do it yourself kinda girl

A different Sunday

2020-04-05T11:44:00.000-04:00

April 5, 2020 Sunday
This is the first time I’ve taken my temperature since last Sunday, and the reading has been below 99°. It started out at 103.3°. 11:30 a.m. today, and it reads 98.9.
My normal average temp range is 97.2° - 97.6°.
Here’s to looking forward, and positively at that.

Getting there!!

2020-04-03T12:36:00.003-04:00

Friday, April 3, 2020.
Fever was down to 99.0° at 9 a.m. At noon, it is 100.1°. So, it’s low, but still nagging. Fortunately TODAY my body feels sooooo much better than it has. It doesn’t feel heavy nor fatigued. I still have some congestion. Not much wheezing. Feels a bit like a cold right now. I was enjoying my face feeling cooler since yesterday afternoon, but now my cheeks are flushed and hot again. The kids and I spent some time in the backyard yesterday and breathed in the fresh air. I even joined in on some corn hole for a little bit of exercise.
Noah was getting down yesterday, as it was just really hitting him how he may not have the summer he’s been dreaming of with his friends. I don’t have a timeline for him, not one that’s concrete. And not one that won’t scare him. Fortunately he has his friends to talk to on his headset every day.
I reached out to an Unschooling Special Needs Facebook group I belong to, asking the moms if their kids would like to either FaceTime, write letters (pen pals), or game with Emma. I had a huge huge huge response! So many others who are in our same situation, with their kiddos who are isolated right now and don’t have the same social norms as neurotypical teens. Eureeka! I feel like I have struck gold. Emma is so happy about it. We have a FaceTime call tonight with a mom and daughter who reside in southern Oregon!!

#covid19 #negative #falsenegative #assumeyouhaveit #justquarantineokay #everylittlethinggonnabealright

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

2020-04-01T21:33:00.001-04:00

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

2019-06-17T08:37:00.003-04:00

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

2019-01-02T18:18:00.000-05:00

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

2018-12-05T10:47:00.003-05:00

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

2018-12-04T16:11:00.001-05:00

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

2018-09-28T10:15:00.003-04:00

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

2018-08-07T00:11:00.001-04:00

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

Life School- you do you, we’ll do us

2018-06-24T00:35:00.003-04:00

It’s a personal decision. One I’ve thought long and hard about. I’ve discussed it with her father; in the end it’s ME who is responsible for her education. It’s me who will be her teacher and guide.
We aren’t quitters. We’re not “quitting” school. No, we’re moving her schooling to home- and to wherever we may find ourselves on any given day. I have been researching and teaching her since she was born. It only seems natural.
I have fought and fought to get her the best and most appropriate education in a public school setting. There are a LOT of things that need to change for kids who have special needs who are in a General Education classroom setting. A LOT!

My thoughts were:
Do I keep fighting and fighting, having meeting after meeting?
If so, then I continue to watch my daughter unravel. I saw her in tears nearly every school morning, pleading with me to let her stay home. “I want to be home, Mom. I want to be with you.” I saw her biting her fingernails to the quick, raw and bloody daily.
What I no longer saw, or heard, was my girl talking. Rarely she did.

As the school year came to an end, I began to discuss with her what homeschooling would mean for us. I swear I quite literally saw the weight lift from her shoulders. I heard her let out her breath. I saw her smile. She began to have conversations with me! That, to me, all of that, is worth EVERYTHING.

Her anxiety is diminished. So has mine.
I can FOCUS now on her curriculum, on putting together materials needed. We have been discussing the essay she will start on in August. She is actually excited about it. I can also focus on her brother more- give him the attention he needs as well.

It won’t always be easy and great. What is really? I am aware of this.

Emma has good days. Emma has really bad days. Now, on those bad days I don’t have to force her to go to a place that stresses her out. My daughter’s mental health is important. Mine is too.

We’ve shed too many tears and wished for something different too often over the last two years. I’m done trying to explain to my girl why she HAS to go to public school when I don’t even believe it myself.

I have nothing against public education. My son will still attend because he WANTS it. He likes school for the most part. He doesn’t have trouble with it.

How will I do it all?
Um, do you know what all I’ve been doing for almost 14 years? A lot. I’m exhausted. All the time. But I find a way. We just DO.

