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.