Karen Draper's Blog

Last month Sam and I celebrated forty years of marriage. Forty seems more tender that thirty-nine somehow. Forty complete stories lived together that took root from our seemingly benign beginnings. Our first date. The gentle first kiss as snow fell around us. The way he looked at me as I walked down the aisle. A promotion that took us out of state. Champagne. An unexpected first pregnancy. And the first crisis. This was our beginning chapter.

All forty of our chapters are here for our keeping, preservation and honor. All the mere words that have defined our life – love, disability, illness, advocacy, joy, laughter, humor, understanding, death and grief…ultimately define our love.

Disability and illness led us to a greater understanding of each other and the world at large. Of how unimportant it was if the lawn got mowed or not. Gratitude took the form of things that could be touched and felt. Like a healthy baby girl and a seizure free day. Then the loss of a child, (our son) the ultimate test, if there is such a thing, as we fell together and separately. All while holding tight to our daughter.

Yesterday afternoon we watched The Blindside. I’d forgotten how good it was. Though it’s a football themed movie, it’s really about unconditional love, trust, family, faith and advocacy for who and what you believe in.

I think the biggest lesson Sam and I have learned from forty years of marriage is that no matter how happy, sad or questionable the day – every moment is an opportunity for growing love and having each other’s blindside.

And maybe it’s as simple as sprinkling the number 40 with cinnamon on your wife’s cappuccino, just because.

Every moment is an opportunity for growing love and having each other’s blindside.

Karen Draper

Have you ever shrunk yourself to almost invisible? Imagine being disabled, or gay, or black, or brown, or any other unseen group along with all the other life things.

Today is the last day of Gay Pride Month. So much of what I’ve learned in life is linked to disability and gay rights. They were melded together in the form of our son, Preston and his teacher Miss Steph. Both broken and whole – lamp lights unto the other, they saw the truth in each other’s hearts the first day they met. It makes perfect sense, sharing our vulnerability is literally sharing our truth. They trusted each other to hold their truth the same way you hold a precious newborn baby. They swathed each other in truth telling. A human form of love. One did so purposefully, the other unknowingly by being his unapologetic self.

I don’t believe in coincidence. I do however believe that the universe conspires to put us where we need to be. For me that meant ADVOCACY of all kinds, including self advocacy because of what I’ve seen and heard. I’ve watched other people’s beliefs put on me or Preston, or someone of color, or a person who is gay. And it’s ugly to witness. I keep trying to listen to that stillness inside me. My guide. It knows what I don’t know. A gift given to me long ago. How I’ve needed it the last few months. I wasn’t put here to ensure anyone else’s self esteem. I was put here to be an advocate. And whether through my words or actions, or both. I will continue to do so.

I often ask myself, What is your intention? And usually it steers me in the right direction – either away from or toward an action. When I began writing the book I sat down and interviewed myself. Yep. I was my first interview. What’s your intention? I asked again. My answer was – I want to tell a multi-faceted story. I want each story to serve a greater purpose, to begin a broader conversation about diversity, acceptance, love, loss and courage. In order to accomplish this I would have to unfold a lot of wrinkles. Overtime, wrinkles can wear on your skin and your soul, causing great discomfort. Have you ever tried ironing a stubborn wrinkle? You have to press hard, use a lot of steam and water. You have to be patient as it doesn’t always come out right away.

And now that all of the writing for this book is done, I have returned to myself. My new self is different. I like her as much as I love her. She has learned about wrinkles more than she wanted, but she’s also learned what’s important and what’s not in the midst of all the pressing, and steam and water.

I’ll remember each tear that fell upon my words, but more than anything else I’ll remember the joy that ultimately found each and every word. And the dancing at the end of a writing day when I turned on Adele, Aretha, Sam Smith or Motown and the music became a joyful recognition of a word or sentence or chapter, or of myself.

THE PLACE OF US is about beginning again and again, and how that looks when applied to the realities of a life. I have fully owned the texture of my story. We are one in the same. And I am ready to begin again.

Pre-order of my memoir is available through widopublishing.com

I’m so happy to finally announce that my memoir, The Place of Us, will be available for pre-order very soon!

Writing this book has been such a wonderful, meaningful, and enlightening journey for me as a mom, woman, writer, and all around student of life. Having a child with disabilities changed us, and then losing that child changed us again. This book is a testament to the power of beginning again and again.