I am overjoyed and RELIEVED that I get to have her with me. She can finally learn at her own pace! That means that she is going to fly through some subjects, and others we will take as long as we need until she understands. There is no deadline for her now.

Technically she still has an IEP with Indiana State public schools. This will ensure that if I need any resources, or if Emma needs transition to college help, we will have it.

I don’t know all there is to know. I continue to learn and discover every day.

I am the mom who ENJOYS her kids. I love Summer vacation and Winter break. I love having them here.
Sure, they drive me batshit crazy sometimes. Sometimes they talk incessantly about their interests until my brain cannot take it anymore. (I am thankful for adult friendships!) Sometimes Emma whines and argues, and she and I are snippy with one another. Mostly though, we are all 3 incredibly laid back people. Our house is generally quiet. Unless Emma is blasting Sounds That Planets Make*, Trap Music on a Continuous Loop for Seventeen Hours*, NFL Theme Songs from Every Game Since 1983*. We like it this way.

I know I don’t have to explain myself to anyone, but you know me. I like to write. I HAVE to write. If I don’t write, the words play over and over in my head and try to eat me alive. Truth.

*not actual YouTube video or Netflix show titles 😂

why she’s so tired

2018-02-15T08:26:00.001-05:00

Another look into our lives:

I swear if I get another phone call asking me WHY is Emma so tired? And implying her schedule is off, and it’s my fault...
How many times must I remind those in education that my daughter is a hormonal teenager who deals with her autism, and sensory processing issues, anxiety, abnormal focal discharges (and sometimes actual seizures)coming from her occipital lobe (minimized by medication,) oh! and the medication causes sleepiness and makes her hungry All The Time... ****but we DEFINITELY pick her eating a lot😁😁😁 over the debilitating side effects of medications they had her on just a year ago, that caused her to lose 25 pounds (at 12 years old then,) her hair to fall out in clumps, her verbal skills were almost nonexistent, she hallucinated, she began to wander and we had to install Home Security, she regressed to 2 year old behavior, until she could not get out of bed (her brain became inflamed and swelled,) and her gait actually changed (this is why she walks “oddly “ now, and she does physical therapy in addition to occupational and speech language.) Her changed gait, and how she distributes her weight now on the insides of her feet, have caused her joint pain. ... And before all the medications, she was having literally hundreds of seizures per day, and she has much memory loss of that time.

So, PSA, our girl is a WARRIOR. We don’t make excuses for her. And we celebrate every time she progresses.
My biggest concern is not that she be an honor student- not at this time.
My fight is for her to have school days (and days in general) that don’t end in biting her nails bloody and rocking violently.

My daughter is brilliant. Her mind amazes me. But I know she will not reach her potential if she is stressed every day.

She’s going to go places. For sure. But we need to remind ourselves of how to best support her and what kind of teaching she responds well to. Not just at school, but at home too. I am ALWAYS reading up on real- life autism and epilepsy stories and doing my own research. Because I NEVER know it all. I’m always learning.

** She hasn’t felt well this week. Started out with one thing, and now it’s something else.
Sometime she can tell me a symptom or two, but I have to do detective work and figure it out!
She told me Monday night finally after being “off” all day what was actually wrong, and she was in tears. She said she “didn’t know what to do,” “ didn’t know what words to use,” and she had not been able to tell me. We have a good pediatrician who is able to help over the phone and in office as well. (Even though I did get mad at the receptionist this week 😂😂)

^^ She is fine, by the way, or will be soon. 😁💕

** We’ve got good people around us, who support us and love us, who encourage and help her learn new skills (all kinds of skills she needs!) I am so grateful.

Posts like these are my way of giving others a glimpse into our lives, and to provide awareness.
We are never asking for sympathy.
A little empathy and understanding goes a long way though. ❤️

