From the backstage door I could hear the screams and feel the energy. It was Saturday night and at least two thousand people filled the Biergarten at the Mt. Angel Oktoberfest in Oregon, ready to dance and drink and celebrate. And for me, it turned out to be more than just another gig… it was a homecoming of the heart.
In the mid 2000’s, for four years in a row, I was the headlining act for the Mt. Angel Oktoberfest. Myself, along with my band The Boxhounds, rocked the stage by playing everything from traditional polkas to cover tunes done as polkas and of course the expected chicken dance. But in 2008, for reasons that I did not understand, I was not asked back. It made no sense to me at the time and I was hurt and angry and confused. But that’s how it goes sometimes.
At that time in my career, my son James was just two-years-old. He was born with Down syndrome and later diagnosed with autism, and the new life I found myself in shook me to my core. I had an extremely difficult time coming to grips with his disability. Depression moved in and for years I felt as if this black cloud of darkness engulfed me. That made it almost impossible for me to entertain at the level and standard that I and others expected. It got harder and harder to be on stage. Especially when I would see someone on the dance floor with a disability. The only way I could get through was just to ignore them. I know. That sentence was hard to write. But it is true.
I am not proud of that – but my fear was running the show. I was shallow and self-absorbed and living in darkness. But the writer Barbara Taylor Brown says, “New life starts in the dark. Whether it is a seed in the ground, a baby in the womb, or Jesus in the tomb, it starts in the dark.” And so it was for me, that from that darkness, a whole new life was birthed.
Not getting called back to play Mt. Angel made deciding to get off the road a tiny bit easier. And once I did, I had the time to put my energy where it needed to be.
I felt like I was being pulled and pushed and molded, but years later I knew that in many ways I was better. Not perfect, but better.
So when I got the call this year asking me if I would return to Mt. Angel I was both excited and nervous. I feared so many things; could I find a band that would measure up to how I sounded the last time I performed? Would the eight years of wrinkles make me feel and look old? Could my body even handle so much playing? (And let’s not even talk about the ten pounds!) But I said yes to the call, even with so many questions, because I knew that I wanted to be back. I needed to be back.
And so after eight long years away, I was back. And as I walked onto the stage Saturday night with a brand new band, and as we hit the first note of “Mama’s Got a Squeeze Box”, I was overcome with gratitude. There are moments as an artist that the stars align; the audience is engaged, the band is in sync, and I wore the right shoes. I thought, “I don’t’ think it can get any better than this moment right now!”
But then… I saw her. Megan. An adorable red-head thirteen-year-old girl in the middle of the dance floor, who had Down syndrome. She was dressed in a German dirndl, singing at the top of her lungs to our music. But this time – this time – I didn’t look away. Instead, I couldn’t help but watch her, pulled in by her smile. By the end of the first song, I found myself holding back huge tears…of joy. I wanted to yell out to her, “Dance Megan, dance! Make a scene! Show the world who you are and why you are here!” I watched her do the best version of the chicken dance I had ever seen and finally, I just couldn’t help myself, I grabbed the microphone and to that crowd of two-thousand people I said, “Hey Y’all, I know we are all here to drink and party, but I just got to take a minute and say hello and thank this beautiful girl on the dance floor. You see, I have a little boy at home who also has Down syndrome and they are the most precious people on this planet! Megan – thank you for reminding us all what life is all about!” The audience let out a huge cheer and she waved like she was just named homecoming queen.
Thank you Megan for reminding me that I made it out of the darkness. To the board of the Mt. Angel Oktoberfest, thank you for NOT hiring me years ago and thank you for bring me back. To the guys that worked their asses off to learn my songs and entertain along side of me; Jason Nix, Duran Crone and Drew Lambert – you are more important and appreciated that you will ever know. To Jim Hoke, who owns the Mt. Angel Sausage Company – your constant belief in m helped bring me back!
Sometimes, God and the universe and the day surprise us. We don’t get what we dreaded or worried about. The check doesn’t bounce, the stain comes out of your favorite shirt, the rain holds off just long enough, or your special needs child does something so off the charts you can’t help but know that God said hi.
