Gracie is incredibly hard these days. So here’s a little snapshot of everything we’re dealing with.

When Gracie was little, she used to be the most mentally healthy little kid ever. She was able to adapt to every situation with grace and laughter. When she was a baby and we put elbow splints on her to keep her hands out of her mouth, she would put her pacifier in front of her and bend down to pick it up with her mouth. She didn’t mind having to change, having to adapt. In fact, it was her greatest asset as a toddler.

Years of medically-induced trauma, years of being different physically, years of enduring taunts and hardships, have destroyed Gracie’s confidence. Instead of being a silly, gregarious, happy child, she is an anxious wreck. I believe she’s experiencing medically-induced PTSD and anxiety, and it is BAD. If I go to the bathroom, within seconds she’s yelling at the door, wondering if I’m still there. If I leave the house without her, she freaks out—she texts and calls from her iPad every few minutes, she cries and destroys things, she is a hot mess.

Our mature toddler has grown into an emotionally delayed 10-year-old. She hits and bites and pinches and screams when she doesn’t get her way. She throws fits when I ask her to do math, when I ask her to go to the bathroom, when I say I’m going to the grocery store, etc. She bites her fingers and blames me for it, defiantly asserting that she wouldn’t have bitten if I hadn’t left. She holds me hostage for everyday decisions.

I am trying my best, but feel like I’m failing her every single day.

Several times, I’ve tried to find mental health counselors for her. For a while, she had one, but the counselor was no match for Grace. Gracie is incredibly smart and expertly able to steer conversations away from difficult topics. The counselor did not even realize that Gracie was manipulating her, was expertly avoiding difficult subjects. That counselor was our only option, though. Everyone else I’ve called doesn’t take Grace’s insurance or isn’t accepting new clients.

In Grace’s mind, the problem is that she doesn’t have any friends. Her one good friend has her own issues, in many ways more severe than Grace’s. We have had the friend over several times this summer, but it’s never enough for Grace. She’s insatiable. This past weekend, she made friends with a girl her age from down the street. Instead of being happy to have a new friend, though, she bit her fingers even more severely than usual, explaining that it made her miss her other friend to find someone new.

Each finger bite is a low-key expression of suicidal ideation on Grace’s part. She knows what she’s doing when she bites. She knows that any infection could become life-threatening. Still, she bites. She takes bandages off the worst fingers and bites them again and again, until they’re bloody pulpy messes that would be down to the bone if the bones still existed. I bandage her fingers about three times a day these days—that’s three times as often as should be necessary, but she’s removing bandages every time I put them on. I find little dirty pieces of tape and dressing all over the house and yard.

I am out of ideas of how to help her. I know she needs counseling from a good counselor but can’t find one for her. I know she needs to make friends but with COVID, we’re not going anywhere and she’s not at school this year anyway (I’m homeschooling the big kids, which is a challenge in itself). I have tried to reason with her, tried to scold her, tried to hug her more, tried taking her iPad away, tried everything I can think of. Nothing is helping. If anything, she’s getting worse and worse.

And these are only the struggles we’re having with Grace. We’re having so many other struggles, too. Chad and I are having marital difficulties—although it’s better lately, we’ve spent much of the summer fighting, and it seems our differences are so fundamental as to be insurmountable. Jackson and Grace fight a lot, too. At least once a day, they scream at each other, usually when I’m trying to get Elliot to sleep. As I mentioned, I’m homeschooling the kids, which is nightmarish. One or the other of the kids defies me every single day, by which I mean refuses to do their work. Of course, the other is a perfect angel when one is throwing a tantrum. They take turns being the tyrant and the angel. I feel like I’m failing them, and my only saving grace is that they would probably be doing even worse with online learning (neither learned much last spring). But it would be someone else’s responsibility to make sure they learned things, not mine. Professional teachers really, REALLY earn their salaries.

Then, of course, there’s the reason they’re homeschooling in the first place. I lost my job this summer—really, I lost my career. There are basically no more opportunities for remote legal editors. I am having to reinvent myself at age 42 and it’s depressing as crap. I’m taking a class to become a CNA so that I can get paid for some of the tasks I help Gracie with daily. The class discusses things like to make sure to shower before a job interview, and not to bring children or friends with when you go to the interview. It’s unbelievably depressing to be back at square 1 after all these years, and to be so desperate for an income that I’ll gladly accept any work that comes my way. What’s even more depressing is that I’ll be making almost as much money as the grunt worker with no amount of education required as I made in a highly educated professional position.