#autism
#epilepsy #focaldischarges #sensoryprocessing #ongoingtherapy #occupationaltherapy #physicaltherapy #speechlanguagepathology #warrior #mygirl #educateoureducators

a day of reflection

2017-12-30T16:00:00.001-05:00

As this year comes to an end I think of how my mind has quieted.
I think of how restless I was one year ago. How my anxiety was at an all time high. I went through the longest running manic episode that I’ve ever been on. It spanned several months of the year before into this current year. I had to recognize that before I could work on it. I think of the harm I did to my beautiful inner-self. I think of how I did all that so well, unable to stop myself. I remember how unwell I was, how I had caused this by avoiding my own issues for far too long. How grief and sadness and shock can tear a person down, and how one has to eventually come to terms.
I think of how I began to come out of and quite actually come into my own. How lovely it was to recognize myself for exactly who I am. To Love myself wholly and see my self-worth.
Yes, I think of how my mind has quieted. How I’ve grown. Yes, forty year olds grow. We’re all growing and learning every single day. I’ve noticed how I take information in now- I mull things over. I tend to not spout out a response so quickly these days. I find I am more careful of others’ feelings. I Let Go of all things in The Past. Those things don’t belong Here- in The Now.
I met someone this year. I can’t believe how quickly time flies! Yet, we both feel we’ve known each other for ages. I am grateful for someone who is so very much my best friend, a true partner in shenanigans.
I turned forty one this year. I admit, I was sad to leave Club Forty, but my Love made this birthday the best I have ever had as an adult. The same goes for Christmas. He just knows. He just does.
I think of Emma’s struggles this year and how they become mine as well. I gather strength daily so we may tackle these issues.
I think of how this is most likely the last year Noah eagerly anticipates Santa’s arrival. I can only hope that he holds onto the Magic of Christmas as I have.
I have no regrets really- there is no point in that.
This year is different. I don’t look back on all the moments with sadness. Instead I fondly remember all the sweetest, funniest, most amazing days we’ve had.
I look forward to all the many new moments we will have, new experiences, memories that we’ll keep forever with us.

station wagon (stop breathing on me)

2017-11-27T14:53:00.001-05:00

we lay in the back of that station wagon
faux wood grain panels
dekalb advertised on the side doors
you and I lived a farm life but never embraced it

we saw our lives, past and future, rushing by,
in the sky above
we knew where we were by the power lines and treetops, counted the turns

in our own world, we did our best to block out all things grownup
back when you were my best friend
back when you’d irritate me and i’d yell,
perfecting my stage cry

I told stories, weaving tall tales, so i could share with you the places i went inside my head to escape all that we knew

you made me laugh until there was no sound and my body shook (rumbling, you said)
your jokes were the best

you told me you could fly in your dreams,
and i’d never been more jealous of anyone

you wound your stomper wheels around my hair, tangles and knots and tears

a rare mcD’s hamburger and those beautiful bestest salty fries

we screamed, we cried
we laughed
we spoke our secret language

brother sister sworn enemies

brother sister clinging to each other

-april charisse

It's me who makes the monsters

2017-08-02T16:59:00.002-04:00

Always a work in progress, I am.

As Emma goes into her teen years (and after a year and a half of regression due to seizure medication- then getting back to good), I am constantly relearning her autism. With hormones thrown into the mix, her days are often a mess of emotions and meltdowns.

Its easy to become frustrated with her. I beat myself up. I tell myself I can do better. I will be better. For her.

She's come a long way. So have I. I am not the same person I was some thirteen years ago, or even five. We are constantly evolving and growing. Some days we are stagnate. Other days she goes back a few steps, and I stumble and am hard on myself and depression sets in because I feel like I've let her down.

Every day I am learning. I strive to be better for both of my children.
I do know that our home is happy. I am happy. The happiest I've been in years. My children are happy and are both healthy.
I am grateful.

i don't do church

2017-03-04T00:11:00.002-05:00

I don't do church. A Christian God doesn't suit me. My spirituality lies in my heart, stems from all that is around me. I find Spirit in music, birds chirping and chatting, the wind tumbling my hair, in sun and warmth, the sound of waves crashing and sea gulls gossiping.
My soul is beyond tired. I am weary, a little lost.
I told Amanda that- "I am tired. My soul is so tired. I miss you." She said she knows. So I'm going home to my Amanda tomorrow, for the weekend. My Amanda, my friend of 25 years now. We know each other better than anyone else on this Earth. I feel quite sure we've walked together in other lifetimes, for we'd recognize the other's soul anywhere.
I repeat, I don't do church. On Sunday morning though, I'll attend her Quaker meeting so I will be surrounded by beautiful souls. Such thoughtful people.
This weekend I desire peace.

I continue to work on growing, self-awareness, and self-realization.

Oh, sweet girl, where ya going now?