New video blog on painting my new place. Sadly, James went from bad to better to worse. If you listen closely at the end, you can hear him crying in the background. So I spent the day holding him while Mike painted. Stay tuned for the end result! Xo
My sister Karie and I went to my brother’s home the other night to start cleaning out his things. I have dreaded this night in some ways, but in other ways I was so excited to be amongst his belongings. I was hoping and praying for a huge spiritual moment, one where I could feel his presence. I longed for a holy experience and one that would flood me with emotion. But that is not what happened.
My brother has been single since his wife died when they were just twenty-eight years old. He’s also been sick for a long time. So housekeeping was not high on his list of important things to do. And that’s okay.
As Karie and I sifted through papers and pill bottles and more pill bottles, with every shelf we cleared or box we opened, the dust just covered us. Before I knew it, there was dust in my nose, on my clothes and in my hair. We opened the window hoping the fresh air might help. It didn’t. We continued and I longed to find the hidden “gem”. You know, something wonderful like an old love letter or piece of art that he had been working on.
What we did find was normal stuff. File folders full of doctor’s bills and reports and cigar boxes that held rubber bands, tooth picks and hearing aid batteries. And on his wall there were several photos of my son James, next to a poster of his favorite band Little Feet and my nieces wedding invitation. On his shelf sat several Alcoholic Anonymous books. Pages falling out and lines highlighted. His bible. I picked up one, wiped off more dust, and held it close.
I sneezed and coughed to the point of gagging. I went onto the porch for some fresh air. I sat in a chair I had bought Lud just a few weeks before he died. And I remember him in that chair – in pain – and I got grateful again for the simple truth that he is no longer suffering. Both physically from his illness and mentally from his illness.
I couldn’t wait to get home to shower, to wash off all that dust. But for some reason, I didn’t. I let it sit on my skin and it covered me like a old worn-in blanket. It was only then that I realized that I did in fact find the gem. The holy experience. And it doesn’t always smell or feel like you think it should.
As I sit with my brother in hospice this week, I have done a lot of reflecting. There’s plenty of time to think while he sleeps and it gets harder and harder for him to breath. I don’t really know what I’m doing. I’m not naturally a caregiver. Actually, I suck at it. Us “self-absored artist types like it better when people rally around US and take care of us. But life and death has pulled me out of my comfort zone. It has summoned me to just show up. But I feel like a fish out of water, gasping for my next breath and wondering what to do. God gave me just enough strength to get in my car and drive here.
As Lud slept, I picked up a wash cloth. I let the hot water run over my hands and prayed. And I somehow I wiped my brothers face. I gently moved the cloth over his eye lips, helping to clean out the yellow-ish gunk that had gathered there. And all I kept thinking was, “God, I hope that someone shows up when this is me and helps me see.” (And that someone would please be sure to pluck my chin hairs!) And before I knew it, I had given him a really awkward, really have-assed sponge bath. I’m not sure you could even count it as a sponge bath. And then, I took the lotion that was on his hospital tray, and rubbed his dry spotted pealing arms and then his fluid-filled feet. I have never touched my brother like this before. Never. Hell, I’ve hardly hugged him hello or goodbye most of my life.
Holy. Sacred. Before I was finished, the tears that streamed out of my eyes were like I was being bathed in God’s love.
My brother Lud is sixteen years older than me. By the time I really remember him, he was a successful drummer in Cleveland, playing every club in town, six nights a week. He was an introvert and quiet. But he gained the nickname “Pops” because the young kids looked up to him. He was solid as a rock I’m told. “The best blues drummer inCleveland,” is what a visiting past band member told me yesterday.
Lots of other people have showed up this week. They too got out of their comfort zones and came to be present. They got the band back together. Members from the bands “Life” and “Street Life” and “What U Need” all came. And they told stories of past gigs. The one about the guy in the club who… and the time when Lud took th
at… and there was laughter in the room. So much wonderful laughter!
My favorite writer, Anne Lamott, calls is “carbonated holiness” and she is right!
