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.
I promised my brother Lenny that I would not write a post today about his surgery. I promised I wouldn’t tell you that today the doctors are going to open his head and try to resolve three aneurisms. I promised him that I would not write and ask for prayers or give you play by play updates. He asked me not to post anything at all. Why? Because unlike me, he is a very private person. And he doesn’t like or want or need all of Facebook knowing his business or seeing what he looks like in a hospital gown. Me on the other hand, I want you to know that I had a donut for breakfast and ice cream for dinner and see every new outfit I’m wearing, even if it were to be a hospital gown. We are much different people, Lenny and myself.
So out of respect to him, this post is not about Lenny, it’s about ME. As Toby Keith sang, “I wanna to talk about me, wanna to talk about I,…”
Today I need your prayers and your thoughts and every good vibe you can send.
But hospital surroundings are not kind to the senses and not a fun place to spend the day. There are loud buzzes that make you jump and doors that open and close loudly and keep you out. Because behind them lives hang in the balance. This is not Disneyland with fun colors and rollercoasters and the smell of cotton candy. Everything is white or grey. The smell is a mix of cleaning supplies and cafeteria food. And I believe they have purposefully made waiting room couches uncomfortable. Why, I do not know.
But this is my job today. As a sister, as a friend.
I saw a bit of the good last night, when I looked into my brother’s eyes and I told him I loved him. I mean really looked. So often we tell people casually that we love them or care about them as they are walking out the door. “Love you, bye!” But last night I looked in his eyes and made sure he knew how much I loved him and how thankful I am that he saved my life. (And I also told him that if the unimaginable happened and he was no longer walking on this planet that I totally expect him to rattle coffee cups to let me know he’s okay.)
Lenny truly did save my life. I was only twenty-six when I sat in his kitchen table in Garfield Heights Ohio in the small bungalow that he and his wife Gail and two kids, Nichole and Chris, lived in. He was just a few years sober in his own journey. At that table I cried. A lot. And I told him how scared and confused I was and how very much I didn’t think I wanted to be alive. And he listened.
He told me things like, “Today you are exactly where you need to be. You are doing all the right things by being honest and admitting that you are powerless and that you need help. Life is a journey and this is part of it.” These were new concepts from me at the time, but they sunk in deep and have become a part of my belief system forever. He also told me, “I over E when it involves C. Intellect over emotion when it involves a crisis.” This will be a hard one to follow today, but I will try. I sat at the table too many times to count. I memorized the shape of the grain in the wood. And I cried and grew. Lenny was a rock and a pillow. He became the person who would stand strong and hold me up, but he also became a soft place the land. A place where I could rest my weary mind and broken heart.
We all have people in our lives whom we love. And then we all have ‘those people’.
Lenny is one of my soul people. And I need God to guide that doctors hand this morning. I need his doctor to have had just enough coffee but not too much. I need the doctor to be having his best day possible as he operates on my brother’s brain. This is my prayer this morning. This is my surrender. I know that it is out of my hands. I know that I must let go and trust that by the time the sun sets today, Lenny’s three aneurisms will be resolved and I can go back to finding yet another ice cream place to eat at for dinner.
In the end, I’m sure Lenny will be angry about this post. But I consider it repercussion for all the childhood angst he put me through. For putting rocks in my stocking on Christmas morning and flipping wet kitchen towels at my thighs as I walked by and for holding me down and tickling my stomach until I cried. Paybacks are a bitch.
Or maybe you need to be sitting next to someone who will hold you in their space and love you.
I risk Lenny’s disappointment today because I know that you, my extended family, will sit with me today at this table, in this moment, in the midst of my fear and tears, and be rocks and pillows. Look into the eyes of your soul people today. Tell them you love them. Xo
P.s. We are on the hunt for cool and unique hats for him to wear this summer. I know, hats in the summer – who scheduled this wardrobe challenge?
If I had to give us, (the people in my family) a grade on how we performed yesterday, I’d give us all an A. An A for choosing to stay present. For being in the moment.
I’m not going to lie; it was a hard day for me. To begin with, I’ve never been a big fan of Mother’s Day, since I lost mine so young. Every year the day seemed to be a reminder of my failure as a daughter, because I wasn’t nice to my mother. And I know that. (I even have a tape recording of me calling her stupid. Sigh. Someone should have smacked me repeatedly.) I was young and selfish and I didn’t know how to love her. And then, she died before I could grow up enough to fix any of it. And then, after I became a mother, the day reminded me that I was again failing. Failing my son James.
It’s all a little better now. In the way that a few days after a hard work
out you are less sore. Things still hurt, but you are able to go up and down the steps without moaning. I “get through” Mother’s Day.
But yesterday, because James’ birthday fell on Mother’s Day, we got to focus more on him. But James, because of his disabilities, doesn’t care that it is his birthday. He would just as soon stay in his room and watch Little Einstein’s on his IPad. But letting him do that doesn’t feel good to us, so we pull and prod him to celebrate.
We did all of James’ favorite activities; we swam, we ate yogurt, we played Duck Duck Goose. His cousins Nichole and Joe and Chris gave him knuckle balls and piggy back rides. He even (miraculously) showed interest in opening up a present or two, but wanted nothing to do with the candles on his Mango Key Lime Pie. But over all, he did good, in what I know (because of the Autism) were incredibly uncomfortable situations for him.
We took James’ lead and for the day, and we didn’t let the uncomfortable situation keep us in our separate mental spaces. We came together. Instead of the awkward pulling-apart that happens when a family goes through a divorce, all of the adults acted like adults, put aside our own agendas, and laughed and sang and loved.
James got lots of presents, but as always, he gave more than he received. He served as our teacher and our guide and kept us all present. I’m guessing that if every family going through a divorce had James in the middle of it, there’d be a lot less anger and sadness. It’s really impossible to be angry when someone taps you on the head and says “goose”!
Happy 10th Birthday to the love of my life. I am honored to be your mother and will continue to strive to be better at taking care of your soul.
You were not stupid. You were kind and beautiful and doing the very best you could at a very hard job. I know that now. Happy Mother’s Day mom.
Here’s a short video we did on what the memoir is about. It’s CRAZY to think that this book started just a few years ago on this blog and now it’s in bookstores and on bookshelves all over the world!
Take a look…someone with something extra makes a special appearance!