2020, April 1: Day 4 of fever but feeling better

I have a Covid-19 Quarantine tale to tell. I felt more tired than normal for about a week and half or so before this past weekend. I said to myself, “But who isn’t, right?” Nothing is normal. I knew I was having a trauma response in some ways to the situation. James got hurt. I was in caregiver mode. My people needed me. I am good at taking care of everyone. I’m taking of me too. I’m okay. And did we have enough groceries? Was I protecting the kids well enough? Would I be able to pay bills? So, I was tired. Then, Friday March 27, in the afternoon, I cleaned our house from top to bottom, disinfecting everything. It was spotless. Laundry all washed. Floors clean. We were ready to really really settle in and ride this thing out. I started wheezing. I have asthma. I used my inhaler. It didn’t seem to help. Saturday I seemed okay mostly, still wheezing though. A heaviness was settling in my chest. Hmmm. No, don’t think of that, it can’t be that. I took some Sudafed- my throat seemed mucous-y too. Went to bed 10p.m.-ish. Felt the hint of a headache coming on. I slept restlessly. Sunday, 5 a.m., I awoke with the worst headache I have ever had I believe. It intensified throughout the day. At 1 p.m. I took my temperature. I didn’t think I felt warm really. Oh. It was 103.1. The headache held on for 27 hours. Going down into my neck and shoulder. I felt weak. Fatigued. Stomach felt strange. Slightly nauseous. But I was hungry!My temperature fluctuated all day. Monday March 30, morning I called my family physician. He called back on a telemedicine video call. He referred me to a respiratory therapist an hour away to be examined further and my lungs checked. The receptionist made my appointment. I drove myself there. My car was the only one in the front lot there. It was an urgent care/ physicians’ offices building. The sliding doors were locked. The building was closed. Appointments only. A guard let me in. I had a mask and gloves on already. I was directed to sit in 1 of the only 3 available chairs in the waiting area after I stood behind the yellow tape 6 feet away from the appointment scheduled behind the counter. I was told to not touch anything. Everything is very lonely about this time in our lives right now. The nurses and techs and respiratory therapist were covered from head to toe, no skin showing, face shields. The first nurse was very nervous. My heart went out to her. To all of them. To all of those on the front lines. And, here, I was in the middle of it. How did I get here? First, after an exam and a few questions (they already had my records in their system- there wasn’t much to ask) I was tested for Influenza A and Influenza B. 15 minutes passed. Those were negative. I was then tested for Covid-19 because I am at a higher risk because of asthma and I work in a school. Great news was that my lungs sounded clear, and have good airflow. I was prescribed prescription strength Tylenol and told to take 1000 mg as needed. My headache was coming back, and this sounded good to me. She said it wouldn’t hurt for me to take some antibiotics, so she prescribed a Z-Pak, on the off chance it is something bacterial, or if it was bronchopneumonia, which is bacterial, caused by a virus. I was scolded for touching a door with my gloved hand. All reasonable and necessary and understandable, but still so surreal. I was told it would be 3 to 5 days before I got a call with a result. The doctor said to go on as if I have Covid and continue to be cautious. Quarantine quarantine quarantine! Call if I’m having trouble breathing. Tuesday, March 31st headache came and went, body temperature fluctuated throughout the day from 99-100. Wednesday, April 1, woke up. This was my 3rd night of fever dream sleep. My covers were a tangled mess, half on the floor this morning. Headache again. I got the call from the respiratory therapist’s nurse! I am surprised it came so quickly. She started to say, “Your test was posit-,” then corrected herself, saying ‘negative.’ Whew, right? She did say that it’s quite possible it’s a false negative, and I still must take precautions and quarantine myself for an additional 14 days. Call if I’m in respiratory distress. It was explained to me by a loved one more knowledgeable than I that this means that there is that possibility that there wasn’t enough of the virus to have raised the level of antibodies to the testable threshold. I researched this in a science journal, and this explanation was echoed. So I will continue to quarantine myself the best I can with 2 kids in the house. I wear my mask when I’m close to them. Everything is disinfected multiple times a day. We wash our hands a lot. I try not to breathe on people. Oh, yeah, my sense of smell is partially gone, just in the left nostril. Today my temperature has been 99, 100, 101.7, and 99.7. I got a little bit of fresh air outside. I watched a cardinal, a mourning dove, a finch, and 3 robins hop about, mingling while eating the seed and bread crumbs. I am feeling better, more like myself, this evening. I made supper without getting winded. My legs didn’t feel like lead.
Before I got sick with the symptoms, I adjusted to the situation quietly. Alternatively crying (Was I sad, scared, thankful? It was all of that.) and being irritable, then jolly, all the while taking care of everyone around me. All of my loves. I was doing my best to take care of me. I thought I was handling it okay. The crying spells were difficult. Maybe hard for James to watch me sniffle and snort and weep while he told me stories and jokes. I had no control over the crying. I said, “Just roll with it. Keep talking. This is who I am now.” He would kiss me. Rub my shoulder, my arm.
Please, stay out of the stores unless you really need something. Only 1 person needs to go. Sanitize. Wear a mask.
I cannot wait for warmer days. It will help us all here in this house for sure. Just being outside more.
I am scared of everything happening. But also I am thankful for the slow-down. Thankful I don’t have to rush anywhere. Thankful I have my children right here. Sending out prayers to the universe that they don’t get sick.
I do anticipate the days when the sick are no longer sick. The hospital beds start to empty- because the patients have GONE HOME! How we will rejoice!
There is so much GOOD if you just look around. So much kindness. #covid19 #quarantine2020 #mystory #possiblefalsenegative? #whoknows #everylittlethinggonnabealright

