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 group...as 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 device...so 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. 

Wednesday, August 16, 2017

What You Don't See



When you look at this picture, you see two people standing on the top of a mountain overlooking with a beautiful view of lakes down below. You may notice that I am wearing gloves. If you look even closer, you might notice crutches between my husband and I, resting on the rock.

What you don't see is the amount of pain and exhaustion I'm feeling while standing there, even after rest, water, and a healthy snack. You don't see the extreme struggle I went through to get to the top of the mountain, nor the number of times I wanted to give up, sure I'd never make it to the top. You don't see the pain in my knees, which I was told to get replaced twenty years ago; the agonizing spasming of my back due to damage already done by psoriatic arthritis and spondylitis; the suffocating ache in my chest from costochondritis; or the  deep, deep emotions of this accomplishment. You don't see the amount of medication coursing through my veins that made this possible, nor the days of recuperation required afterward.

There are many people living with "invisible illnesses." I am one of them. Most people who see me walking without assistance or see photos of me standing at the top of mountains assume I'm able bodied. Not even those closest to me can really fathom the amount of pain I experience and exhaustion I face on a good day, nevermind a bad day. I have become expert at acting as if I'm not in pain. I can put a smile on my face and keep on moving through it most days. 

What you don't see is the gratitude my illnesses that brought into my life, and how much my life has improved in many ways, even as I've become increasingly ill. I am thankful for each step I take; for my crutches and wheelchair that allow me more freedom than my own two legs do; for slowing down; for finding things I can do that feed my soul and energize me; and for the ability to let go of things that don't serve me and my family well; for pain and exhaustion that point my life in the right direction.



Tuesday, August 15, 2017

What To Say



Why do people hate? Why do people do and say horrible, violent things? 

And how do we not hate them in return?

When I look at photos from that night in Charlottesville, VA, it sends chills down my spine. It is evident that these people believe in what they are doing, the vitriol they are spewing. It's difficult not to feel rage when reading about what happened that night. 

What I see is a mass of broken people - people who choose hate over love. People who think that they are superior because of skin color and belief system. People reduced to hate, because they think it's the only choice. 

What do I tell my children about these people? What do I say? They can see everything I see. I need to show them what they don't see... people who, more than likely, feel hated or vulnerable more than loved or secure. People who have been fed righteous indignation in the form of racism and false beliefs until they believe it to their cores. People who are blind to God's love for all all ALL people. People loved deeply by the God they misunderstand so profoundly. People who need prayers ... and love ... and forgiveness.

Yes, more than anything these people at whom we want to scream, whom we want to hate, need love and forgiveness. We need to forgive to move forward, not condoning hate or hurtful actions, but praying for God to touch their hearts and show them love. We need to forgive to promote peace and show that we can love those with whom we don't agree, love them through their brokenness because we, too, are broken people. We need to forgive and to love so that we don't get to the point of allowing hate to rule our thoughts and our hearts. Hate isn't productive, it holds us back. Love compels us forward. We need to forgive because that's what God calls us to do. We need to let go of hate and let God be the judge. 

And I tell my children to see the good. To see the college students holding their ground in the midst of it all. The people who come to others' aid. Those who can't physically be there, but lend their words, their talents, their spirits, and their support to those who can. 

And then I ask what we can do to love against racism. 

Tuesday, August 8, 2017

A Fox at Calumet and Other Places

We spent 16 full days at Camp Calumet - from breakfast July 1 until breakfast July 17. Four children came with us - Alex stayed home. Zack went to a week of Resident Camp and then took the bus home. Haley and Alia stayed for two weeks of Resident Camp. Coren went to a week of Resident Camp, and then joined Jim and I at Family Camp. Jim and I had a week to ourselves at Family Camp during the first week.

Trying to sum up even one week at Camp Calumet in a blog post is nearly impossible -or would be impossibly long. So I'll let our friend give you an idea of how we spent our first week at Camp Calumet, Freedom, NH. Enjoy!




