Thursday, November 16, 2017

The Dark Side

Life isn't easy for me at the moment. In reality, it never is, but right now I'm really struggling. This is the dark side of chronic illness that no one wants to hear about. People want to hear stories of people thriving despite living with chronic illness, not stories of suffering...but those are the stories that permeate every day of my life.

I have severe allergies and a cold. No big deal for most people. Devastating for me. I took myself off psoriatic arthritis medication until my lungs clear, as I don't want to land myself in the hospital with pneumonia. Between the coughing and the pain, I barely sleep. Every time I cough, it feels like my ribs are shattering. Several times now, the pain from a coughing fit has caused me to be sick to my stomach. Every joint in my body is screaming, and I'm having trouble keeping prednisone - my only hope for reducing inflammation - down. 

Off PsA meds, my body is attacking itself. On them, I might get sicker. Off them, my autoimmune liver issues could flare, causing taking any form of pain medication to be risky.

I want to curl up in bed, but that will only make things worse. I can't lay down, or fluid builds up in my lungs. Sitting is excruciating. Standing is exhausting. And we're so busy ... homeschool co-op, Tuesday Night Sunday School, School of Lay Ministry, Contemporary Dance, Breaking Silences, Puppet Academy, theater rehearsals, plays friends are acting in, Artopia ... which is both a blessing and a strain. I feel a bit better when I'm active, but tire easily. My thoughts are consumed by the pain - I even experience pain in my dreams. It hurts to move. It hurts to stay still. It hurts to breathe.

The reality of many living with chronic illness and chronic pain is that a cold can be a calamity, and a normal day would be considered cause for a trip to the emergency department for those not chronically ill. We live in survival mode every day, putting on a mask of normalcy as to not drag anyone else into the reality of our everyday struggles. 

Welcome to the dark side of chronic illness and chronic pain. It's not pleasant to talk about or to live through, but it's life and I live it. 

Tuesday, November 7, 2017


I was off psoriatic arthritis meds and undergoing neurological testing when I went to the thrift store and used my wheelchair to get around. While I was checking out, the person behind me said to me that I was such an inspiration, being out and about in my condition. All this person knew about me was that I was a human being in a wheelchair - yet because I was in public in a wheelchair, I was an inspiration. Or maybe it was because I was cheerful and in a wheelchair? I have no idea. The point is, to me, a person using their body to the best of its capacity in an everyday setting isn't inspiring. It's life as usual. It's like calling a three-legged cat inspiring. It's not. It's just that a cat with three legs can still do cat things, but makes compensations for a different body configuration. Or a person wearing glasses being an inspiration for leading a productive life despite needing the crutch of glasses to be able to function better.

Many people with disabilities don't like to be called inspirational just because they are leading functional lives. Often I don't know how to respond, because in some contexts, that statement, as well-intentioned as it might be, negates me as a person and objectifies me as disability in action.

What is inspiring, is someone who speaks up for those who can't or are too afraid to speak for themselves. Someone who works to the best of their ability to make the world a better place. Someone who uses their talents to help others. Someone who lives life, instead of just going through the motions, when life is at its toughest. Someone who stands up for their beliefs even if those around them do not agree with them.

Do you know who inspires me?

A young refugee family I know who, in less than eleven months have learned a good amount of english, gained employment, and is acclimating to this country beautifully, even when they miss home and family. Who, even when they're unsure what the future holds, thrive when the resettlement team takes a step back to let them fly on their own.

A wonderful, kind, friendly man who grew up in Rwanda, witnessed horrible atrocities, and still managed to see, be, and share God's love and grace in and with the world.

A beautiful young woman who didn't have the easiest childhood, and who by all means could live life angry with the world, but who radiates her faith and God's love through her words and actions. 

A group of teens who are comfortable enough with each other to talk about anything and everything - and who don't flinch when one mentions that he's bisexual or when another requests a change in personal pronouns to match their gender. 

And so many more people who are inspirations for who they are and how they live their lives...not what "normal" things they are able to do despite their physical differences. I'd rather you be inspired by my words or my actions rather than by my participation in life despite my physical limitations.

Thursday, November 2, 2017


Welcome to Epoch Arts Haunted House. Before entering, I need to lay down some ground rules. Our actors will not touch you - do not touch them. Anyone found mistreating our actors in any way will be escorted from the Haunted House by someone much scarier than anyone you'll find inside. Do not use your cell phone or any other device to take photos or video of our Haunted House or to light your way through our Haunted House. Our creatures like it dark in there, and we wouldn't want to upset them... any more than they already are. You will enter the Raven's Nest, meander through the Corn Maze, partake in a little Farm to Table, and perhaps buy a souvenir at the Creepyhollow Souvenir Shop. Don't worry - you don't need any money ... although it may cost you your head. Please stay together as a group as you make your way through the Haunted House - we wouldn't want to lose anyone...again. Enter: The Harvest.

