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! 







Wednesday, June 14, 2017

Beautiful Things


In celebration of Pastor Wayne Gollenberg, on his retirement....

Endings are emotional and difficult ... and exciting, as they are also beginnings.

As you begin this next exciting time of your life, I find myself having difficulty expressing the appropriate amount of gratitude for your presence in and impact on my life over these past fifteen or so years. What is stunningly clear to me is that you have been the vehicle through which God has done many beautiful things, not only in my life, but in others' lives and in our Church (a people, not a steeple).

Many people may see your retirement- your leaving our congregation - as painful, a loss. We will all miss you and all you do for the Body of Christ. It seems to me, though, that some are missing the fact that in many ways you will remain a part of all of us, and a part of our Church, always.

Over the years, you have time and again preached just the sermon I needed to hear at particularly low or stressful times. Consumed with worry over overwhelming financial, health, and personal struggles, I found myself getting my young children up and ready for worship one Sunday morning when I'd have rather just stayed in bed, in misery. I cried the entire drive and barely pulled myself together and into the fellowship hall for worship. As the words of your sermon washed over me, so did peace and an understanding of just how much God's love was continuing to work in my life, even through times of trial. That was the first time I fathomed the depth of God's grace and the words, "don't worry, God is with you." It was truly life changing for me.

Thank you for Tuesday Night Sunday School, which is the reason my family started regularly attending worship. And for inviting parents to Confirmation class, as I needed it as much as my children did. The vast amount I've learned through both ministries has come into sharp relief as I navigate my way through the School of Lay Ministry. Thank you for being such an involved, in tune, and inspirational teacher.

Somewhere along the way I found your suggestion of "wouldn't it be great if we had an interpretive movement performance of It's About the Cross after the pageant" had somehow turned into me heading up the Interpretive Movement Ministry at OSLC (which still needs a shorter name!). Not that I mind, as it's a wonderful "I get to" in my life.

Thank you, Pastor G, for you...and for doing so many beautiful things during your ministry at Our Savior Lutheran Church. We will miss you immensely, but the beauty of your works and your words will remain with us and in us.

Tuesday, June 13, 2017

The Cost of Living


I could minimize the pain I experience, the exhaustion, the migraines, and the overall ill feeling that clings to my being. I could choose to avoid doing things that wrack my body with pain and necessitate days of recovery time afterwards. I could merely exist.

I choose to live. I choose to pay the quite high cost of living in this body. I choose to pay the price of pain, nausea, fatigue, even pain-induced panic attacks in order to live life to the fullest.

Every day I weigh the cost of doing anything from mundane tasks to fully investing myself in a day full of theatrical rehearsals, the care and keeping of a horde of teenagers, and doing daily mom things. At times, a trip to the grocery store necessitates rest for the remainder of the day. Other times, I can keep going all day ... or for a few days ... and then spend two or three days, sometimes a week, paying back the debt of energy and body use.

The wrench in the works is that I never know how much I have in my being-a-functional-person bank each day. Some days I start out feeling like I can do everything on my to do list and then some, only to find that halfway through my second errand that I'm about to pass out from fatigue or pain. Other days I feel like my stores are beyond depleted, yet rally toward the end of a day of relative rest.

The constant uncertainty makes every day an adventure, although most days, not the adventure I'd otherwise choose.

Not long ago, tech week for Unfinished People - an original play in which two of my children acted and for which I did costuming, made props, and various other things - engulfed my life. We had rehearsals daily for a week, followed by three performances. The same week, I spent at last fifteen hours working on a book of remembrance for my pastor, who retired on the day of the last Unfinished People performance, as well as leading an Interpretive Movement Ministry performance, needle felting twenty caterpillars for cast gifts, and trying to balance daily living, five children, running a household, and getting enough rest so my body wouldn't shut down.

Things were going ok until Thursday, when I had a migraine that nearly caused me to cancel all plans for the day. Thankfully some ibuprofen, caffeine, packing my head in ice, and taking a nap helped me on my way. An increase in medications that keep me moving made the rest of the week and the weekend possible. 