Tuesday, August 1, 2017

No Place I Would Rather Be


Trees rustled in the gentle breeze as notes wafted through the outdoor chapel. My heart burst to overflowing as I watched the sun dancing on the cross and sang, "no place I would rather be...than here in Your love, here in Your love..." It was difficult to believe that an entire two weeks before we sang the same song during our first worship of the Summer at Camp Calumet. Our time there was almost over. It was nearly time to leave the place for which my soul yearns every day I'm not there.

Our time there was full, well-spent. The bible studies in which I participated seemed tailor made for me - one on prayer, the other on hymns. We sang each day of each bible study. We shared personal experiences, growing in knowledge and faith as we explored God's Word in different ways. The hikes (on crutches), both the weekly hike and hiking on our own up Jackman's Ridge, the length of the Outer Limits trail and through the Pine Barrens, were physically, mentally, and emotionally challenging for me, but also uplifting and totally worth the pain. Great conversations with many people, ice cream socials, pontoon boat rides, relaxing and reading, swimming, tie dying, and Drama Camp's performance of Oliver Twist were among the highlights of our sixteen days at Camp.


What I miss most about our time there are the people ... Thomas, who took such good care of us at Family Camp; John, who always has a smile, a good story, and lots of patience; Patty, whose kindness, hospitality, and giving spirit brightened each day; and all the staff, family campers, and visitors with whom I interacted. And the atmosphere ... peace, friendly greetings, trees, lake, mountains, the nightly call of the whippoorwill, laughter, love, time set apart to live in community with faithful people.

There's no place on Earth that I'd rather be.


Monday, July 31, 2017

Comfort Zone



People don't want to be in a state of discomfort. We all have our tidy little comfort zones in which most of us do our very best to stay put.

Whether it's being physically uncomfortable, or being in an awkward situation, or confronting someone who disagrees with or challenges ones views, we'd all rather be comfortable, right? I used to think so. But I've learned something over the past few years.

Being involved in theater productions at Epoch Arts, wherein Elizabeth Namen's plays challenge the way we look at things and nudge us into the not so comfortable, I've found myself relishing the unease I feel at times. Discomfort is good. It awakens us to our own prejudices and short-sightedness. It provokes us toward understanding, compassion, or at least learning a little something. Perhaps it even calls us to action.

If I surround myself with like-minded people all the time -people who agree with my personal, religious, and political stances, people who support my life decisions - then I don't grow as a person. If I only put myself in situations that are within my comfort zone, avoiding experiences, people, or lifestyles that are foreign to me, I narrow my vision of and for the world. If I block or unfriend people on social media who don't share my views, I only encourage myself to be as close-minded as I may think they are. 

And so I park my van, get out, and talk to the guy asking for donations for his fake flowers at the side of the road. Low on funds myself, I bring him a bottle of water and a couple granola bars, and ask him what he needs. All he asks is that I stay for a minute and talk to him. He needs human connection - not the kind that yells insults as they drive by or that tells him there is no work for him today - but a willing, friendly, kind ear from someone who cares that a fellow human being is suffering, but doing his best. 

He goes to the labor force place every day in hopes of getting work. On days that doesn't pan out, he stands by the side of the road handing out fake flowers, hoping for donations to cover the cost of them as well as a little extra for food and shelter. He doesn't know what else to do. I ask him if I can pray for and with him. We pray, tears streaming down both of our cheeks. I hug him, he thanks me. I tell him, quite honestly, that it was my pleasure and that I will hold him in my prayers.

Getting into my van, I see him packing up his stuff and starting to walk. I roll down my window, asking if he's ok. He says yes. He got all he needs to sustain him today. He thanks me again. I thank him for making my day so much brighter. I thank God for compelling me out of my comfort zone. And for blessing me with the gifts of compassion, touch, and prayer. We all have something to give, especially when we stray from our comfort zones. 