2017-02-07T00:28:00.000-05:00

When your 12 year old autistic, epileptic child has kept worried all day and night because even though she is quite BRILLIANT academically, she comprehends real life situations about the same as a toddler would. She thinks rocket ships really will take her somewhere and packs a bag. She believes she'll die if she doesn't reblog a post. She will try to walk on her own for miles? to get to school. She'll get in the car and sit in the driver's seat and tell me she's driving to see a kid from her class. But the car sits there, quiet. She has no idea how to start it. *thank God *
I am reminded of when I was two and tried to pedal down the road to the store for my mom. I didn't comprehend the dangers of doing such a thing because that part of my brain wasn't yet developed. Neither is Emma's. She's still trying to catch up. It's frustrating for her.
And so frightening for me at times.

I have yet to get it right

2017-01-24T22:50:00.001-05:00

I've been pretty independent since I was a toddler. I remember mom telling me the story of how I got on my Red Flyer tricycle while she was napping. She woke to a quiet house. No April. She ran outside and heard the squeak of the trike as I peddled down the busy farm road. Where was I off to? Well, to get mom Pepsi and doughnuts from the little Belle Union store.
I was generally a quiet child. I was called shy. I wasn't shy. I had severe anxiety. It was crippling at times. Around close family and friends though, I was at ease. My true self shone. Shined? I'm too tired to look that up. Since I was small I've been called sassy, bossy,snarky. Yes, that's me. I still have anxiety, but it has lessened as I get older. Oh, I still have some panic episodes where I feel paralyzed. It's still hard to make a phone call sometimes. I am mostly alright though.
Now back to the independence thing. I've always been headstrong. I do what I want, when I want. I am polite, responsible, kind, etc. But I have a mouth. I'm not sure where I got it. I'm one of a kind in my family. I've embarrassed my dad on more than one occasion. But he also knows I'm his go-to person for dealing with business phone calls for him- I can put on That Telephone Voice and get the job done. Making HIS phone calls aren't a problem- it's making my own that cause so much anxiety.
I take care of my children, my house, either do maintenance work myself or hire someone, take care of the car, pay bills- I do it all. By myself. Without complaint.
I have a fault though. It contradicts my independence. My heart is so big. When it falls in love, it falls in love big time. It can't be stopped. I have actually said the words Oh Shit *to myself* upon falling. My head knows better. It knows I shouldn't. But my heart says with a sniff Go Bugger Off Stupid Head.
It isn't that I NEED someone in my life. I am not a desperate woman. I have never been out Looking for Love. And really, I haven't fallen in love that many times.
I have yet to get it right.
I won't be with someone who I am not in love with. Clearly.
And even when I have been with someone, really, I have always been so alone.
Underneath all the independence. All the badassery I radiate. I am just me. And just me wants to be in love with someone who is so much in love with me. Someone who is real. Just as real as I am. And honest. Who's tough like I am, and gentle too. Who sees me for who I am and loves all of me. Who loves my children and treats them like they are his own because they are a part of me, not because they need a father. They already have a father.
I have yet to fall in love with the person who will match my radiance, joy, excitement, madness.
#ihaveyettogetitright #stupidheart #love #independent

amazon prime is my best friend

2017-01-16T23:09:00.002-05:00

When you're up at 11:00 ordering math and language arts workbooks, you know you have become a homeschool mom.My homeschooling journey with Emma has just begun. We are still in the experimental stage, and we're trying out all sorts of things. The best part is, it doesn't HAVE to feel like school. We don't start her lessons at a specific time of day. It is whatever works for us, and each day varies. I do make sure to do some kind of lesson on the same days Noah has school. I have learned to keep track of her hours and to document her scores. She does a fantastic job of verbally answering questions about books. We are spending some time reviewing math because I don't think she fully understood some of it towards the end of last semester at school.
The most difficult part for me is juggling work and Noah, and Emma and teaching, along with speech, occupational therapy, much-needed Zumba for us twice a week at school.
Everything is currently trial and error. We do our best.