When everyone left, and my brother was back in bed, propped up on pillows to help ease the pain of his bed sores, I asked him if he was scared. “Not really,” he mumbled. “Okay, maybe a little.” I heard all the past “Pentecostal, charismatic” voices in my head nagging me saying, “You better LEAD him to Christ or he’s not going to go to heaven.” And then the Catholic childhood voices chimed in with, “you should get a priest in here to give him communion and his Last Rights or he’s going to spend a lot of time in purgatory.” And then… I stopping listening to all of them. I quietly prayed about what to do and listened to my gut, in which I heard God say, “Just listen to your brother.” “Lud, are you afraid to die?” I asked. “Maybe a little” he said. “Lud, do you know you’re going to a better place when you leave this earth?” “Yes, I do.” And those three words..were enough. It was real. Honest. He didn’t have to say a correct sentence, or swallow a piece of bread. His own words, delivered on shallow breath with scared childlike faith, were enough.
I cut my toenails today. I know, why in the world would anyone write a blog about cutting their toenails?
And sometimes doing the small thing gives you enough strength to keep moving and maybe even do a bigger thing, like shower. And there’s something about taking care of your feet, you know, the base, that can be empowering too. I also cut James’ toenails, which because of his Down syndrome and Autism, is like riding a bull for waaaaay longer than 8 seconds. The good news is that I burned 542 calories in ten minutes.
I HAD to cut my toenails because I have a busy week and people might see them. Tomorrow I get to share James’ story at a conference in Nashville for the TN Department of Mental Health. I can’t wait! On Wednesday I will have a computed tomography angiogram (CTA) scan of my brain. Yeah, they’re gonna shoot a bunch of dye and radiation into my arm and arteries to take a look at my aneurism, or… as I have come to loving refer to it as the #$%@ing aneurism. And there’s a whole lot of other stuff going on as Jim and I continue to negotiate taking care of James as single people, which just totally sucks.
But through it all, I do recognize that my current problems are so small compared to what is going on the world; the homeless person on the corner who is hungry and sad, or my television friends who lost a colleague this week, or the country music star who just this morning lost a son in a tragic boating accident. Not to mention the loss in Dallas. That’s grief. That’s big horrible ugly grief.
In the midst of all of this, my heart is also heavy because I’m losing a sibling. My oldest brother Lud is battling liver cancer, and the cancer is winning. (I’ve talked a lot in this blog about my brother Lenny who just had brain surgery. I’m happy to report that he is doing great and back to work this week!) But my oldest brother Lud is coming to the end of his life. His body is dying in front of my eyes. His arms are bruised. His legs are skinny and brittle. (Thankfully, my sister Karie cut his toenails…that would’ve have been too big of a stretch for me right now!) But yesterday I mustered up all the strength I could to stay present, which is hard for me to do in the midst of my own fear and I sat on his bed with him. I held his hand, as his sweet dog Stamper laid by his side, and
This morning this all seemed like a bit much and the pain made me want to eat anything resembling sugar, cry continuously and wonder where God is in all of it? But a friend sent me a text checking in on me and he told me to read Isaiah 41:10; “Don’t be afraid, for I am with you. Don’t be discouraged, for I am your God. I will strengthen you and help you. I will hold you up with my victorious right hand.” Or… in my warped interpretation, “Lynn, relax. I’ve got this. I’m not going anywhere. Lean on me and I will make you strong. I’m in charge. Do your toenails.”
P.s. This photo is totally James… eating Yogurt, which is all over his face, watching his iPad, and no way in hell gonna smile for the camera!
I was supposed to be in Bermuda today. Thirty years ago, on our honeymoon in Bermuda, we met a couple at dinner one night who was celebrating their 30th Wedding Anniversary. I remember thinking how great it would be if Jim and I were able to spend our 30th Wedding anniversary their as well. I carried that tiny thought with me for thirty years. But today, I’m not in Bermuda.
If you’ve heard me share my story about James, then you’ve heard me I say, “I could kick and scream and stay angry over something little like having a broken dryer or having a child with Down syndrome. Either way, without acceptance you stay stuck.” And so today I’m reminded that the same principle applies to divorce and brain aneurysms. Kick, scream, be angry – or get grateful and keep moving. My choice. Henry Wadsworth Longfellow put it this way,
Yesterday, the neurosurgeon confirmed that the aneurysm is in the very center lower part of my brain. They will do a CTA Scan on July 13th with dye to get a better look and decide what to do to resolve it. I still feel an enormous amount of peace. And receiving all your messages and texts and phones calls have really helped! (Big hugs and thanks to you my FB family, because of you I’m down to one nap a day and I actually showered yesterday!) Even so, I have reminded God that I’m pretty sure I’m nowhere near as strong as She thinks I might be and to kindly reconsider sending any future curve balls my way. Then She laughed and gently implied that it’s Her plan not mine and it’s best if I just… let it rain. Walk it in. Jump in the puddles. Taste the raindrops on my tongue.
