The Wind Chimes

"Tis grace has brought me safe thus far, And grace will lead me home."

-John Newton

This isn’t the first time I’ve shared the first part of this story with you, so bear with me, please. There will be a point, in the end, as there always is. 

Several years ago, I fell out of bed as I tried to transfer to my chair. This wasn’t just any other fall, though. I weighed only seventy-five pounds, slept in only forty minute spurts, had a PICC line in my arm, and was, well, dying. I landed on the hard, cold wooden floor of my, then, apartment. I tried about forty times to hoist my broken and just nothing left to give body back into my wheelchair, but learned this was an exercise in futility. Not only did my bones come crashing down to the floor, I pulled my IV, and all other sorts of body shutting down things occurred, right there all over the floor.

It was January, and the temperatures were well below zero. I didn’t have a phone nearby and scooting across the floor, while paralyzed and with open wounds from infection, wasn’t an option. And, at this point, I didn’t want to call anyone else for help. Asking for help becomes exhausting. Most people expect something in return. And I grew a little cold towards all I had to carry, in addition to the paybacks for help. We are all human and I understand expectation, but expectation is right up there with envy and gluttony, and all the things that bring us down to an inhumane level. I needed to either, figure out how to rise into my chair all on my own, or just forget it. 

Belle came into my room. I gave her a big hug and asked her to return to her couch in the living room and promised I would cuddle her later. I didn’t want her to witness anything painful. I knew the reality of my options - get in the chair or just be at peace with the end right there on the cold, wooden floor. After several more attempts, I gave up on the trying. I propped up my legs and pulled them tightly to my chest. I leaned my back against my metal bed frame, had a good cry, and I screamed for a few minutes. And, then one more time, I screamed and looked up and cried, “You just have to help me, you just have to help me. No one else can help me. You just have to help me.”

I never expected an answer. I felt I was on that floor for a reason. I felt ashamed and devastated and all the words that make us feel less than. I knew this might be my time because I felt unworthy. Unworthy of help. Worthless was a word I knew well. But, as the up above always does, I was reassured. I felt a tiny bit of grace. A calmness took over. Maybe it was the exhaustion, maybe it was the screaming, maybe it was the pulled PICC line and loss of blood dripping down my arm, I don’t know. But, I took a few deep breaths, and I tried one last time to lift my shattered body into my own wheelchair. And, I did it. In one instant, I positioned my body one more time, grabbed a hold of the wheelchair in just the right place, and lifted my body, so gracefully it caught me off guard, and landed square in my chair. I looked up, again and said, “Ha, well thanks.”

I took a shower, called a nurse, and everything was put back in place. The next day, I called a friend and told him this story. And, he said, “Oh Sarah. Didn’t you just want to play Amazing Grace at full volume and sing your heart out?”

Fast forward to today. I wrote a post for you about morning practice and how it changed and changes me. How spending those first five minutes I wake up in meditation, or prayer, or both, sets my entire day. I don’t mean I stop the bad stuff, the falls, or the chaos. I mean I learn to find a bit of grace when I am on the floor - so to speak. I learn I will be okay and can pull my body back into my chair. I learn I am always given grace. Grace is mine, grace is yours, grace is ours. 

Morning practice of the mind - whether it is prayer or meditation - whatever anyone chooses, is a crucial part of acknowledging grace. I know when I skip it because the falls are harder and more devastating and I forget about looking above and asking for help. I think I am all alone. These grace muscles, just like my morning arm and body workouts, need to be developed, too.

Today was rainy and cold, in May. All signs might point to hopelessness. The last few weeks I felt on that floor again. My body slipped backwards, again, and because of so much stress and so much illness, again, I couldn’t chew or swallow food. I stopped looking in the mirror because I couldn’t stand the sight of my frail body, again. I continued to remember that night on the cold floor and wanted the memories to stop. Yesterday wasn’t as bad though. I gained a few pounds and the doctor said I was healing, again. This new jolt of hope, despite the cold and the rain and the greyness, means today wasn’t so bad, either.

And, then the grace happened. And, today went from not so bad, to miraculous. Just like that paper-thin paged book I pick up, every single morning and read and study called, A Course in Miracles, promises will happen. Today was all about grace. 

Grace shows up. We notice her when we need her most. Although, we may fail to notice her on the easier days, she shows up everyday in the tiniest ways. She’s always there, begging us to notice.

Like today. The rain and the cold urged me to work on the garden. Well, research ideas for the garden. I researched a fence and the small garden I could plant and grow up against it. I researched a hummingbird feeder, a bird bath, and wind chimes. I found some wind chimes I liked and decided to read the description. Here is what I read.

And then chills covered my body. Not even a week ago, I told Clodagh the story of John Newton. I told her this story because it is one of my favorites. This story is grace. We can turn our boat around at any time. We are always in a state of grace, we just have to finally realize it, and turn the ship around and head home.

Reading that description of the silly wind chimes was enough chills for the day. Enough recognition of grace. I sent Clodagh the description. I sent it, accompanied with a text in all caps, “REMEMBER THAT STORY I JUST TOLD YOU, LOOK AT THIS!”