Monday, July 17, 2017

This is Getting Out of Hand


Just as I'm processing Miss 15, Zachary's birthday sneaks up on me. His 17th birthday to be exact. What was I thinking having children with birthdays a month apart??? 

Zack has matured so much over this past year, and continuously amazes me with his big heart and sense of humor. 

He's been working 2-4 days a week for the past nine-ish months at his temp position at Windsor Marketing Group, as well as juggling homeschooling, family, friends, and Epoch activities. He acted in Epoch Arts' Mini Production, "Collide," and Haunted House in the Fall, and played Rylen in Unfinished People in June in addition to performing in Arts Response: Responding to Hate with Love and Dinner Show. 


He's had fun with friends...



Done good deeds...


Worn a very attractive hat...


Gotten tattoos...


Gone on adventures...


And worn inappropriate clothing for the weather...which isn't really anything new. 


I've had the pleasure of hearing many good things said about Zachary this past year - about what a detail-oriented employee he is, how kind and compassionate he is, how he always lends a hand when needed, how responsible he is, and so much more. 

Zachary, I love you and am so glad I get to be your mama! You get the best gift ever this year - your family back ON YOUR BIRTHDAY after over two weeks family-free! And that's not all! As an extra added bonus, you also get to help unload a half ton of stinky camp laundry and camp necessities from the van upon our arrival home.  Happy 17!
Love, Mama












Friday, July 14, 2017

Propelled



I thought I might die.

Now, I think that several times a day when my body is completely rebelling against anything and everything I want it to do, but this time, I really thought it might actually be a possibility. 

Probably only a tenth of a mile into the hike, my body questioned my brain's sanity and my spirit's stubbornness. I most likely was more than a bit overzealous in my decision to hike up West Rattlesnake Mountain. It's only a mile from the trailhead to the top - no big deal until I remembered and experienced how labor-intensive crutching up steep hills and giant stair-like projections is. Couple that with intense pain from merely trying to breathe, thanks to costochondritis, and this hike wasn't shaping up quite the way I'd imagined. 

Kathy, one of Camp Calumet's staff that was co-leading the hike, stayed with me, mercifully assuring me that there was no need for her to hike ahead with the others, as I'd suggested. She helped me control my breathing as best I could and reassured me that she was fine going at whatever pace I needed. 

At the trailhead, there had been a pile of rocks, with a sign encouraging hikers to take one and carry it a half mile up the mountain to deposit it in a blue bucket. I took a small rock and stowed it in my bag. As we continued up the trail, I looked out for this halfway point. By the time we reached the place to deposit the stones, I was convinced there was no way I was making it to the top. That half mile seemed like ten miles. My body was screaming, I couldn't catch my breath. Yet I propelled myself on. 


Three years ago I made that hike twice - for the first time as the weekly hike during week 1 at Camp Calumet. The second time on our way to Columbus Day Weekend at Camp Calumet. The second time was much different than the first. I had taken the last dose of my PsA medication in order to undergo testing for neurological symptoms I was experiencing...waiting to find out if it was caused by any of the possibilities I was given at the time - brain tumor or multiple sclerosis among them. I was struggling to get the left side of my body to function. I dragged myself up that mountain, determined to see the beautiful fall foliage view from the top, certain this would be the last time I'd be physically capable of making it up that mountain. 

And so I journeyed on, my arms and legs propelling me closer to the top with each step. I constantly thought about just sitting down, resting, and waiting to join the rest of the group as they descended, yet my body kept going. The moment I realized that the top was in sight filled my heart with gratitude. As I sat - finally - at the top, beautiful views spread out before me, I couldn't speak. The beauty in that moment came not from the sparking lakes down below, but in the kindness and mercy shown to me every step of my way up; in the sight of my crutches leaned up against a rock; in knowing what I had to mentally, emotionally, and physically overcome to get there; and in that my husband was right there by my side, his confidence in me much stronger than my own. 