I don’t want anyone’s sympathy, and I didn’t write this because I wanted to draw attention to our plight. Others are struggling, too; so many are in worse situations than us. The only help I’d request is if anyone knows of a good counselor for Grace, please send them our way. Or, you know, thoughts and prayers for a good counselor to materialize would be great, too. ❤

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Isolation

Posted on May 28, 2020 by saussi77

As schools across the country wind down for the summer, parents everywhere are lamenting their children’s loss of normalcy. Children and teachers alike are distraught that they were unable to say goodbye face-to-face, unable to hug their friends as they bid farewell for the summer, unable even to clean out their own desks or classrooms.

We get it, really we do.

Grace’s disease affects her ability to fight off infections. In particular, her B-lymphocyte cells are extremely low, meaning that she lacks the kind of cells that are specifically designed to fight bacterial infections. It’s obvious to anyone around her that she’s prone to infections; brief moments of contact with dirt or the outside world can turn into hospitalizations practically overnight.

Her T-lymphocyte cells, the ones that fight viruses, are not compromised; in fact, she seems to get fewer viruses than many kids. But when she gets them, it takes her longer to recover. That’s in line with her slow healing ability in general. Broken bones heal slowly, cuts heal slowly, and she heals from viruses slowly. Most people don’t know that she is not immunocompromised in regards to viruses; they see how quickly she gets infections and understandably assume that she is prone to any illness.

Because of Grace’s apparent immunodeficiency, people are taking extra precautions around us during this COVID-insanity. Chad and I definitely appreciate the concern of our friends, but Grace is less appreciative of the consideration. She is an extremely social person, and the lack of in-person interactions is driving her crazy. She needs people. She needs to talk and talk and talk, to play and have fun and interact. This isolation is so tough for her.

Last weekend, Jackson was able to spend some time with his BFF. It was absolutely rejuvenating for him—he was visibly more relaxed after interacting with a friend. Grace, however, has not had that opportunity. We don’t even know how to contact her BFF; it was difficult to connect even before the pandemic, and now it’s basically impossible. Grace has no one. She’s so lonely.

We go through many periods of time where we are isolated, where we stay away from schools and other people in order to keep Grace from getting sicker. Those are easier for her to stomach, partly because she’s usually quite sick and lacks the energy to do much playing. But this unprecedented time of quarantine and isolation is too much for her. She’s a kid with little impulse control, little regard for consequences. All she knows is she wants to play with a friend RIGHT NOW. And she has no one.

People all over the country—all over the world, really—are going through this at the same time as us. People all over the country are feeling the pinch of isolation. People all over the country are sad and lonely. People all over the country are suffering.

But in our house, there’s one person in particular who is feeling worse than the rest of us. She’s so lonely. To her, this prolonged isolation is just one more symptom of her differences. One more way in which she’s far from normal. One more way that she can’t be like others.

Eventually, the isolation will end. No one knows if it will be weeks, months, or years. No one knows what the world will look like once we all reintegrate into society. No one knows how many people will be lost; today, our country reached the grim milestone of 100,000 dead. But most people will recover. Most people will rejoin society, reunite with their friends, reestablish the connections that are so dearly missed.

I hope that someday, Grace will be able to, too. I hope that someday, her piercing loneliness will end.

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A Vision of the Future

Posted on May 19, 2020 by saussi77

When Gracie was younger, she would bristle at being called “blind.” She would adamantly reject the term, saying instead that she could see just fine. Although she was born with only about 10% of normal vision, it was all she’d ever known, so to her it was normal.

Now, though, she knows her vision is terrible. It has worsened significantly over the past couple of years, and even she can no longer deny that she’s mostly blind. It’s a source of angst for us all.

Lately, Grace has had a wandering eye. It’s disconcerting; we will be talking to her and her eyes will be pointing in different directions. She, of course, does not realize this is happening, but to us, it’s an unmistakable reminder of how bad her vision truly is. A few days ago, I suddenly realized that it’s always the same eye that wanders—her right eye. She was in the bath at the time, and I was talking to her and watching her eye drift over my shoulder. I covered her “good” eye and asked what she could see.

She has almost no vision in the “bad” eye.

I was close enough to be covering her “good” eye with my hand, but she said she couldn’t see my face properly—it was just a blur. She could tell where my hair was because it was dark, but that too was blurry.

We’ve always known that Grace’s eye disease is progressive and would likely cause her to become completely blind. But thinking about an uncertain future is completely different than witnessing it firsthand. It’s heart-wrenching. How can we stop this? What can we do? How can we make her okay?

We can’t. There’s nothing we can do. It’s the worst feeling.

What I wouldn’t give to have her see the world with full vision! What I wouldn’t do to let her see the vibrance of colors, the beautiful details of faces and flowers, the wonder of watching words on a page transform into whole new worlds.