Yesterday my dear friend gave me an entire box of home-made toffee, otherwise known as crack. I ate half. I think today I will eat the other half, at the pool, watching James swim. Not Bermuda, but yet so beautiful.
I quit listening to the doctor after he said,
Before last week I didn’t even know how to spell aneurysm, now today, I am coming to grips with the fact that there is one in my head. Lodged deep in the center of my brain.
The only reason I’m writing this blog is for my own sanity. It is not for you. It is not to gain your sympathy. And I know that most people would want to keep something like this totally private.
Depression is a real monster that I battle, especially when I find myself in three doctors offices’ in one week. But I’ve learned from my past journey of having a special needs child, that honesty, vulnerability and being wide open is the only way I personally survive the darkness. It is the only way I don’t crawl into a hole, take three naps a day or gorge myself with Oreo’s. (Okay, I may have still gorged myself with Oreo’s!)
I have three brothers and a father who all have or had brain aneurysms. So, it was suggested by one of their doctors that this might be heredity and that I should get an MRI to make sure I didn’t have them. I truly expected not too! As I laid on the exam table I thought, “They are not going to find anything… except maybe the word CRAZY etched in somewhere.” But then, as I sat in the office of Dr. Callahan, the neurologist, and looked closely at the 3D imagining of my arteries and veins, there it was…. a very small aneurysm. Very small… and yet in the worst possible place. Did I mention it is very small?
I left the doctor’s office with a follow up appointment for an ultrasound and an appointment with a neurosurgeon. I pushed back the tears as I drove to a speaking engagement I had committed too for the Mental Health Association of Middle TN. It dawned on me for about five seconds to cancel, but then I knew that what I needed most was to be surrounded by people – and what better folks than those that work in the mental health field!
And it did! The hugs and tears I shared with the attendees after my talk empowered me and gave me the tiniest bit of faith to believe that in the end, this too will be okay. (Even though right now it feels down right shitty and like I can’t deal with one more thing and even eating a dozen Krispy Kreme donuts might not help!) I have yelled at God and screamed and kicked and reluctantly found myself at something sort of resembling acceptance — but still a wee bit angry.
In the deepest part of my gut…in the place that God speaks to me and that I have learned to listen too as closely as I can…
I am not afraid. I do not think this is a big deal. I do not think this is going to kill me. I do not even think that they will necessarily do anything about this very small aneurism, except maybe watch it. (Or maybe that’s just my hope! My big hope!) I will know more next week.
What I do know and feel is this; life is ridiculously fragile. Things can change in an instant. I am reminded once again that
And in the end, when it feels like you can’t take one more breath or one more step, God and the universe ALWAYS show up and breathe light into the darkness.
James crawled into my bed as I tried to nap today. He played with my hair and I let the tears fall onto my pillow. He sang “E-I-E-I-O” and before I knew it, he made me laugh. And the light came in.
A few months ago I wrote a blog about James running head first into the glass wall at The Apple Store. Yesterday, I understood how he felt, because this time, it was me.
James is fast. And as we were leaving the YMCA after his first day at Day Camp, he got away from me. Within seconds he ran out of the automated glass doors, headed for the street. I could see him from afar, as I sprinted to catch him. But when I reached the doors, they did not open as quickly as my body needed them too, and before I knew it, I was on the ground. The impact shook the glass and it made an awful sound. I managed to get back up and somehow make it to James before he made it to the road. But then, I collapsed on the hot cement. Holding James and my throbbing arm. Thankfully, it was my forearm that caught the brunt of my impact, and not my head. (Although, maybe – as they say – it would have knocked some sense into me?)
As James and I huddled together near the curb, I started to cry. Actually, I wept. I sobbed. Like a baby. James has a hard time when other people cry, including me, so he moved in closer. He touched my cheek, stared at me and said in a concerned tone, “Bobby?” Within seconds several of the the YMCA staff came running. “Please let us call the paramedics to look at you?” they begged, confirming my embarrassment of how loud and hard my impact must have been. I refused because deep down I knew my arm would be okay.