Thursday, July 13, 2017

Longer Than Expected



Due to an unusually high call volume, you may experience longer than expected wait times

It's the same message every time I call the CT Department of Social Services. It's always a longer than expected wait time. I was prepared to be on hold for upwards of an hour and a half, as past experience suggested. I was not prepared for my time on hold to go nearly forty-five minutes past my expectations. 

During my time on hold I read several chapters of a book, wrote a bit about my adventures at Camp Calumet, read a dozen emails and responded as appropriate, got caught up a bit on Facebook and Instagram, posted a photo to Instagram, chatted for a while with someone who stopped by my campsite, walked to and from the bathroom, took some photos, did some editing of the slideshow I'm putting together for my children, all while trying not to lose my mind listening to the on old "music."

During my time on hold, my husband and eleven year old son got changed into fishing-appropriate attire, got their rods ready, packed up what they needed, went over the fishing rules for the lake, put sunscreen on, walked to the beach, signed out a canoe, rowed out into the lake in search of a good fishing spot, fished for over an hour, rowed back, put the canoe back in its place, signed the canoe back in, and walked back to our campsite. 

I was following up on a call I had made five days prior, at which time I was on hold for a mere forty-eight minutes. That call was to find out why, a couple days short of a month after reviewing the periodic report form of a family I'm helping through the DSS process, the changes to their account had yet to be made and their SNAP (food stamp) balance had not been added to their card. The first time I called, the food stamp balance was three days late. The next time I called, it was over a week overdue and still nothing -despite the 24-48 hour promise made five days before. This was not what I was planning on spending vacation time on, but there are worse places to have to be on hold with DSS than outside in my campsite on a beautiful day. 

Two hours and twelve minutes on hold for a two minute conversation.

Somehow, people are supposed to manage to call between the hours of 8am and 4pm Monday through Friday and spend over two hours on hold if need be, just to make sure they're going to receive the benefits they need to survive....AND work at the same time.  I was the person to make the call on behalf of this family because the "head of household" was working all week. When I started helping this family navigate social services, he signed a document granting me access to his dss account just in case of situations like this. I don't know of any employer who would allow someone to take a 1-3 hour break to call DSS, and cannot figure out how people can manage to keep their benefits when the only opportunity to talk to someone about food, cash, or health benefits falls during normal working hours for many. I'm sure the DSS professionals are doing all they can to answer questions and help people navigate the system, but cuts in funding and the number of DSS workers is to the detriment of all. So those of us who need to plan for "longer than expected." 

Friday, July 7, 2017

High Functioning


When you have a child with high functioning autism and you leave him home alone for seven and a half days for the first time, you wonder and perhaps worry about how he's going to do. When this child is a young adult at age eighteen who has been home alone for three days at a time several times in the past and made it to the point where he remembered both to feed and bathe himself without his mother calling to make sure he managed to do both, you have confidence that he'll be ok. 

But when you are the mother of said child and you have OCD that sometimes takes the form of obsessive compulsive worst case scenario thoughts, you stress out a lot before you leave and do your best not to call every hour of every day to make sure your child is still breathing. 

We left our oldest home alone...alone for 7.5 days and then with his slightly younger brother for nine days. He has a cell phone to take with him when he leaves the house. He has keys to the house, which hopefully he'll remember to take with him when he walks to whatever store in which he's interested in or to which he needs to go. There's a key hidden in case he locks himself out of the house. 

In preparation, I took this child to the grocery store. The food he's chosen to survive on for seventeen days includes: chicken fingers, bread, peanut butter, coco loco bars, oatmeal cream pies, golden delicious apples, cheese, yogurt, cookies, potato chips, and pizza. Oh, and ice cream...a lot of ice cream. I guess it could be worse. He also money to spend and he's within walking distance of two grocery stores, a dozen restaurants, and two Game Stop stores. It's those Game Stops that worry me. If I were an eighteen year old gamer, I'm not sure I'd be able to resist spending my food money on a video game. 