It took some bending and stretching of my soul to arrive at this juncture. A rebirth, if you will. A consciousness of who and how I was, an awareness of the layers that helped me arrive at the place of me. Which eventually helped me to live in the place of us more fully and vividly than I ever had before.

I slowly learned that if I didn’t bend and stretch my physical body as well as my inward being that life would not only bend but break me. I gave importance to unimportant things until I realized how irrelevant they were to my personal life map.

After the loss of our son my happy became a different happy that I worked fiercely to acquire and understand. I felt like a gardener trying to dig in hard, unworkable soil. With rocks at every turn. Ones that fought me back and hurt in my bones when I pounded into them. Ones that were stubborn to excavate. And somedays left me feeling so bruised and exhausted, I questioned whether my hard work was getting me anywhere. That’s when you know you’re doing the real work, when you look inward and ask the difficult questions. Excavation usually requires a crew, and I’m grateful to have had one in my husband, daughter, and dear friends and family members.

Life has surprised me many times over. In a nutshell, that’s the premise of my upcoming book. What do you do when life surprises you? My book isn’t an answer to this question. It’s more of a declaration of survival in the form of love, courage and ultimately, joy. And perhaps therein lies the answer.

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I’ve been receiving a lot of questions lately, asking when my book will be published. And so I’m going to try my best to answer you.

In December I received an offer for a book deal from a publishing house. Yes! A book deal!!! So why haven’t I announced it? After several months of due diligence and soul searching I decided to pass. My intuition told me from the start it wasn’t the one.

Since then I’ve completed another full read editing round and a word count reduction round. I’ve tested my memoir with several beta readers and next week I’ll deliver the manuscript to one more reader.

After dropping the publishing house, writing a 29 page book proposal in January, having bronchitis most of February; I began querying again in March. So far I’ve received the following: 1 referral from a literary agent to a publishing house, 1 review before an editorial board, 1 literary agent request for a book proposal, 1 literary agent request for a full manuscript, and 1 request for a book proposal from another publishing house. Oh, and rejections letters – those bad boys get put in the corner of my office.

The querying process has been uniquely enlightening. After writing my mandatory one page query. A description of the book, its hook and my bio – three paragraphs contained on one little page, I thought I was done. Nope. I discovered that, for memoir, I had to write a book proposal (think thesis for a book) which includes an overview, author info, marketing plan, mission statement, special features, reader benefit and chapter outline. I’ve learned so much and am most grateful for the entire process of stepping in and out of my comfort zone to have my work judged and critiqued. But this has been a complete turn about for me. And at times I’ve laughed to myself, remembering how I had to learn patience with Preston, and now again with his life story. When I was writing my book I never waited much at all. It was more of a meditative experience where I found myself returning to a past world. Then channeling it onto paper. The words always seemed to be waiting for me each morning as I walked into my office with a cup of tea in hand. So much so that some days the words were so anxious they found me before I even got out of bed.

And now here I am. In this world of pushing back restlessness, of being rejected and requested all in one day, and practicing diligence in sending out query letters, proposals and manuscripts. And waiting….

Tomorrow I’ll begin my second round of querying agents and publishers. Most publishing houses take up to three months to review a proposal, then can take another three months to read the full manuscript. And soon I hope to hear from the requests in the first round.

That’s my answer folks! It’s really not an answer but more of a proclamation of patience and perseverance. Thanks for being patient with me. Believe me when I say I’m as anxious as you are for the book to meet the world.

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I hope everyone had a happy Easter. This year was different for my husband and I. Sunday morning we slept in later than usual and still woke up tired. Our daughter wasn’t able to make it home. I couldn’t be with my 90 year old mother. And my brother in law, Gale’s mother had just passed away, so on Saturday we went to her funeral. Funerals are of course hard on everyone. They bring to life all the people we’ve lost. And in bringing that remembrance to life it brings with it the love we have for them, which brings to life a tear. And for a bit life feels unkindly rearranged.

Arriving at the church, my husband’s oldest sister got emotional upon seeing her brother. Watching the moment between them made their love palpable and brought to life another tear.

Sitting in the church pew reading the program, we realized that we would be singing, His Eye Is On The Sparrow. This is the exact moment when I began to hold back a mountain. And in that moment it felt big and impossible. Gale has bravely and beautifully sang this hymn at every funeral we’ve attended. In particular, our son’s funeral. And now we were going to sing it with him. I started pinching my nose with my fingernail to hold back the dam. (Try it. It’s a real thing.)