But as the tears poured out of my eyes onto the hot cement, I knew exactly what was happening. This display of emotion had nothing to do with my hurting arm. It was weeks of buried fear and grief finding its way out, which it always does.
James and I spent last week in Cleveland visiting family. And although it was perfect in a million ways, mostly because he got to spend a ton of time with his cousins, it’s always hard for James to be in a new place. That unfamiliarity resulted in a launry list of interesting events; me being awoken one morning by being thrown up on. Another morning by being peed on. One day finding James completely… and I mean completely… covered in blood. And lastly, when trying to get him to the restroom at a truck stop somewhere in Kentucky, pieces of poop fell out of his pants like someone spilled a box of Milk Dud’s as we ran down the automotive aisle. All of these stories deserve their own blog posts, so I will save them for another time. Suffice it to say, we are both out of sorts. We returned to Nashville, to our new odd normal, only to start the day on Monday with even more newness. The first day of summer camp for James. Bad planning on my part.
As we walked/carried James to the registration desk at the YMCA, there were more new people, new sounds, a new tent. He was overwhelmed. We left him in tears, knowing that he was in good hands. But remarkably I didn’t cry. I knew I had a job to do and a busy day ahead.
But as I stepped into my closet I felt lost. It was if making this first step was the hardest thing I’d done in years. How do I even begin to sort through all the memories? So many clothes, too many shoes, the sweatshirt that Jim and I bought together while on vacation in Bermuda for our honeymoon. All the years of Grammy outfits that represent so much hard work and passion and heartache. What should I keep? What should I take to Good Will?
And then I remembered something a friend said to me earlier in the week. We were talking about the BIG questions in life… you know… the important ones about faith and love and God. “Is God in control? Are we? Is the Universe? Or are we all just spinning around on this big ball of dirt left to our own devises?” And he said,
What? You mean I don’t have to know everything today? I don’t have to have all the answers?” This was sooooo comforting for me. I felt like someone had lifted a ton of bricks off my shoulders and then showed up at my door with Vanilla Double Stuffed Oreo’s and cold milk.
Sitting in my closet, his words played over and over in my head. “Start with what you know.” Maybe this can apply not only to big questions but little ones too? I looked at my clothes packed in like sardines. I pulled out my favorite ivory sweater. “I KNOW I want this. I know come fall this will comfort me.” And so it began. Sweater by sweater, shoe by shoe, I lovingly packed each box and before I knew it, there were two boxes, then three. I got a text from my niece Jill in the midst of it who said,
I pulled a few things out of the box and moved them to the Good Will pile.
She is right. This will be a long journey. But I know each journey ends in new place; either physically or emotionally. And when I unpack this box in a few months I have to believe that I will be in a better place. I reflected that it has already been many years since I collapsed in this closet. Into a pile a dirty laundry, screaming at God because I had no idea how in the hell I would accept what I had been given; the responsibility to love and care for a special needs child. In some ways, I know that I have grown beyond my wildest dreams into a person that can handle such an important task. But sitting on the hot cement outside the YMCA, after barely grabbing James before he reached the street, made me feel scared and vulnerable. Sometimes crisis and chaos happen because it’s the only thing that makes you dig into your soul and see what’s really in there.
It was as if hitting that door shook loose all the anger and hurt and fear that I have pushed down for months, resulting in a river of tears, but uncovering more strength than I knew I had inside of me. I picked James up. We kept moving. I kept packing. Left foot, right foot, breath.
Back home, James quietly played in his room with his iPad (finally in his comfort zone) and I headed back into the closet. St. Francis of Assisi said,
I packed for a few hours and gradually gratitude entered in the space left behind from the packed sweaters. I thanked God for the past journey that changed me. That He did not leave me where I was, when I was scared and fumbling around in the closet so many years ago. That He did not leave me stuck in my pain and fear, but He somehow pushed, pulled and guided me through. Someone asked me once, “Why do you think you had to go through such a hard time to get where you’re at today?” So I could pack my closet.
My arm is fine. Just a bit sore and black and blue. If I had let the YMCA staff call the paramedics, I’m afraid they wouldn’t have known how to treat the real problem;
But over the next few days I know the swelling will decrease and the mobility will return, allowing me to lift and reach and stay open. I’m trusting the same will happen to my heart.