I have made this child a list of things to do daily, as needed, and on specific days...empty the dehumidifier in the basement, bring in the mail, water plants, put the garbage and recycling bins on the curb (and don't forget to put them back when they've been emptied), do laundry, bake bread.  I'm fairly sure he doesn't need the list, but I need him to have the list. And I need him to keep a phone next to his bed when he's sleeping so that if he sleeps in and I call, I don't freak out because he didn't answer the phone.

While going over the list and the you shoulds and such, Alex just smiled, nodded, and humored his high functioning OCD mother.

I'm sure he'll be fine. Me, on the other hand ... 

Wednesday, July 5, 2017

Psalm 23


(midrash)

God, Abba,
My Mentor, my Center,
What more could I need?

Your love and grace enfold me.
You slow my breath
and nourish my soul.
My body and heart broken,
You calm me,
Are a balm to me.
To urge me down Light paths,
Your Spirit guiding,
Your Son's example providing.

Fear will not consume me.
Your peace and protection shield me.
You help me forgive-
No strings attached.
You fill my cup to overflowing with Your grace.

Through tragedy, sorrow and pain,
You bless me with joy and fulfillment
Again and again.
Baptismal covenants
wash comfort over pain
Through this life to everlasting.

Monday, July 3, 2017

Part of Your World


I want to be where the people are...

Some days, my physical and mental limitations overwhelm me. The brain fog caused by autoimmune illness slows thought processes and inhibits making obvious mental connections. Word retrieval malfunctions regularly, which is probably why it took me over a minute to type two sentences. It's frustrating to misunderstand someone because your brain isn't making a connection in needs to, or to be talking with someone and not remember a conversation you had with them, or to ask a question and be told an answer, only to forget the answer moments later.

Luckily my family and friends have a sense of humor about it all. By 9pm I'm reduced to utter gibberish, which my sixteen year old seems to understand. My husband, however, just gives me perplexed looks and tells me I'll do better next time. I'm often heard saying things like, "can you put this in the fridge for me ... you know, the fridge that heats things up?" We have a cupboard in our house that is referred to as "under the phone" because I once answered a child's query as to which cabinet a large bowl belonged in quite confidently with "the one under the phone," This made absolutely no sense, considering there is no cabinet under the phone, and the cabinet in question was actually in a different part of the room, under the counter between the sink and the stove. I also once told my mom that she was out of "cucumbers, but that's not what they're called ... you know...the long orange things... bunnies eat them?" 

There are many days that I long to be where other people are with the ability to think without having to wade through a murky mind to do so.

Legs are required for jumping, dancing ...

It would also be nice to be able to use my legs without forethought. I go to get out of bed and need to first take stock as to whether or not I think my hips are stable, then move on to testing out my knees before committing to standing up unassisted. Actually, I do this just about every time I get up from a seated position, come to think of it. And then I'll be walking along and all of a sudden stumble sideways because a knee or a hip decided to do something a little different. 

My family and friends are used to this, but those who don't know me so well often look at me quizzically. Strangers may think I'm a bit tipsy. I usually just shrug and declare that my leg decided to go somewhere without me. 

What would I pay, to spend a day...

When I was first diagnosed, I'd have given anything just for a day of "normality." However, as much as it would be lovely to be part of the able-bodied, able-minded world for even a day, I now can't help but think life would be rather boring without the laughs we get from my brain malfunctions and adventures in freaking people out when I hike on crutches. I am thankful every day that I can walk and talk and think and laugh, and that gratitude is all that much deeper because I know the true blessing it is to just be alive. So, instead of wasting time wishing my mind and body would do everything I wish, I work with what I have, and am thankful. 



Friday, June 30, 2017

When



When will all people be looked at as fellow human beings instead of black, white, male, female, agender, transgender, gender fluid, Muslim, Christian, Jewish, atheist, Buddhist, gay, straight; fat, thin, rich, middle class, poor ... other ... as "those people"?