Clodagh called almost immediately. She is on a much needed vacation with her children. She said, “Sarah, I am going to send you a photo of what I bought you in the hotel gift shop, last night. I bought it because you told me about Ashlea and the magnets. I never buy magnets. I hate fridge magnets. But, you told me you bought the magnets to hang up stuff from her kids, so I thought, alright I'll look at fridge magnets. So, this is the one I chose, just for you. It reminded me of the story you told me about John Newton. I just had to get it for you.”

Yes, that is the actual magnet she bought just for me. Because I told her the story of the guy who wrote Amazing Grace. She bought it well before I researched the hummingbird feeder and the fence and the flowers and the wind chimes.

Grace. She will always shows up - oh she shows up. And, just as my friend said the next morning after that night on the floor, “Don’t you just want to play Amazing Grace at full volume and sing your heart out?”

Yes, yes I do.

Get up. Do the morning practice. Do the painful workouts. Pull yourself up into your own chair. Grace is mine, grace is yours, grace is ours. Grace always shows up - even on the grayest day in May. She is amazing, that grace. Oh yes she is.

Let it Be.

Out of the blue, because he answered an emergency call from the hospital today, I learned I endured and recovered from 'complete renal failure' this time around. Intravenous vancomycin can do a number on the kidneys and I knew something was wrong when my ears were bigger than my head and all sorts of other 'stuff' happened. 

But, my doctor, he only supported and protected me. He absorbed the fear and the worry. Oh, he helped me and prescribed everything in his power. He recommended I start drinking tomato juice and all kinds of natural things he knew I would respond to and follow through with - except the Gatorade. He knew that was a long shot because of the sugar. He knew I wasn't down with the sugar. 

My point is, my doctor absorbed all the fear and the worry so I could do the healing work. He made sure I felt okay. He made sure I knew everything would be okay, even if he read medical reports that might say otherwise. I'm not trying to say he broke protocol or anything of the sort. What he did, was above and beyond. He saw ME. He saw the girl who still set her alarm at 5am, even in the hospital. Even with the giant ears and the straight blood coming out of places blood should not exit. Later, he would say, 'that 5am meditation stuff I read in your hospital notes, that impressed me the most.' I never knew any of this until the exact right time. He took on the fear so I could do the work. Think about this. An actual person who took an oath to 'do no harm' doing his job and even more. Some people say doctors do God's work and I've always been a skeptic. A skeptic, because they are so profoundly human and deserve this caveat as much as the rest of us deserve it. But, this doctor, has changed my mind a little bit. This doctor, MY DOCTOR, made sure I would be back again to plant these silly flowers on my deck. These flowers I was in the middle of planting last year when I heard the words, 'go to the ER right now.' 

The garden and deck and window box plans are all written out and ready to go and ready to be planted in the coming weeks. Hot pink and orange and a hummingbird garden out back and all orange and purple out front. And, of course, the Dahlias in pots and the awe-striking creeping Jenny's as spillers, wherever I want them. You see, I am allowed to live and plan and feel joy and heal and all the things, because someone absorbed the fear and the worry and all the don’ts and can’ts for me. 

This is what God or anything we trust, and you must believe me when I say anything. I am not just trying to be inclusive, I am trying to show you, our beliefs and our foundations are all connected, whomever we are. We are all worthy. We are all worthy of a foundation and a protector. However she or he shows up for us. Even in the form of a doctor.

My Alexa is so tired of playing the Beatles. I am on a kick, lately, because I tested what would happened if I asked her to play 'the Beatles' one day. By the way, this is the best part of Alexa, I ask her to play whatever comes to mind and she plays the best song ever. Every time I ask her to play the Beatles, she either starts with ‘Let it Be’ or ‘Blackbird.’ And, now, I wheel around the house and I sing both. 

When I find myself in times of trouble

Mother Mary comes to me

Speaking words of wisdom, let it be

And in my hour of darkness

She is standing right in front of me

Speaking words of wisdom, let it be

Oh, let it be, let it be, let it be, let it be

Whisper words of wisdom, let it be

And when the broken hearted people

Living in the world agree

There will be an answer, let it be

For though they may be parted 

There is still a chance that they will see

There will be an answer, let it be

I went to church every single Sunday...after all, my grandfather was a pastor in the Lutheran Church and when he left and passed on,  he made sure I grew up in the Episcopal Church. I went to church every single Sunday. Until, I didn’t and I couldn’t. 

But, then, I, finally, learned church is just like anything else that teaches us the form or the ritual or the way. Church is just our vehicle to finally SEE and finally walk on the damn water.

We are all creators and healers and lovers and all the bits we worship and pray to. We are all children of our own creator. We are all able to heal and be healed. Showing up at church is an act of service or ritual. It is not an act of worthiness. We are all worthy. We are all worthy. Especially, on Sunday.

My point is, the gods or Buddhas or whomever will show up for you. Whenever you need them or don’t want to need them or are indifferent to them. THEY WILL SHOW UP. Your work is to heal. The ‘doctors’ can take it from here.

Plant the gardens, cook the food, love the babies, forgive the enemies. Those who are supposed to look out for you, so you can rise to your highest, they will serve you. Oh, they will serve you.