the way she loves

Just thinking...
I have one child who tells me he loves me approximately 42 times per day, every day. He hugs me, rests his head on me, loves when I cuddle him and dance with him. 🥰
My other child does not like to be hugged by me, does not say I Love You. When I say I Love You, she responds with, “Okay.” When I hug her, I ask first; she will shrug her shoulders. She is stiff, uncomfortable. She just wants to describe in great detail the saga of Flash, or tell me again how many rings a planet has. I am bothering her. I can count on one hand the number of times she has hugged me on her own and said the words I Love You in the almost fifteen years since she was born.
When we started learning sign language, I came up with a solution that works for us:
🤟🏻.

She will use the sign for I Love You if I ask her.
I don’t know if she understands why it’s important to me, or if she even actually cares. But it means the world to me.
💗
I am thankful for this.
And so thankful for both my babies.

you are loved

I drove past my dad when I was in town today. I called him, and I asked, “ Was that you?” Yes. My voice broke, cracked. He said,”Meet me for coffee.” So I did. I needed my dad today. I just didn’t know it. Turns out he needed me too. It did wonders talking to him. We talked for an hour and a half.

Emma got invited to a sleepover this upcoming Friday. She is sooo excited about it. We were discussing it this evening. Then she HUGGED me. She hugged me HARD. She said,” Thank you for everything,mom. I can tell by your eyes you’ve had a rough day.” She squeezed tighter. I cried. Sobbed actually, my body shaking. She then said, “I love you, mom.” I cried louder.

her world is magical

To be Emma is to live most of the time in a MAGICAL world we cannot see. Can you imagine? Living in a place where you can so easily picture yourself on a distant planet? Where music 🎶 makes you so happy you can FEEL it, rocking and smiling and making joyful noises? Where all around you, you have beckoned faeries and pixies, Sasquatch, aliens and droids, pop stars and glitter, long-gone heavy metal 🤘 rockers bringing down the place with kick drum vibrato you can feel in your bones? A place where Chinese love songs make you light up, your heart flutters?
In this beautiful world you see, and it is NOT ugly, people are to be spoken to. Everyone has a story. You just have to tell them you have noticed them. “You have blue hair.” “I like hot sauce.” “How is salsa made?” “How do prescriptions get in glasses?” “You speak Spanish.” Nearly everyone you inquire opens up to you.
That’s what Emma’s world is like. She doesn’t live in a small world. She isn’t simple-minded. She doesn’t feel sorry for herself.
She lives in a magnificent universe (in a plethora of multiverses.) Questions are to be pondered, spoken aloud, then pondered some more. Everything is full of WONDER.
🦄🦄🦄🦄🦄