But I can’t. There’s nothing I can do. I can’t help her; I can’t give her vision, no matter how much I want to.

Just like any parent, I want to be able to kiss the boo-boos and make the ouchies go away. But I can’t make this go away. Nothing I can do will prevent her vision from deteriorating and eventually disappearing entirely. It makes me so sad to think of all the things she won’t ever see—Elliot’s face when he’s grown up, for example, or her own babies’ sweet faces when she becomes a mom.

Parenting any child comes with a thousand heartaches. Parenting Gracie is no different. But the thousand heartaches are a lot different.

Just like any parent, I want my children to grow up to be responsible, caring, happy adults. I want them to dream big and work hard to make those dreams come true. I want them to have every opportunity, to do anything they want, to become good people in their own rights. Technically, I suppose all of that is still possible for Grace, regardless of her vision or lack thereof. It just might look a little different for her.

Eventually, this heartache will fade and we will adjust to the newest version of the new normal. But for now, it stings. Our poor sweet girl goes through so much.

I just wish I could make it better for her.

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Attrition

Posted on May 16, 2020 by saussi77

The fall of 2019 was a difficult time. In late August, Grace came home from school one day with a red and swollen thumb. Due to the redness and heat, we started her on antibiotics, but the thumb didn’t improve. After three days of antibiotics, she was able to get in with her regular ortho doctor. Turns out it was a displaced fracture, not an infection—antibiotics don’t do much for fractures. However, the x-ray showed something much more alarming.

Almost all of Grace’s distal phalanx bones had dissolved. Infection had won the war of attrition against her bones.

In a normal hand x-ray, each distal phalanx is a few millimeters long. It’s a skinny bone with an angled tip and a slightly wider base. In Grace’s hand x-rays, there was just a base with a nub. Nothing else. The entire top part of the bone had dissolved in almost all of her fingers. It was far more horrifying than the displaced fracture in the thumb.

Grace’s infectious disease doctor decided to treat the chronic osteomyelitis that had dissolved the bones with long-term antibiotics, and so Grace continued taking Keflex even after the thumb was determined to be a fracture.

Sometime in September or October, Grace developed a wound on her left ring finger that didn’t look right to me. It was too red—very infected-looking—and she would get blisters occasionally for no apparent reason. Every time we followed up with infectious disease and ortho, I would show them the finger, but because she was already on antibiotics, nothing further was done.

By early November, she developed a mystery fever and the finger looked redder and felt hotter, so we went to the ER. The finger was only red and hot at the tip when we got there, but a streak had developed on her hand by the time we left. She was not admitted that first day at the ER, but when we bounced back the following day, they sent her upstairs. She spent about 5 days inpatient that time. When she was discharged, she had a few days of mild improvement, or at least not worsening, but she was so pale. So, so pale.

About a week later, she developed a streak in a toe that we’d been battling since July, and her opposite knee became red and hot. Those streaks developed on a Saturday night that happened to be my birthday. Or maybe there was no coincidence; we had friends over that night, and perhaps it was too much excitement. She was still ghost-white, an outward sign of her internal battle. Anyway, it was late when we saw the streaking, and we decided to wait until our already scheduled Monday appointment instead of going back to the hospital.

Grace didn’t really improve throughout the month of November, and I kept her home from school all month. She looked so sick; she was deathly pale and had no energy. She cried and moaned about being kept home, but I was worried that if I sent her to school, she would worsen. Finally, on the first school day in December, I allowed her to go back to school—it seemed like she may never improve, and she had already missed all but one day in November. The next day, she had a streak in the opposite toe—her fourth major infection at the same time. That was the last straw. We went back to the ER.

That time, she stayed in the hospital for an entire week. She came home with a new accessory, a long-term IV called a PICC line so that she could get IV antibiotics at home for the next several weeks. She got her PICC line out on Christmas Eve, just in time to see Santa parading down our street, which was great because we’d missed our scheduled Pictures with Santa event while she was in the hospital.

Grace still looks a little pale to me from time to time, but not the deathly white she was throughout November. She had a hard time recovering from the virus she had the entire month of March (it might have been COVID-19), and her bones have dissolved a little more since last fall. She is not entirely out of the woods and she may never be the same. There will be lasting consequences of that illness; not just physical but also psychological. (More on that later! That’s a post unto itself.)

I learned some lessons from the sickness of last fall. Probably the most important one, to me, is that we must live life while we can. We are not guaranteed anything but this moment. Grace could have died last fall—she had a few very scary days where I wondered if she would make it through. No matter how tough it is to parent her, it is a blessing to do so. She’s amazing and sweet and beautiful and loving and kind. I am so grateful to have the chance to be with her, every single day.

Love you, Amazing Gracie. ❤

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