And then there was this past week. I was barely able to get out of bed for three days. The first day, I didn't get out of my pajamas. I managed a trip to the grocery store the next day, a trip to the thrift store another, and another couple errands day four. I still haven't made it back to relative normal, but should in a day or two. 

This is the price I pay for doing what I love. And that's ok. Along with scheduling doing things I love, I schedule time to recuperate from said things. This is my life, and I choose to live it, not just go through the motions, even if the cost of living is high. 

Friday, May 26, 2017

Wake Up


We were to learn of sermons and scripture, preaching and purpose, and use our imaginations in the process. As we entered the first session of our School of Lay Ministry retreat, I was excited about the theme of the weekend, "Opening the Word, playing with Midrash." 

As we, led by Pastor Elaine Hewes, explored the sculpting of a sermon, I realized just the impact a current sermon has been having on my life. Current, not recent. I'll get to that later.

Pastor Elaine spoke of asking questions about what God is being and doing in the text, and answering those questions in a way that leads people to a place where they feel they should respond. She encouraged the sharing of personal stories of struggle that might speak to the text, or perhaps juxtaposing two unlike things to carry the message across. She spoke of journeying through the week with the text, waking up to the things, people, songs, interactions, and such in your life that speak to the text and to your heart and bringing some of these into the sermon. And much more than I can sum up in a simple paragraph. 

As Pastor Elaine spoke, I had a revelation. This is what a friend of mine does when she writes a play. Or speaks to teens about tough stuff. Or encourages friends. She wakes people up. She draws on her life struggles, images that inspire her or shake her up, things around her that catch her imagination, and instills them into the essence of the plays that she writes or passionate words she speaks. Her plays are one big sermon. They talk about the tough stuff in a way that inspires the audience to at least think, if not act in response to the issues presented in the play. To act, not out of guilt or obligation, but out of a pull from your inner moral compass after experiencing the performance. 


The sermon that is Beautiful Things, last year's original play by Elizabeth Namen at Epoch Arts, continues to speak to me and change me to this day. Unfinished People, the play currently being rehearsed for its June 2, 3, and 4 performances, is doing the same. Community, distraction, addiction ... meat ants and caterpillars ... the Snagglelump ... the poetry, severity, hilarity, and motivation of her words call me to wake up and take notice. 

Distractions and separateness rule our lives, blinding us to mystery, to community, to love, to the beauty in the juxtaposition of seemingly unrelated things. We need to wake up, look up, stay connected to something bigger. 




Thursday, May 18, 2017

Muchness


My life has been filled with Muchness lately.

Much pain.
Much stress. 
Much joy.
Much celebration.

Communication issues with my rheumatology office led to a week and a half delay for an injection of one of the two medications I need to manage my psoriatic arthritis. This caused a decrease in energy and increase in pain and inflammation...just when I needed energy and (relatively) easy use of my body for theater rehearsals, Spring Cleaning Weekend at Camp Calumet, and getting my house in order in preparation for the arrival of house guests.

Issues with my van leading to necessary repairs of nearly a thousand dollars combined with several other unexpected expenses have us in a financial bind, eased greatly by generous family members. Even so, we have gone from saving up money for a nice two weeks at Camp Calumet this Summer to wondering if we'll have the gas money to get there.

The muchness of pain and stress is balanced by muchness in our joy and celebration. 

Exciting things are happening in our lives. The original mainstage production of Unfinished People in which two of my teens and I are involved is going amazingly well. It is incredibly inspirational working with this group of twenty teens, along with the Epoch Arts staff and volunteers on this production. The Dinner Show they put on exceeded expectations in both talent and hilarity.  And we got to spend time at Camp Calumet along with over one hundred other volunteers to help clean up Camp and get it ready for Summer Camp. A family visit for Mother's Day weekend provided much needed rest, fun, and connection with two amazing mothers who we get to call Gram and Grammy. 