And, you will end up right where you started. You will end up in that very space you were always meant to be. You will end up knowing you are your greatest gift, your greatest advocate, and your very best friend. Even, if your doctor absorbs all the fear and and anguish and worry. Because he took an oath and he is just doing his job. Plant the flowers. Do your very best, because when you least expect it, you will learn, someone had your back this entire time. And, this someone, was only protecting you and absorbing all the fear for you. Just so you could plant your flowers in May and enjoy them in June and July and August, and if you are very, very lucky, all the way into September. He just wanted you to know you are the very essence of you. Broken and battered and bloodied and all. You are most impressive to him because you just woke up, even when you didn't mean to. 

Just Enough

It’s rare Saturday night in February. Rare because it is nearly seventy degrees, in Ohio, in February. All of the windows are open, along with the big doors out to the deck off of the breezeway. You’ve Got Mail plays for the hundredth time in the other room above the well-loved fireplace, that isn’t needed tonight. I decide to plant my Hyacinth bulbs. The ones I bought to force in little containers and fill my house with their beauty. I pause and look around and I have this moment when I feel this feeling. This feeling I chase. This feeling that all is right in the world, even if just for a minute. I am home. There is a breeze and life is so good. 

The next Saturday night follows suit. Only this time, it is snowy and cold and I am back in front of the fire. Ina’s French Onion soup simmers away on the stove and I am cozy and warm. And life is so good.

There are so many more of these mornings and afternoons and evenings. So many moments that force me to catch my breath and slow down so I can feel the inhale and exhale of life.

And as if life just couldn’t get any better, I hear these words from my doctor - We did it. We are on the field. We might just win this. - I know his lingo now. Sports analogies. And I know being on a field is a good one. I leave his office feeling I figured it out. I figured out how to heal. I will be well and life is good.

Ah. I know better. This isn’t the end. I don't know anything, really.

I come up with a lot of plans or schemes to heal. I write schedules and set alarms. I release negative energy in anyway I can and try to fill my body with only goodness. I eat Kale and recite positive affirmations in the mirror. I try to be generous and kind when I can and bow out or forgive myself when I can’t. I do whatever I can to heal these wounds and stop the pain.

I know better, though. Healing has very little to do with new and tough scar tissue and eliminating pain. Because the moment one wound heals, another will open, and, once again, there is pain. Pain never goes away. In the very same way life can be so good, it can also be so very painful. And, as if I am learning it for the very first time, I struggle with this great divide. I struggle because I know the most difficult and beautiful part about being human and fully alive is living, smack-dab, in the middle of this great confusion.

I woke up everyday at five o’clock in the morning to write to you what I learn about healing and I just couldn’t finish the post. Something was missing. I looked at the stories and the notes and all of the pictures and the quotes I jotted down from movies and books that popped up along the way. I tried to piece them together and write the lesson. But, I just couldn’t. 

Without warning, I ended up sick again several days ago. I grasped for air because my kidneys were having trouble filtering the antibiotics that I so desperately needed and, once again, I was in the bathroom begging for an answer. And just like so many of these bathroom cry fests end, I found a bit of peace, curled up in bed, and put on a movie. The movie was, Jackie. 

Some of the very best scenes in this movie are the conversations between Jackie and a priest. Without giving too much away Ill share my favorite moment. Jackie confides in the priest that she thinks God is mean and she never wants to wake up again, but she does anyway and she just can’t figure out why she keeps believing and waking up when life seems so painful and cruel. And the priest, among many other profound words, explains we live for the tiny moments of understanding and we are given just enough understanding to keep going. And then he tells her, "God in His infinite wisdom has made sure that it (life) is just enough for us."

Pain will never go away. This is not pessimistic or giving into hurt. It is wise. We can numb pain however we choose -  with food, with traveling, with gossip, or constantly escaping, or shopping or drugs or alcohol, or working too much, or trying to pretend we are so happy we are slowly dying inside. The truth is though the only things the numbing agents do for us is, just that, numb. And over time, we become so numb we realize we aren’t really living at all. We are just trying to escape and avoid one pain after another.

Living and healing go hand in hand. To be healed is to learn there is no life without pain. But, our job is create just enough or so much, interchangeably, that the pain isn’t so bitter. Because when I sit at look at all of these jotted down quotes, and little stories of joy, and pictures of all of the moments that were just enough, and I realize I am alive and well and life IS good, I learn just enough really is enough. In fact, life is pretty amazing and stunningly beautiful. And then, I can’t wait to get up tomorrow and keep going.

“The pain of life is pure salt; no more, no less. The amount of pain in life remains the same, exactly the same. But the amount of bitterness we taste depends on the container we put the pain in. So when you are in pain, the only things you can do is to enlarge your sense of things.... Stop being a glass. Become a lake.”

-from an aging Hindu master taken from Mark Nepo, The Book of Awakening

                                           

Finally, a Taco Tuesday success. Fish Tacos with mango salsa and cabbage slaw.

I, finally, bought a real camera and for the first time Belle's sweet face showed up in a picture.

Forcing bulbs and feeling a breeze on a rare warm February night.

Orchids and sunshine and Belle's chair pushed right up the window, just how she likes it.

Ina's onion soup that can heal the world in one bite.