I don’t live in her magical realm. Sometimes her questions and topics of conversation are tiring. I answer some. We ask Siri others. The day ends. A new one begins. She asks the questions again.
When I get weary, I have to step back and breathe, take time for myself. Then I emerge from my cocoon of literal blankets, and I can see my daughter with new eyes. I gain fresh perspective all the time. I touch her beautiful face and stroke her soft curls and whisper, “I love you.” She laughs if I tickle her cheek. She does not hug back or say she loves me. Sometimes in Han Solo fashion, she’ll mutter an, “I know.” If I sign “I love you “ with my hand she will return the gesture. ❤️

Just checking

Insight:
I have a teenager. Not a “typical” one. She is quirky, is on the autism spectrum, and has a movement disorder and epilepsy. She’s also thoughtful, chatty, beautiful, and so intelligent. Everything she does she does much slower than most of is. She requires PATIENCE.
At the risk of over sharing, I just want to give you an idea about something here. ... I want to give her independence. I teach and encourage her daily to do things on her own. ...
Public restrooms. It depends on where we are. What kind of setting. A huge venue or a restaurant that’s not too busy. Do I let her go alone? Today it was just the two of us in a restaurant that had quieted just after the lunch rush. I showed her where the restroom was and showed her how to get back to our table. You have to show her the “signs” to get back, like breadcrumbs. This door here by the lights. Look straight ahead then look up. You’ll see the fans on the ceiling. That’s where our table is.
Well, she was taking forever. And ever. I had a good view of the hall to the restrooms. Could see who was coming and going. The longer she took and the more women (and men) I saw head that way made me nervous. I know she’ll often stand in someone’s way and stare. She’ll rock forward, bent at the waist. Rocking and making throaty noises. And she won’t move. Or she’ll comment on observations she’s made about someone. To them. Loudly.
I checked on her once.
Then again.
She was fine. Just taking longer because her belly hurt some.
She made her way back shortly after I checked on her the second time.
The server was kind. He sensed my worry. He brought Emma some fresh cookies when we were about to go. Emma had enjoyed talking with him about his blue hair. She wanted to tip him personally, which I thought was touching and thoughtful. She wanted to say Thank You. I obliged of course. I explained how much we should tip and sometimes a kind server should get a little extra.

Granted, I will not let her go in a restroom alone in a stadium or even in some Walmarts! And sometimes she NEEDS me to go in the stall WITH her. I have never received a dirty look or an odd look for going in with her. I think most women in public restrooms have been pretty understanding of our situation. If I DID ever get a look or hear a comment, you know ME! Whatever comes out of my mouth will be quick and sharp and cut right through the person! 😂
But days like today, I let go of her hand, and I give her space and freedom and the tools to be independent. ... and I watch that bathroom door like a hawk and keep checking on her! 😂❤️💪