And I get to go back to Calumet this weekend for a School of Lay Ministry retreat. And we got to see our friend Bailey perform magnificently in a production of Bye Bye Birdie.  And we're planning for 16 full days at Camp Calumet this Summer, which will be absolutely wonderful even if we don't have the money for daily breakfast in the Conference Center or a few day trips as we had planned...simply because you can't have a bad time at Calumet! 

There is so much to celebrate in our lives and the lives of loved ones as well. Khalid and Reem, the Muslim refugee family we work with through New Start Ministry, got married in a civil ceremony performed by a Christian pastor in a synagogue. How glorious is that? And my sister's younger child got their name officially changed. And we will be celebrating the homeschool graduation of our oldest child next month.


In thinking about all the struggles I have in my life due to my illnesses and limitations, I can't help to concentrate not on the pain and stress, but on the abundant blessings God provides in our lives. The muchness of joy in our lives far surpasses the muchness of pain. 

Saturday, April 1, 2017

Giving Up and Giving In



I've had a two week long allergy attack and a week before that started a two week migraine. I do my best each day to act ok for as long as I can until suddenly I can't and am completely, utterly miserable. 

In order to get through my days, I've found that I need to conserve energy. In the process, I've found myself giving up a lot of things.

I've given up leaving the house on time (for my OCD self, that's twenty minutes early). I've given up caring about traffic, weather conditions, or whether or not we'll arrive at our destination at the time I perceive I need to arrive there. In addition, I've let go of my need to get the puppets I'm building for St. Paul Puppet Academy completed before rehearsal, as it's completely unrealistic with how busy I've been and how lousy I've been feeling.

I've given in to the comfort of my favorite chair at Epoch and my own bed, as well as to enjoying time with my community and my family without worrying about how much time things are taking or my to-do list. I've given in to my body's need for rest and medication. 

In giving up and giving in, I've discovered that the time it takes to get places seems shorter when you're not stressing and rediscovered over and over again the importance of being in the moment, especially with those you care about. I've experienced more joy amidst my misery than I do when I'm constantly stressed about going and being and doing. 

And I got to hold a chinchilla.


Because of the need to give up and give in, I completely enjoyed watching the looks on children's faces as they got to touch and sometimes hold cuddly and not-so-cuddly creatures during a visit to our homeschool co-op by Critter Caravan. If I was feeling better, I may have worried more about making sure classrooms were properly cleaned, heat turned down, and the like rather than taking a seat and experiencing a wonderful program through the eyes of a curious group of students. I would have missed out on squeals of both delight and uncertainty as we all got to learn about chinchillas, bearded dragons, hissing cockroaches, chicks, bunnies, snakes, hedgehogs, and guinea pigs.

It seems that feeling under the weather can come with its blessings. 

Wednesday, March 29, 2017

Celebration Vacation



It wasn't so much of a vacation as forty-eight hour stay and fifteen hours of travel between 3pm Friday and 6am Monday. 




We got to take part in a wonderful 90th birthday celebration in Pennsylvania for Grandma Jean, my husband's paternal grandmother. We got to visit with grandparents, cousins, aunts, and uncles who we rarely get to see and spend a glorious 74 degree day playing outside in the morning and celebrating in the evening.


We learned some family history, played games, explored a cemetery, took a drive to the top of a mountain, and listened with interest as Grandma Jean told us about growing up in Pavia, PA, without running water or electricity - a small village that now has those things, but is devoid of cell phone reception. 



My husband took two days off for this trip, which normally would have me stressing over how much time off he has left between sick days he's taken already this year and our upcoming time at Camp Calumet for both Spring Cleaning weekend and over two weeks at Family Camp. But I'm letting go of anxiety over how much time off he'll have and we'll make things work later in the year, even if it boils down to him taking a day or two off from work without pay for our Thanksgiving trip to PA to visit family. I'm making room for invaluable time spent with family by living in the moment and having faith that all will work out in the future.