And so it began ... over one hundred times over the course of two Friday and two Saturday nights in October. Fifty or so youth, ages eleven through eighteen ... and a nine year old who wore down the director over the course of the past six years in order to gain a part in Haunted ... and a few young and not quite so young adults put together this amazing experience. Room leaders and cast members gathered donations to pay for room supplies, and did the work of designing the room, putting up walls and curtains, putting together costumes, scripting, decorating, and lighting their rooms. Many room leaders spent many hours, several days a week on top of the scheduled two hours on Sunday afternoons, doing the hard work it took to get their rooms ready for opening day. In addition, the queen of the zombies did a lot of work recruiting the largest cast of zombies ever featured as part of the zombie hayride, as well as doing costuming for all of the undead. Add in make-up artists, ticket sellers, hayride drivers and followers, parents and youth who baked goodies for the cafe - and people who sold them, and around a hundred people were involved in this haunted adventure. 

The work everyone, especially room leaders and artistic directors put in was astounding. The end product was lauded as the best haunted house in the state by many who experienced it. I am honored to have been a part of something so extraordinary.

If you missed it, you'll have to wait until next year ... and it's sure to be good, as the room leaders have already started planning rooms for Haunted 2018!

Tuesday, October 17, 2017

Me Too

As a child, I was given the message that I was somehow less than in reference to boys because I was not allowed to do things such as be an altar boy in church or play baseball with the boys.

I was chased around the playground by a boy who threatened to kiss me, no matter how much or how loudly I said no.

As a teen I was sexually abused.

And raped. 

As a young adult,  I was afraid to walk across my college campus at night, alone.

Men pressed up against me in bars, saying suggestive things - even men who knew I was married.

And things haven't improved as an adult. 

I've had people talk to my husband about me, in my presence, referring to me as "she" and not acknowledging that I am a person, an equal, and can speak for myself. 

I've had men suggest that they need to talk with my husband about things surrounding car and home repairs, as if women are by default lacking in knowledge about such things - and men by default know about these things. 

I've been dismissed by male doctors when I've questioned the information they were telling me about breastfeeding, citing medical studies to support my medical decisions when they had no sources to cite to back up their own "information." I've been told my male doctors that I was just being dramatic, when in fact, I was in extreme pain, and deeply depressed. 

Most women are aware of how differently they're treated daily. Women with abusive pasts live with some amount of residual fear every day. 

But this is not a women's problem. It's a men's problem. It's about how men act, what they think, and how they treat women. Many men don't realize that what they are doing is wrong. Many think they treat all people equally when their behavior says otherwise. But even if their own behavior doesn't reflect this mindset, perhaps their lack of action when another man mistreats a woman does. 

As a woman, I tend to need to stand up for myself and for other women all too often. 

I'm not saying that others aren't mistreated, or that men are exempt from sexual harassment or abuse. But today I'm speaking up for women. Especially those who don't feel they have a voice. 

Whatever your gender, please be mindful of how you treat others, what you think of others, and what you say about others, even when they're not listening.  

Tuesday, October 10, 2017

The Best Part

The sun glimmered off the lake outside the window while we listened to a dynamic pastor pack a lot of information into amusing stories and thought-provoking examples. Beautiful surroundings, great food, and wonderful people provided for an amazing weekend. The sixty-some-odd of us ate, learned, and worshipped together during our time there...becoming more community than a hodge-podge of lay ministry retreat attendees. 

Beyond the inspiring learning experience, I treasured waking up before the sun and curling up in a chair on the beach to watch the sunrise, wrapped in a blanket, a cup of coffee in hand. And sitting with different people each meal, sharing our lives and our faith with each other as well as stories shared around the campfire. And enjoying the peace and freedom of kayaking on Lake Ossipee with a friend. 

But the best part of my entire weekend happened because someone needed a ride. 

A phone call from my friend and retreat roommate at 8PM the night before the retreat prompted me to make a call, offering a ride to a first year student. We seemed to hit it off from the moment their suitcase landed in the back of my van. We learned a bit about each other as we drove to camp, and my study group adopted our new friend into our group for the weekend, as the only other person geographically close enough to them to form a study group couldn't make it to the retreat.  

During evening prayer on the first night, the leader instructed women to say one part, and men another during a particular part of worship. My new friend leaned over to me and whispered, "What if you identify as both?" I smiled and replied, "Then you say both." My soul did magnify the Lord and my spirit rejoiced as I said those words with all the women in my my new friend read both parts without hesitation.

The splendor and peace in the sunrises and surroundings, the community of faith, the wisdom imparted, the meals and the Meal shared with all knit themselves together into a beautiful tapestry that I hold very dear. But the best part was meeting this person of deep faith and deep love, who embraces who God made them to be - and getting to call them friend. 