Dinner Time

When I was a babysitter ,or nanny, without fail, my very favorite time of day was the, dinner, shower, homework, folding laundry on the kitchen island, time of day. I finished the round trip taxi service trips that led -  to and fro -  from dance to science club to theater practice, and then back, again. And, then, we all would gather in the kitchen, and fold the laundry, the laundry I tried to wash and fold between classes, while I cooked some form of dinner and all of these efforts, both the kids and mine, ended in the kitchen, where, we just chatted and laughed. We folded and cleaned and checked homework and packed lunches, but mostly we chatted and laughed. 

I chase this time of day. This dinner time with the gaggles of kids just dying to tell me her or his story. This time of day when all is right with the world. When the soup is simmering and the local news is on and the kids are asking questions about math and literature. I light up about the literature. And I tell them all about, Much Ado About Nothing. And, we continue to fold laundry, on the island, and pass the vegetables and assure each other, the brocoli is really that good. I feel like all is right with the world. This time of day is magic. This time of day is near the end, but not quite there. That last few bits of the day that are the very best. The last few bits that mean the very most.

Look. I mess up a lot. I mean, a lot. I cry a lot, too. I mean, a lot. Especially, in the last few weeks. And to try to combat these, so called weaknessess, I decided to create my own boot camp. A camp where I must show up at five o’clock in the morning or all was lost. And when my phone alarm rings, I sit up and get up and face this day. Even if I don’t want to. 

But, I get up, and I do it. Even when I don’t want to. Even, when it is much later than I hoped. I know I must start somewhere. So I start here. Whenever I get up, and I assure myself, this time is okay.

When I was twenty one, I had the rug pulled out of under me and I haven’t been able to find it again. I chased this rug. The rug is gone.

I learned I must weave a new rug. And, I don’t want to. I don’t want to weave the rug. I don't want to be a rug weaver. I don’t want to have to help weave the damn rug.

This new rug is jagged and messy and without a circular, perfectly round, ending. I, just can not put it on the floor for display.

So, I continue to weave. Even when I don’t want to. 

I tried, for the last several weeks, just to create a dinner time in my small, little home with just my dog. I folded laundry, while the oven pre-heated, and I turned on Ellen to hear the familiar chatter. I created, dinner time. Or, my very best version of dinner time.

I don’t know much about anything. But, I do know, we live for moments. We live for the feelings we once had or think we should have. The feelings. The feelings that make us feel alive.

Like dinner time with all the girls and boys and their chatter. A time I call, Dinner Time. I will never stop chasing this moment, this time. Dinner Time. 

This time, when everything is okay, was okay.

When, for a few minutes, all is right in the world.

I want to create this time over and over and over, again. The chance to begin and create and love and begin and create and love again, and again, again, and again. And again.

No boundries. No limitations. Just dinner time followed by bed time, with the anticipation of getting up and doing it all again. And, meet up, at the kitchen island, and fold some laundry and chat about the day, with the anticipation of doing it all over again, tomorrow. 

Dinner time, with the kids, or the dog, or Ellen, or just me, easily, my very favorite time of day. Easily.

This is love. The smallest moments. Getting to experience all of it...especially Dinner Time.

Big Foot

I sit here in front of this fire and try to write to you and, with words, paint the masterpiece that was my week, last week. It wasn’t perfect, but it was good. So good. And, I don’t say, so good, very much. I feel like it might jinx everything and anything. So, I don’t write about the good, much. 

Tonight, though, I decided to get honest about the good, too. And tell you why I loved this past week and all its twinkly lights.

But, I couldn’t stop laughing. Like, belly laugh, goofy, snort laughing.

I was thinking about the last five minutes of the night, last night. I was in my car, chatting and shivering because the window was down. Ashlea, was also shivering, and holding Will, and we talked quickly because of the cold. But, as you know, we had to talk. I told her, for whatever reason, I picked up toys and noticed a big, toy gorilla. And, I, simply, said it, the gorilla thing, in a list of things, a list of the evening’s happenings. Ashlea doubled over in laughter. She is so tickled that she has to give me multiple choice super hero costume quizzes, while I wrap gifts and is, equally, tickled that I, familiarize, Hamilton, the musical, to her by way of the Disney movie, Moana. This time, though, she was hysterically laughing because I, apparently, called Big Foot, a gorilla. And, for the life of me, I really thought it was a gorilla. And she finds this hysterical and I watched her double over, in laughter, while holding her toddler. I can’t stop laughing and smiling.

Ashlea and I have very different lives. What is hard in our lives is so very different. But, we make an effort to understand each other and celebrate each other, when we can, when we have time.

I can’t stop laughing and smiling. Not because I made a mistake and my friend corrected me, but because she, in two seconds, knew the gorilla I talked about was actually Big Foot. And, because, I will never learn all of these super heroes or characters. Super Heroes is its own AP class.

Tonight, I write to you to tell you things actually do work out sometimes. We all go through so many hard things that none of us understands. But, we could understand, if we tried, and make our friends’ lives easier, if we just learned that a gorilla can also be Big Foot. 

We all have different lives, but we can understand each other, we really can. And, then laugh, in the driveway, about our misunderstanding/understanding, and go home feeling loved.

Tonight, I wanted to write something different, but I can’t stop laughing and smiling. Oh, and I switched my nighttime ritual chamomile tea with the Aveda tea Ashlea bought me because she tried it and loved it so much and knew I would to and would understand how much she loved it.