Morning coffee

Morning coffee and candlelight. Not quite ready for the sun shining yet. I need this quiet. I’ve been flailing, faultering <——— not a word apparently. September comes and a terrible grayness with it. Every year, like clockwork. My thoughts are muddled. I can not do the things that need to be done. Yet, I stay busy. Business keeps the darkness at bay. I stay so busy I collapse onto the bed at the end of each day. And I realize I’ve only been talking to the voice inside my head all day, and it’s lonely in there. I don’t know how to ask for help with things I need done, so my list grows longer. Panic sets in. Busy me still can’t seem to check much off the list. I am not sad. This isn’t sadness. This is accumulation of all the emotions I have felt every single Autumn since I was a child. The leaves would fall, and I did not delight in them. I cried when the skies turned gray. I was so young, but I remember thinking “I don’t belong here when it’s not sunny and warm.” This is remembering when mom got the call it was cancer. This is remembering her pain. This is remembering my last weeks of pregnancy with Noah, driving myself to OB/GYN appointments in Washington State. I can still SEE in my mind how the sky looked, and the trees. I can still FEEL the air. I remember having a little girl at home, and no one could tell me what was “wrong.” Please stop telling me it’s nothing- I’m tired of being on all these waitlists for specialists. I feel so alone. And then he came early, and I was terrified. This is the little girl inside of me who still hears the words “You are a lazy child. “ “Why don’t you go outside and play?” “Why are you different from the other kids?” “She doesn’t have much common sense, does she? Book-smart though.” I don’t dwell on the past. But that sticks with me. I recognized just a few short years my need to do EVERYTHING and do it right stems from that. Because I didn’t do ENOUGH then, I must do it ALL now. Self-care isn’t just getting my hair blown out or a gel manicure; it’s taking care of the little girl inside of me who has grown into the woman I am today. I am still learning how to do that. Some days I just want to REST. I want to do NOTHING. But I am fearful someone will find me like that, and I will be deemed lazy again. I also fear that if I enjoy resting, I won’t want to get up, and I don’t want to fall into a deep depression. I like who I am. I didn’t fall in love with me though until about two years ago. Yes, I hadn’t really loved myself since I was five. I love me. I pride myself on “getting shit done.” “I can handle it. Let me take care of it.” Then I feel a little crack. The plates shift a smidge, and my carefully arranged self breaks a little. This is a vulnerable post. Letting people see. This isn’t about “oh the sun will come out tomorrow.” This is about “I am not sad. I see the sun now. I love each and every day. I have not much to complain about really. But, I am human, and I am flawed, and sometimes I am fragile. I am strong. But I have been weak. I am kind. But I have been unbearable with a sharp tongue before. I know how to do things and get things done, yes. But I have been that child who lived in her own world and obsessed over my dollhouse and couldn’t cut my food or tie my shoes or climb. 🤔 Hmmmm. Much like a child on the spectrum. I am a mother, a lover, a friend. I am a creative person. I like me. This. Is. Me.”




Note** I never cared for Fall. Until I met James. He’s showed me the beauty in it. I am joyful when we watch football and truly rejoice in picking a pumpkin.

Mermaids and Tom Petty

There was a time, a long long long time ago, in a different life it almost seems, that Emma screamed. Baths were the worst. I’d like to say I was always calm and didn’t lose my temper, but that is not true. I am human, and it took me many years to learn self-restraint myself and to stay calm when I was on the edge. Anyway, baths. She screamed and would not get in. When I was finally able to get her in, she’d be fine until it was time to rinse her hair. She was 4. Every evening was a struggle.
I used her love of mermaids to my advantage. “Pretend you’re a mermaid, Emmy. Lie back in the water and float. So she did, happily. The shampoo and conditioner would come out in the bath water as I gently worked my fingers through her hair.
Then, came her own rigid routine she insisted on. After the bath, she had to be dressed in her jammies- either a long nightgown or a 2 piece set. I had to read or tell the exact same story(ies) every night. Then, it was imperative she change out of the clean pajamas and into one of her many princess dresses. And that’s how she slept.
Oh, I remember getting angry. Trying to force her back into pajamas. I remember being exasperated that she wouldn’t fall asleep.
I didn’t yet have the wisdom to appreciate those moments. I was still learning. And I had a 1 1/2 year old who really, really disliked sleeping. I was lucky my girl who didn’t want to fall asleep stayed asleep almost every night for 12 hours. And she took long naps.
Fast forward a couple of years later- rinsing her hair was easier. But now, at age 6, she would laugh uncontrollably as she splashed and sloshed the water out of the tub, flooding the bathroom.
I remember wondering if she would always do that. I remember being angry. I remember not realizing that she was in her own world- in the ocean, swimming, being a mermaid 🧜🏻‍♀️. My world and my rules weren’t always relevant. I was a tired momma, all alone, hating that I had to go back to work, hating the situation I was in, sad, bitter, desolate.

So, as I think of the lyrics to Tom Petty’s “Square One,” I think of how it DID take a long time to get back here. I’ve been on a journey with her this whole time. Oh, we’ve grown so much.
I’d change a lot. If I could go back. But I cannot go back. I can only learn and move forward.
I look back now, and I think, I DID pay attention. I knew I could use her love of mermaids. I did encourage her to be herself. I got her all sorts of dresses and costumes at the thrift stores and made some myself. I DID recognize her strengths and built on them.
I am my own worst critic. That voice of mine inside my head is a huge bummer. I don’t know why she hates me sometimes.
#autism #epilepsy #autismmom #loveourlife #lifeisajourney