Something new

2017-01-03T20:03:00.004-05:00

Our family is on its newest journey. Officially we started it 3 whole weeks ago, but with Christmas break interrupting it, tomorrow will mark the first day of actual homeschooling for Emma. Although we are still in a transitional period and in a period of deschooling until I get her curriculum going, we are doing worksheets in the meantime until we can get a rhythm going and establish our days better.
It is my hope to put her back in public school at some point down the road, but right now this seems to make the most sense for us.
Thank you for reading, for following along in our lives. I often can feel your warm, uplifting thoughts.
I do not post as much about my daughter these days. She is 12 now. I respect her privacy.
You know me, dear readers, if I do not write then I die inside. So I'll keep writing, and I'll quash the darkness that comes when I don't get my words out. ❤✍

magic

2016-06-11T09:38:00.002-04:00

She keeps the magic, has carried it with her for years. She's always Believed. ... In good outcomes, in people, in the Universe. Her unwavering faith in Good is no religion, rather the place her Soul is from and is so permanently rooted.

noah, stay little

2016-06-11T00:00:00.001-04:00

dear Noah,

i wish for you to not grow up. not yet. please.
i wish for you to always make houses and cars for the kitties out of cardboard boxes.
please don't stop drawing amazing things at your little drawing table.
never stop writing stories and designing book layouts.
keep playing Minecraft.
keep writing and drawing all of your ideas and dreams.
stay small and kind.
don't stop crying when a bunny gets stuck in the fence.
please always marvel at the butterflies.
stay little. let me keep you. just a bit longer.

haiku again

2016-06-10T23:53:00.000-04:00

she woke up seeing
all the small things she had not.
they were the big things.

16 things

2016-06-10T23:39:00.003-04:00

When you have a child with special needs, any kind of special needs, you
1. are fierce (with your knowledge and your heart)
2. become a fighter
3. love more than you ever thought possible (true for having children period! )
4. cry at the smallest things
5. get much less sleep
6. have constant "brain fog"
7. have mountains of paperwork
8. become a hoarder of paper clips
9. know that owning a scanner/ copier is a necessity
10. celebrate milestones no matter how seemingly small, like when she put a sippy cup to her dolly's mouth! Like, for real, you had cake and put on party hats!
11. will sit in your car in your driveway for long amounts of time and decompress, and sometimes cry
12. get snippy if your "stories" are interrupted, you know-- the ones you've dvr'd that you've been waiting all week to see because you HAVE to escape. If you don't get to escape, you might implode.
13. will think about taking vacations by yourself. So you don't have to speak to ANYONE, except maybe the flight attendant and the bartender when you get there.
14. wish you had a babysitter
15. pray you live forever
16. require an entourage of people who love you, would reach the moon for you, and who will help you in this crazy life.

no more tampons

2016-06-10T23:25:00.001-04:00

things I've thought to myself in the last 8 days since my uterus, fallopian tubes, and cervix were removed:

1. I need to take a shit.

2. right now.

3. 6 days later... seriously? an enema? nooooOOOOOOO.

4. my ribs are sore

5. I wonder if it's okay to have an orgasm...

6. 6 to 8 weeks is a reaallly long time to have intercourse

7. I have to fart.

8. I need to fart right now.

9. I can't believe I don't need pads or tampons anymore!!!!!

10. I've looked at and shopped 2 Baby Registries for expecting moms I know. all I can think is, They don't need any of this crap.

11. I have the BEST kids. I'm thankful for them being low-maintenance and good helpers

12. my boobs seem smaller

13. I bet I lost 10 pounds just taking all those enema-induced killer dumps

14. I have super nice and thoughtful friends and family.

15. I wish I was being massaged. so much so.

16. I'm gonna drive this car. i'm gonna do it.

17. my cats are incredibly needy.

18. I wish they would have taken some fat out while they were at it.

19. I like all my scars.

20. I really took for granted being able to lift things.

21. I wish my arms and back were being caressed.

Yes, baby

2016-02-18T21:27:00.001-05:00

I was just thinking...

How I don't typically DO things for Emma. Like, tie her shoes, bring food to her room, carry her bag, etc., because I want her to know how to do things. She needs skills to succeed in life. She doesn't need to be catered to.

BUT if she is using her voice- not screams or grunts! - and she ASKS for help, I am THERE. I don't care what kind of looks we might get, if she asks me to remove the paper from her waffle cone at the Dairy Castle, I will. She's 11 1/2 and nearly my height. She looks like a teenager. But when she ASKS, I am THERE. If we are out somewhere and she asks for help tying her shoe, you bet I'm gonna oblige.

Obliging is the relief part. So much of our lives is teaching, enforcing, stern voice, and "You Do It, Emma."

THIS. This is what I look forward to- these times when I can say, "Yes, baby, I'll help you. "