And, I do. I love it, too. I understand. It is so good.

When Things Fall Apart

I am actually writing this is the morning, like I planned, like on my schedule, when I wanted to. I like to write in the morning because it is quiet and peaceful and begs for reflection and new beginnings. And, I am full of hope because I haven’t burned anything, yet, or broken anything, or rescued Belle, for the twelfth time, from that hydrangea bush she gets stuck in, every, single day. I like writing in the morning, there’s a lot of hope I might just get it right, today.

So, after I burned the tacos last Tuesday I fell into a rabbit hole of worry and doubt. I can live in fear, sometimes. I fear I’ll never get it right. I’ll never move forward, juggling and balancing all I have to juggle, especially, when I burn or break most of what I am trying to juggle. The eating healthy and the self-discipline will never work, things will continue to break. I start to believe, when the little things all fall apart it means the big things will, too. And, they will. And, all at the same time. And, it's all okay.

I haven’t written the past few days because when I get to this place, this place of inner chaos - a place where I judge my hope, my dreams, my failures, and my fears - I know it is time to get still. Other than posts that might read like, I did my chores, made some avocado toast, or drinking tea and turned off my ringer and the news, again, because I am sitting still, I couldn’t say much because silence and stillness are a practice and require breaks, from everything. Even when I don’t want to take the breaks. 

I used to think these stillness breaks meant there was something wrong me. I thought I was shutting down. I do shut down, but not because there is something wrong with me, but because I need a moment to know I will be okay. Stillness and silence allow me to hear my worries and my fear and my sadness and reassure them all...all will be well. I must reassure these parts of me that it’s okay to want to get it right. It’s okay that getting it right looks like a clean house and folded laundry and healthy food and a working body and meeting goals. It’s okay to want to act and speak and serve and love well and adhere to practices like mindfulness and meditation because I want to get things right, too. It’s okay to want to keep going and want to get it right, even, while I fail and break things, big and small. It’s okay to want to get it right, even when I don’t, most of the time. Stillness and turning off the noise and going to bed early and taking long, deep breaths reminds me that getting it right lives in all these things - joy and failure and sadness and hope and peace and chaos. Living through all of these things, not eliminating them or ignoring them, makes me better and more human. I can’t get it right, big or small. Clean the house or fold laundry or act, serve, love, and speak well, if I don’t do things for me when I need them most. I can not even attempt to give away what I do not have. Things will always fall apart - big and small - when I stop taking time to nurture and grow and trust the parts of me that heal and repair and begin, again.

If I calm down enough I clearly see, just like when things fall apart, little and big, things, also, go right - little and big. Last Monday, I was full of so much gratitude because I had a normal day, that ended with a fire, a bowl of truffle popcorn, and a cup of tea. Yesterday, little things fell apart and I didn’t fall down that rabbit hole. Instead, I did the dishes, wiped down the counter, shut off the noise, and made a bowl of truffle popcorn, a fire, and a cup of tea. I saw the popcorn and the tea sitting on the table and remembered how, a week before, I saw these things as a treat or reward for, mostly, getting it right. And, tonight, I see them as a reward for getting through things not going right and wanting to keep going anyway and still going to bed and still setting my alarm in the hopes that I get it right, tomorrow. Cause it is okay to want to be okay and get it right. It is okay to want these things, when things are going well or if they are not going well. It is okay to want to get it right.

I need to finish this cup of tea, pick up the house, and get on with the day. Oh, and wash and chop the cauliflower for tacos tonight. After all, it’s Taco Tuesday, again. And, yes, cauliflower tacos. I’ll let you know how this goes, even if I burn them.

You Can Turn the World on with Your Smile

Take chances, make mistakes. That's how you grow. Pain nourishes your courage. You have to fail in order to practice being brave.

-Mary Tyler Moore 

So, yesterday. I woke up, yesterday, willing to face the world. After all, I had a normal day. I was smug enough to think I had this whole life thing figured out.

And, then, I burned the quinoa. The quinoa, for the black bean and quional tacos, I found on Cookie and Kate. Yesterday, was Taco Tuesday, after all.

My very best days are when I can straighten up the house and get all the necessary things done for the day, have time for using my mind, and a little bit of time leftover for a walk, at the river, with Belle. After one normal and really good day, I, falsely, assumed the next day would follow suit. And, it did not.

Not because I am a victim or stuff just doesn’t work out for me. But, because, this is life. One day, we have it all figured out, and then the next day we are smacked over the head with the realization that we do not, in fact, have it all figured out.

I celebrate Taco Tuesday like it’s an actual thing. I try to think of a new taco recipe, every Tuesday. Even, just to keep me grounded. It’s silly, I know. Much like hanging twinkly lights when the outside world tells you, you aren’t just perfect enough.

So, I made the tacos. A quinoa and black bean taco recipe from Cookie and Katie. A recipe, I swear by, since I changed my food thoughts.

Food thoughts. That is it’s own post. Because, food is complicated for me. It heals me, yet it also scared me.