Thursday, September 21, 2017

The Most Holey One

I always have three nightgowns. I have a newish one that I don't mind throwing a pair of shorts under and answering the door on days that call for such a thing. I have a middle-aged one that has been through some stuff, but is still fairly attractive....still good enough to wear when my in-laws are visiting, but not in front of strangers. And then I have the most holey one, which I'm sure is going to disintegrate at any moment. Guess which one's my favorite?

The most holey one has been through a lot. I wore it while in labor with Coren, and he just turned twelve. I found it at a thrift store the Summer I was pregnant with him, a welcome replacement for the nightgown I'd laid to rest not long before. That one had been through Zachary and Haley's pregnancies and labors and lots and lots of days and nights of parenting two, then three very small children. 

I nursed three children in this nightgown, the last of whom weaned four years ago. This holey one soaked up my tears through and after my twin miscarriage, when I practically lived in it when I didn't have to be dressed and pretending to be managing life as normal. It got me through many sleepless nights nursing a pile of sick children, and hot, sticky nights our first time camping at Camp Calumet. It has been my go-to on too many days in bed due to joint pain and/or migraines. 

It's amazing how many memories are wrapped up in one piece of clothing. Perhaps that's why I still wear it, and will probably continue wearing it until it disintegrates. 

Saturday, September 16, 2017

He Does This To Me Every Year

He does this to me every year.

Every. single. year.

He refuses when I tell him we can just skip it this year and doesn't like my suggestion that since he insists on it every year, I should get at least one year when I get my way. But alas, he says it's not a choice whether or not he has a birthday, it just happens.

The problem is, Coren is not turning 8 or 9 or even 10. He's going to be twelve, which is almost thirteen, which is giving me a bit of a panic attack. How did this adorable round toddler turn into such a thoughtful, cuddly, kind, intelligent almost-teenager?

My little Moondragon isn't so little anymore. That he is old enough to be starting Confirmation class soon amazes me. He is delving deeper into the theater world, writing his part and acting in a one-act play at Epoch Arts this Autumn and is expanding his computer knowledge through Video Editing class at homeschool co-op. The latter class choice is most likely inspired by the creation of the video he helped put together of the Fox at Calumet's further adventures:

Coren had matured immensely this year. He has been working hard to overcome some of his anxieties, has become more responsible, and surprises me every day with the thoughtful and unique answers he has for his homeschool writing assignments. 

Happy 12th Birthday, my Moondragon! I can barely wait to see where this year takes you!

Wednesday, September 6, 2017

Learning to Read

I did not teach my children how to read.

I read to my children from the time they were born until they sighed and rolled their eyes at me when I sat down to read with them...or until they insisted on reading to me. Often, as young children, they would sit in my lap, looking at the pictures and following my finger underlining the words as we read. For books without pictures, they would close their eyes, envisioning the story in their minds, and complain when I'd stop reading, thinking they had fallen asleep. They were just deep into the story's world, captivated by the scenes that unfolded as they listened. 

My children also followed along with me in the book of worship on Sunday mornings. As we sang hymns, they would again follow my finger as I underlined the words. Hymnals are wonderful for learning to read, as most words are broken up, syllable by syllable. 

Often, I'd hear, "what does that say" from the backseat of the car, from the child riding on my back as we took a walk, or while we were perusing a menu. Most times, I wouldn't ask the child to sound it out, I'd simply ask what letters were in the word to make sure I read the correct word to the child.

I spoke to my children as human beings, not as immature creatures who spoke a language called baby talk. I used big words and a normal tone of voice. 

My husband and I would spell things when we didn't want our kids to know what we were talking about, as parents tend to do. Our children quickly caught on to the fact that i - c - e - c - r - e - a - m at F - r - i - e - n - d - l - y - 's was something very desirable, so other things we spelled must be as well. Once our oldest became a whiz at deciphering quickly spelled words, we started to have to use bigger words, rather than spelling words. For example, I once asked my husband if he wanted to venture forth with our progeny to the amicable eatery for frozen dairy delights. 

Our oldest child started reading at age two and was reading fifth grade level books by age five. Our second child was an early (but not quite that early) reader as well. I admit to a bit of panic when our third child reached the ripe old age of six without an iota of desire to learn to read. However, by six and a half, she had her sights set on reading Little House on the Prairie by herself, and in six weeks went from "See Spot. See Spot run," to "Once upon a time, a little girl named Laura traveled in a covered wagon across the giant prairie." Our fourth child learned to read in order to play the Pokemon card game with his siblings when he was seven. Our fifth child swore she couldn't read, and then got caught by her grandparents telling them about what she had read on science center animal habitat description sign after previously making them read many of the signs to her. She was five.