When will Christians practice what Jesus lived and taught - that the greatest Commandment is LOVE. Not pick and choose who you love. Not love if they are like you; if they believe what you believe;or if they treat you well ... love everyone.

When will hate be a word rarely used, not wielded without thought: I hate this song; I hate her hair; I hate this jacket; I hate myself; I hate anyone and anything that doesn't make me feel good?

When will people who disagree with our views be seen as someone with a different point of view rather than our enemy?

When will we stop judging others based on religion, skin color, who they choose to marry, worth, gender, wealth, ethnicity, appearance, and myriad other things and accept others differences as a part of life rather than a reason to hate?

When will people realize that love doesn't have anything to do with color, gender, ability, disability, genetics, or anything other than love...and that neither laws nor personal opinions should govern who one is allowed to love...or to marry...or to call family. 

We need a love revolution. We need to respond to hate with love. Always with love.





Wednesday, June 28, 2017

We'll Have Nothing Left



I've been packing for weeks. By the time I get finished packing, we'll have nothing left in our house ... or so it feels! 

Packing two girls for two weeks of resident camp, two boys for one week of resident camp, and two adults for sixteen full days at camp is no small task. The logistics of resident camp for children with food allergies and family camp for someone with multiple autoimmune illnesses, mobility issues, and medication side effects makes the entire process even more interesting.

For me, packing involves lists - lists of things to be packed, things to ask Camp, things to do before we leave, and things to do after we get there. 

These lists included...

To pack:
- food for lunch and dinner for 16 days and breakfast for 8 days
- pots, pans, dishes, utensils, etc.
- medications and supplements
- uv protective sleeves (sun "allergy" side effect of one or more medications)
- mobility devices, compression gloves, knee brace, gloves to wear when hiking on crutches and kayaking
- quarters for the laundromat ... lots of quarters for lots of laundry!!!
And all the usual stuff such as clothing, a tent, bedding, towels, toiletries, insect repellant, sunscreen, flashlights, etc.

To do:
- contact Camp about: donating snacks for gluten-free, food dye-free children; the possibility of storing a medication filled syringe in a refrigerator for a week until I need to self-inject; whether or not we can pick up laundry from our 2-week campers when we pick up our 1-week camper
- refill prescriptions for pain meds and injectable psoriatic arthritis med
- buy food for our oldest child, who is staying home while we're at Camp
- arrange for: pick up of one teen from bus home from Camp; someone to pick up and consume our CSA shares while we're away, Netflix dvd queue to reflect older teens' movie choices for the weeks we're away
- physicals for four children and notarized vaccination exemption forms for two non- or partially vaxed children and one who has been vaccinated but is not immune 
- somehow manage to pay all bills and have money left to eat breakfast at the Conference Center some days and perhaps get a pizza for dinner on rainy days when we can't cook over a fire
- get teens with minimalist wardrobes enough clothes to last through their stays at camp 
- buy over three dozen pairs of socks and two dozen pairs of underwear  because the ones I bought a few months ago have disappeared
- color children's hair (and mine, because Alia wanted me to match her) because somehow they can't have natural colored hair at camp

Needless to say, I've been prepping and packing for Camp for months. 

Most of our children have packed most of their clothing, so if you happen to see us out and about and one or more of my children is wearing pajama bottoms or is completely overdressed for wherever we are, you'll know why. And if you drop by and see the mountain of bins, plastic drawer thingies, suitcases, and bags in our kitchen/dining room, that's just some of the stuff we have to attempt to fit in our van while leaving room for children and parents. 

It's a good thing I enjoy packing (mostly).  And I figure since I've done the bulk of the packing, I'll leave the unpacking up to the rest of my family upon our return home. That's fair, right?!?