Anyway, I burned the damn quiona. I burned it after I tossed the diced onions and garlic around for a bit, until they were tender. I burned the quinoa because I didn’t trust a gas stove. I learned to cook on a gas stove. And, then, when I moved into space that weren’t exactly to my preference, I learned to cook on an electric stove. And, then, I bought my own house. And, I had a gas line installed and bought the best gas stove I could afford. And, I burned the quiona because I forgot the dance of the gas stove.

I salvaged enough to pretend I put together and celebrated Taco Tuesday and I was all twinkly lights for the evening.

But, the truth is, I burned most of the tacos. A mistake I knew how to handle. But, it happened anyway. And, I was mad. I even went into the bathroom, my wailing wall, and had some words with my tile.

And, I went to bed. Because I had nothing left.

I woke up today, ready to start over. And, it was hard. My sheets and down comforter begged me to stay put, in my bed. Luckily, my dog walker was on her way. And, Belle, is something I never ignore, despite how low I feel.

So, I pulled myself out of my bed of perfectly soft and warm sheets. And, I tried again.

I ate the, salvaged bits of the tacos for lunch and I took a picture for you. So you know what redemption looks like. To be clear, this is redemption, not perfectionism.

I know both.

This is the real me. The girl that burns the dinner and is devastated and cries into the early hours of the morning. But, I get up. I get up, again.

I want to live the hell out of this life. Even if I am a day late or burn my dinner.

I will get up. I will keep trying.

"You're gonna make it after all."

The End.

A Normal Day

“Later on, when they had all said “Good-bye” and “Thank-you” to Christopher Robin, Pooh and Piglet walked home thoughtfully together in the golden evening, and for a long time they were silent. 

“When you wake up in the morning, Pooh,” said Piglet at last, “what's the first thing you say to yourself?”

“What's for breakfast?” said Pooh. “What do you say, Piglet?”

“I say, I wonder what's going to happen exciting to-day?” said Piglet.

Pooh nodded thoughtfully. “It's the same thing,” he said.” 

-A.A. Milne, Winnie-the-Pooh

Everyday I ask for a normal day. A day when my body basically works and I can do normal things like cook and eat. There was a long time when the normal things I love were not possible. I also spent a long time fighting for exciting adventures. And, after I fell really, really ill a few times, I begged for normal days. 

Today was a normal day full of routines and rituals that make me feel normal. Things like, iced coffee and sparkling water, and avocado toast and meditating, and folding laundry. I ran errands, started more laundry, and even had time to purchase a, very fancy and expensive, cup of hot water with a tea bag in it from Starbucks. I came home to a clean house, thanks to Angie, and still had time to start a fire because it is just cold and rainy enough. I popped popcorn, made a cheaper cup of tea, and caught up on reading and writing. 

Today was a very exciting and normal day. 

Only Love is Real

*Yesterday's lights from Instagram and Facebook post. 



Today's twinkly lights. I hit the ground running today...or so to speak. The very last of Christmas is packed away in hefty bins. I thought I gathered all of the decorations and then the timer on the last set of lights turned on, right on time. This made me so happy. And, then, I looked at what these lights illuminated. Only love is real. My very favorite quote from A Course in Miracles. Is this a coincidence? I don't know, especially after yesterday. So much hope for this quote and feeling and truth. I wouldn't be here today if I didn't agree with its sentiment. These twinkly lights just may stay right here, next to the love sign.

A Cup of Tea

Sometimes, twinkly lights show up like a simple cup of tea and sweater leggings and fuzzy slippers and a fire, even though it's too hot. I drink tea because my one of my sisters is an Irish immigrant and my first real sister friend. Clodagh is a force to be reckoned with. She taught me to dance, far too long into the evening. And, then she taught me to eat bolognese sauce to get ready to dance again. Clodagh will laugh with you the most and will cry for you the most. Days after 9-11, we visited ground zero, together. I smelled so much burning and saw pieces of metal and buildings just laying next to us. And, Clodagh, put her arm around me, The American. Every time I screw up and call her sobbing, she says, in her Dublin accent, "Ahhh Sar, you are only human. If people can't love you and forgive you for who you are, well then, that's their issue, not yours,". And, tonight, she imparted her wisdom, once again. "This is my last stop. America is where I raise my children and where I will be buried. I love this country,". Clodagh does not give up on anything. She just keeps going and going and going. She does not give up. Not on anything, her birth country, her country where she raises her children, and her friend, she met years ago. Because I had to pick her up at the airport. She sent me fresh tea bags and a tea cup for Christmas. Because, she knows better than me. That, sometimes, our best moments are a cup of tea before sleep. A ritual before rest. So, we can get up again and dance the day and night away, again. So, we can dance, again.

First day of Project Twinkly Lights and eleven super food salad. It was a good day.

So, the twinkly lights I hung, today, are an easy tale. When I was just a few weeks out...after paralysis. I say this, because the idea I walked one morning and couldn’t, the next, still isn’t lost on me. Say that out loud. I walked one morning and couldn’t, the next morning.  It’s not an easy thing to say or accept. Despite all of my critics. Anyway, I make a point to tell you this story because it has a lesson. And I just love a good lesson.