As they grew older, they would grab a book and curl up on my bed with me, joining in the luxury of getting lost in a book.

My children were never forced to learn to read. They came about it quite organically, in their own time, and learned in their own way. We gave them a good foundation and were there for them when they needed assistance along the way. They all love to read, making a beeline to the book section of the thrift store upon entering, no matter their mother's plans for the shopping trip. To them, books are beloved friends, things to be treasured. And I love it that, when given the choice, they would rather hold a physical book in their hands than read it on a they can have what they consider the full reading experience. 

I didn't teach my children to read. I modeled for them and encouraged in them a love of reading.

Monday, August 28, 2017

Fantastic Teens and Where to Find Them

This past weekend, my 15 year old and 17 year old celebrated their birthdays with a couple friends. Their birthdays were in June and July, and it's now the end of August, but summer happened and this is when we could manage to pull it off. 

Zachary (17), hosted his half of the party at the local bowling /laser tag / game room place. Haley (15), set up a magical Harry Potter party at home. That my teens are willing to share a party, and just have a couple friends over so they can catch up before the new school year begins, warms my heart. 

My husband took care of the bowling/laser tag part of the party, and then took Alia and Coren out for a couple hours so the teens could have uninterrupted fun. I am incredibly thankful that I got less active end of the stick. 

I retreated upstairs to my youngest children's room, caught up on emails, homeschool co-op stuff, and, when I couldn't stand it any longer, sorted through the pile of clothes awaiting their place in Alia's already overstuffed dresser. The teens watched Fantastic Beasts and Where to find them, enjoyed homemade butterbeer, and ate pizza, snacks, and Harry Potter themed candy. Laughter and animated conversation wafted up the stairs, and I did my best to let these fantastic young adults do their own thing. 

I'm impressed with the two birthday children. Zachary realized his portion of the party was out of range of our budget, so opted to pay for it himself. Haley made up potions and jars of potion ingredients, gathered decorations and suitable candy, and put together quite the display to help get everyone in the Harry Potter mood. She also got glass bottles in Hogwarts house colors as party favors and baked pumpkin muffins instead of cake. 

If you're looking for some fantastic teens, I know where to find them!

Thursday, August 24, 2017

Unschooling Is Not

Unschooling is not unparenting. While we strive to give our children autonomy, we do so within a framework of safety, cleanliness, boundaries, and moral standards. We work together to keep our house cleanish. We take responsibility for our actions. When we commit to doing something, we follow through to the best of our ability. We are kind. We treat each other as we would wish to be treated. We forgive. We ask for what we need. We offer each other what we can. We respect each other, our house, and our possessions and do our best to take care of all of them. 

Unschooling is not non-learning. It is learning through conversing, experiencing, reading, creating, dreaming, asking, doing, listening, and sharing. It's taking a class or attending a workshop when we so desire. It is following our passions and interests where they lead us. It is encouraging our children to make their own decisions and giving them the tools and the desire to learn whatever they want to learn. It's modeling a love of learning to our children and taking interest in hearing about what they've learned. 

Unschooling isn't limited to any required curriculum, to what a textbook dictates as the end of learning about a topic, or by grade level. Unschooling allows for children to learn at their own pace, in their own way, following their own interests. When someone is interested in learning something, they retain the majority of what they learn. When someone is taught something in which they have little to no interest, they retain very little. 

Unschooling isn't socially isolating or sheltering. It is being out in the real world for many more hours a day than our schooled counterparts. It is interacting with a wide range of people of all ages, religions, cultures, and economic statuses. 

For my family, unschooling is participating in church activities, homeschool co-op, theater, puppetry, choir, MTG tournaments, a refugee resettlement ministry, Camp Calumet, and volunteering with various non-profit organizations. It's participating in programs and events dealing with issues like homelessness, addiction, violence, religious diversity, gender diversity ... and not only learning about these issues, but meeting the people affected by them, hearing their stories, and finding out how we can advocate, educate, and make the world a better place. It is getting a three year old a dissection kit and teaching her how to use a scalpel, because that's what she's yearning to do (and because I wouldn't and couldn't get her a cadaver). It's teaching a child to bake because she wants cupcakes. It's buying more Pokemon cards because it's the method one child has chosen as a path to learning to read. It's getting used to a teenager emerging from her room with bloody gashes and bruises because she's into special effects makeup. It's asking a teenager what could possibly be gained from playing an online game and having him come back to you with studies on hand-eye coordination, critical thinking, and other related material in support of his choice of entertainment and, apparently, educational material. And some days, it's being at home, playing on the computer, reading books, playing games, and doing housework, because that's life.

Unschooling is not laziness or bad parenting ... it is discovering over and over how much life has to teach us.