Friday, June 23, 2017

Killing Me


I usually don't post about political things, but reading about the proposed healthcare bill that would replace "Obamacare" terrifies me. Should our current healthcare system be replaced by this atrocity, it could kill me. And others. Literally.

The majority of people on Medicaid are disabled, elderly, mentally ill, and children. I've read a lot in the past couple days about any cut in funding putting these people at risk. At risk of what, they don't usually spell out, so I'll do it for you. It puts elderly people, children, mentally ill people, the otherwise uninsured, and disabled people at risk of getting more ill. At risk of dying. 

Should I lose my Medicaid, I would not be able to afford health insurance. It would mean going off of the medications that I take that keep me functional, because I wouldn't be able to afford them. If I go off of these medications, I will no longer be able to walk. My joints would deteriorate to a greater extent, and quickly. It would be difficult for me to get out of bed. My autoimmune liver disease, which is at bay thanks to these medications, would rear its ugly head and could eventually necessitate a liver transplant, which I would also not be able to afford.

Losing Medicaid could kill me, slowly and painfully. 

For those of us who could possibly lose health coverage, the results could be devastating.  We could be refused treatment due to the regulation of which medications we're "allowed" to take or a cap on the cost of medications covered. Or the state could decide that insurance companies are no longer required to provide health insurance to those with pre-existing conditions, as that decision would be left to each state to decide, if I'm understanding correctly. 

I didn't choose to have a particularly aggressive case of psoriatic arthritis, ankylosing spondylitis, autoimmune liver disease, Hashimotos thyroidosis, celiac, OCD ... am I missing any? I planned on going back to work. Instead, I struggle every day to get out of bed and to keep moving, even with treatment. I give back through volunteer work, which would also become impossible should I go off of treatment for my illnesses. 

Disabled people do not choose to be disabled, nor do people with Alzheimer's or dementia or clinical depression or bipolar disorder choose how their brains work, nor do those children born into poverty choose to not be able to afford health care. Many people are one health crisis away from needing assistance themselves. 

The solution to this health care situation will not come about through the current administration's plans. It will, in fact, be made worse for the most vulnerable among us. 


Sunday, June 18, 2017

How Old?

Sometimes birthdays catch me off guard.

Yes, I knew Haley's birthday was coming up - that it's today. We got her a gift and planned a (albeit joint birthday / graduation / Father's Day) celebration. What I failed to do was wrap my brain around the fact that Haley is fifteen today. 15. One year away from sixteen. How the heck did that happen? How is my third child that old???

Looking back over the past year, I came to the realization that most of the highlights of Haley's year have involved performing in some way shape or form...

In Androcles and the Lion at Camp Calumet Drama Camp:


In Epoch Arts' Mini Production, Collide, in which she got to create her own character and write her own part:


In Haunted House (at Epoch Arts, of course!):


And made leaps and bounds in creating SFX make-up gore:


 In Epoch Arts' Arts Response: Responding to Hate with Love in which she sang "Losing" by Tenth Avenue North and in Dinner Show, in which she sang "Light in the Hallway" by Pentatonix and did a Jabberwocky skit.


She did have fun with friends at Lake Compounce, Mystic Aquarium (what an adventure the first time we attempted to go!), and other places: 


And most recently she played Finn, Seeker of the Snagglelump, Tooter of the Trumpet, Tamer of Deegan, Clanger of the Cymbals...in Epoch Arts' Mainstage Production, Unfinished People:


Haley amazes me every day with her ability to overcome joint pain and exhaustion in order to accomplish all that she does. Her bold creative spirit inspire me every day to overcome my own insecurities, step out of my comfort zone, and do crazy things like use the sewing machine. One of the things that I admire about her most is that she is fearless in her endeavors and jumps in with both feet - whether it's performing, crafting, special effects make-up, or cooking amazing things from scratch, without a recipe, and with whatever happens to be in the fridge at the time.

Happy 15th Birthday, Haley!!! May you always remember that the Snagglelump is always with you and to stay connected to something bigger. I love you!