There was this woman I met because my mom decided to sign me up, against my will, and better seven-year-old judgment, for Irish Dance Lessons. One thing led to the next, as they do, and, along with a friend from school, I ended up practicing at the Pleasant Ridge Community Center as a part of the McGing Irish Dancers. I loved these practises, and these teachers, and this community...center. And, then, one day, this woman walked in, with her three ducklings. And, I knew I loved her.

Her name is, Eileen. And, for whatever reason, whatever gift from fate, she was the very person, who walked into my hospital room, after an accident, at just twenty-one years of life, that took my legs, my life, my entire identity, and somehow she made sense of it in three minutes. This woman, Eileen, whom I met because my mom insisted I take Irish Dancing lessons, said, “Oh thank God. Oh, your face is just fine. Not even a chipped tooth. You are still, Sarah. You will be fine. You will be just fine. You, are still, Sarah. But, honey, that haircut is awful. I need to get someone in this hospital to fix your hair.”.

And, in that very moment, that moment when this woman saw through the breathing tubes and the giant back brace enough to say, “You need a good haircut,”...I thought, okay. Okay. Everything will be okay.

Eileen scheduled that haircut and then she arranged a night out to her home, with her family. She picked me up, in her husband’s car, and it was the easiest transfer, since ‘transfer’ became a part of my vocabulary, that I accomplished. I bought the exact same car her husband owned and I have never looked back.

I arrived at her home, full of butterflies. Would her kids still accept me? Would they be scared of me? Would they know who I was?

Kevin and Ron and Eileen, very carefully, carried me up the single step they have when entering their home. And, after I entered, the three girls ran up to me, one pushing me, one playing with my hair, and one running along, asking a thousand questions. Not questions about my wheelchair, but how I was. Was I happy. Was I okay. And, if I was getting ready for the holidays.

We ate dinner and the rest is history. I have four mentors that are younger than me. Four teachers who taught me to be better and more alive. Four teachers who saw me. Yup, just me. No chair, no issues, just me. Four teachers who taught me to be better because they believed in me.

And, their parents’ did too. But, I know their parents, and they would rather I brag on their kids. Because, these parents, they are the real deal.

Eileen taught me the art of home. She taught me home is a sacred space we must nurture and grow. In so many ways.

I learned to cook because of Eileen and Ina Garten. And, the whole cooking thing, that’s several stories, for several different days.

But, last night, I wrote about inspiration. This moment of spirit. The way it has changed my life. And, today, I lived it, again.

My twinkly lights today, are for washed and prepared vegetables for the twelve-super food Kale salad Laura sent me to approve for ‘healthiness’, this summer, and hand delivered to me for a test run. 

I forgot the blueberries, because no matter how much growth I have, my hair will, always, always be naturally blond.

So, Eleven Super Food Salad is my dinner, tonight. Because, I am, still Sarah. I might forget the blueberries, but I will never forget the people who made me feel like it was okay to forget those blueberries and made me feel like it was easy to love, a person who was super damaged, but was, after all, still Sarah. Even when I thought she didn’t exist.

Thanks for your breath of life, Johnston Family. Each of you has saved me. Each of you has made me healthier. Just like this Kale salad, in your honor.

I do love you. Each of you.

The Beginnings of the 'eleven super food salad.'. If you want the real recipe, google Twelve Super Food Salad. http://www.averiecooks.com/2016/06/twelve-superfoods-salad.html  My tip. Don't for get the blueberries. Laura's tip, double the dressing. I agree with Laura and the blueberries. This salad gets better with time. Just as it should be. 

Project Twinkly Lights

I tried to hit publish on this post about two hundred times. I tried to hit publish late at night, early in the morning, or just a random time in the afternoon. But, I failed. I failed to hit publish.

And, then, one of my very favorite people, sent a text, asking me, did you hit publish?

No. I did not. Yet. I did not hit publish, yet...

I live in this house because the building I love, in the area I love, sold to developers. I moved and bought a house, in a week, because of my parents. My parents, who have a whole history of their own, a whole lifetime before they knew me filled with scars and devastation of their own. Because of my parents, whom I didn’t always understand, but who always, always gave me a roof over my head. Always.

And, then there is Ashlea. When I couldn’t find anywhere to live, I remembered the neighborhood where Kyle and Ashlea purchased their first home. I moved into my home, in that same neighborhood, in a week. Ashlea, was my first friend to visit my new home. Later, she visited with her two kids, then three kids, and then when there were four, we visited, here, alone...for girls’ night. And, Christmas rolls around every year, and Ashlea, from the day I moved in, asks, Sar, can I please just hang a strand of twinkly lights...even if it’s just in your room. She will even stand in my bedroom, like Jeff Lewis, and all designer-ish spread her arms around my windows, and point out just where she will hang them.

And, I say, no, no. I am not doing any decorating until things are just the way I want them. 

And, a few years go by. And, I realize an accessible house is neither easy, nor is it cheap. No matter who is paying, a home that works for me isn’t easy or cheap. As the contractors come through, pointing out just how many times I crash into the small doorways, as evidenced by the black marks, or how they can tell I jump uneven tresholds because of nicks and crash marks, I realize, even in this chair, I do not understand just how much I adapt and accommodate. I live in a world that doesn’t work for me. I get by in a world not made for me. Things, just the way I want them, are a long, long way off.

And, that’s okay. It really, really is. 

Or, so I thought.

And, this this summer happened.

After enough time with Glenda, the Good Witch...aka Ashlea..., in early January of 2016, I decided, to finally hang the twinkly lights in my room, around the windows...in December of 2016. I would prepare the entire year to make things just right for the lights. Right around this same time, I heard an interview with Joanna Gaines. And, she mentioned she worked to make - where ever she lived - a home, doing whatever she could to make it a home. Well, I am very aware of my limitations. Not in a cynical way, just in a practical way. But, I am also very aware of my strengths. I know, even though I live in a fixer upper and would love to tear down the old wall paper myself, it just isn’t going to happen. But, I also know I can move furniture and organize and hire people to change light fixtures and learn how to do things I didn’t know I could do before. And, I can buy appliances that make my life easier. Like, front-loader washers and dryers. Because, after, seventeen years of Mary Lou Retton style laundry, it’s nice not to have to climb and bend and twist to wash my clothes. I knew my limitations and I did what I could do when I could do it. And life started to get a bit easier.

And, then I got all brave. My neighbor is this crazy urban gardener. She grows every vegetable - all on the side of her house. I quizzed her about her method and the work, insisting I just wanted to start with herbs and pretty flowers. She gifted me her nutrient rich and magic soil recipe, and I ran around to stores, purchasing everything on the list. I white washed my Terra-cotta pots. I hired someone to refinish my back deck and build custom cedar planter boxes - all along its railing. Because, damn-it, this was going to be the year I finally decided to hang the twinkly lights.

And, I worked in that little garden. And, out in my front yard. My nearest and dearest all contributed. Every, single one of them. Planting and mixing soil and carrying in plants and approving color schemes and putting up with my ideas. 

And, then, one day in late June, I went in for a routine MRI. I, actually, went in, still wearing my short Hunter boots, all covered in soil, because I was gardening and almost forgot about my MRI. 

I knew my health was declining. I was getting signs. All kinds of signs. I just actually thought...enough. This is not happening again. I am sick of stuff getting in the way of my life. 

Well, that’s not really how things work. Happiness doesn’t really come from the outside or what we want to happen. We get to believe this for a long, long time. We believe it is up to the outside world, our successes, our facebook status, or how we meet the check list of all-the-things-that-are-supposed-to-make-us-happy. 

And, slowly, over time, we learn we are not in charge. We are human and vulnerable and breakable.

I got a really bad phone call when I didn’t want to answer that call. I heard I was sick when I didn’t want to be sick...again. And, I had to go through it all, again. The IVs and the surgeries and the visits to the hospital.

But, I still watered my garden. I still ran to the garden center when the temperature cooled enough to plant the purple kale, just like Joanna Gaines. 

And, this Christmas, I hung the twinkly lights. In my bedroom, in the living room, in the bathroom, and in the kitchen. And, on the real, live Christmas tree my parents carried over and put up for me.

Look. I am the first one to tell you not to give up and the first one to tell you I understand why you want to give up. Right before this whole June thing happened, I received a private message from a friend, asking me how I continue to keep living, even when I don’t want to. I felt like a fraud. Because I couldn’t answer. Because I had no idea how.

And, I still have no idea how. I just do enough to get by.

I feel inspired by those around me and I try to do them justice.

I cook a recipe from a book each day.

I insist on organizing the insides of cabinets and the sweaters in my closet.

I plant a garden because my friend did.

I watch fashion shows on line and read fashion blogs, as if I wear anything but crew-neck sweaters.

I try out every skin treatment on the Today Show and pinterest.

I move furniture around and change hardware on the kitchen cabinets I can reach.

I build real wood fires and, bravely, I might add, clear the cold air with wadded up newspaper I have to light and hope to anything that is listening that it doesn’t fall back on me.

I drink tea, in front of the fire, with the twinkly lights on, and am grateful for the day.

Because that is all any of us has. Today. 

I don’t have a clue how to get through the hard stuff. But, I can tell you how to do enough to get by. I can hang the twinkly lights, even when everything isn’t perfect, and sit and enjoy them by the fire I built.

And, my house still isn’t perfect. For a lot of reasons. But, that doesn’t mean I can’t make it a home and choose to live, even when I am told I am dying. I can plant a garden and I can hang the damn twinkly lights around the windows in my bedroom.

I’ve been doing this all along. This living when I was dying. Just ask the nearest and dearest to me. Not because I want to prove myself to you. But, because I need to prove  I am okay to me.

I have a long life ahead of me. I want to hang those twinkly lights every singe day. Just as I always have. I want to remind me --- I do this. I want to remind me that I am okay. I want to show up for me.

The word inspire comes from spirit. To, breathe-in. So many people have inspired me. So many people have watered parts in me I didn’t know existed. I need to believe in me a little bit everyday. Even if I don't believe I am able to document those few moments - even if they are that cup of tea in front of the fire - that inspire me most, I need to do it for me. Because I am starting to believe my place is to be broken. I am starting to fear living. And, that's not okay.

I, finally, need to write that friend back and respond...I don’t know what I do or how. But, here are all the things I love about life and I do every, single day.

I just hope, like the people who inspire me most, we all continue to inspire each other to keep on living.

There are twinkly lights to hang. Even when it isn’t perfect.

Time to hit publish.