Gale’s eulogy was poignant and funny, punctuated with moments of great laughter. Every time we laughed I felt like we would actually make it through the funeral without falling apart. Our laughter helped to lighten the dark parts.

Then with the point of his finger my husband revealed where she was being laid to rest. This is when the mountain grew immensely in proportion. It was the cemetery where our son is buried. My nose was probably red from being pinched by now. As we drove through the cemetery my memory place sped me back to years ago, then I heard Sam say, “Well, it looks like Gale’s mom is buried close to Preston.” I began exhaling and fanning my face. I couldn’t speak, not even to him. Just breathe and think of Sue and Gale, I told myself.

It’s strange how the entirety of 11 1/2 years ago felt like yesterday, like a storm that already caused irreparable damage came back for round two.

Don’t judge me for what I’m about to say. I need to say it. It’s my truth. I’ve never visited my son’s grave. Not because I’m afraid, but because I’ve never felt the need. For me – he’s not there. He’s sprinkled throughout the universe in the form of coincidence, laughter and song. He’s in my dreams, my actions and forever stitched into my heart’s hem.

Getting out of the car, I started to walk up the hill. One foot then another. That’s how it’s done, I’ve heard. My breath was heavy, my heart hurt taking in the enormity of this unexpected moment. I’m a planner and not only did I not plan this, I didn’t foresee it at all. And now a distant past was trying hard to become now. I saw the tent at the top of the hill. Focus Karen focus. Don’t look to your left too much. I stared straight ahead as family and friends began to gather around the tent. Sam came to stand to my right. His big arms held me without drawing attention. He knew exactly what I needed.

Just then my sweet niece, Anna, appeared to my left. She kissed me quick on my cheek, wrapped her arm in mine and said, I love you – smiling just enough. She too knew exactly what I needed.

After the ceremony Sam went to visit our son and my father who are buried in the same row. I chatted with Anna and her kids. We talked about flowers, hair. We laughed some more. I felt lighter. I couldn’t even look in the direction of where Sam was. That would have taken my heart there. It would have rearranged it too much for this day. Sue went to check on Sam and visit for awhile. Seeing them walk back together brought a smile to my face.

We knew we would be attending a funeral on Saturday. We knew our presence and love was necessary to support Sue and Gale. We didn’t know our day would be rearranged. I didn’t know I would ever be back at this place that holds such uncertainty and unspeakable pain.

Sitting on the sofa after a lazy Sunday breakfast, I looked at the fireplace mantel and knew I needed to replace the worn out daffodils. I was disappointed that they didn’t last as long as I thought they would. I laughed to myself at the irony. So I rearranged the mantel with fresh, bright forsythia branches. As I placed each new branch into a vase I could feel the lightness covering the dark parts once again. Life begs of us to constantly rearrange. Often, unexpectedly. Through the years I’ve learned that it’s not the rearranging that hurts the most, not forever, it’s the resistance to rearranging that hurts. It turns us into brittle, unapproachable beings. Rearranging is healing and wise if we allow ourselves to be patient, observant students. It makes us new again. Used, but new.

In looking back at the weekend – the hurtful, unrecoverable pain was kept at bay. A life well lived was celebrated. And love gave everyone the strength to conquer that damn mountain.

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The art of storytelling is as simple and complicated as it is to care for another human being. Or ourselves. Stories grow and evolve just like us. While part of the story remains static, change is happening all around. Like life, it’s a great balancing act. But no matter the plot, or person, all the parts, if used wisely and with great thought… make a whole.

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Grief is the love that waters the flowers of our soul. Sometimes they curl up in the darkness to rest. Sometimes they bloom.   karen draper

Last year when we marked our ten year milestone, I said I wouldn’t write any more memorial posts about Preston. When I think back to that statement I realize how silly it was to foretell what I didn’t know. I am still, and always will be, learning. Sitting at my desk as I write this post, I have NO idea what I’ll do next year. I won’t know until I get there, and when I do, I’ll do whatever feels right for me.

Every year on our son’s heavenly birthday, I look at the first two photographs to remind myself that anything is possible. They don’t match the bottom two – they’re not supposed to. How we begin doesn’t determine a life. And whenever we want. We can begin again. And so it goes…

What I really want to do though is talk about grief – a subject that is rarely discussed. As if talking about it prohibits the continuum of life. Or. Gives a misguided perception that if you do, you must still be stuck in it. Whether you’re grieving the loss of a child, spouse, parent, friend, or even a relationship; I hope I can offer a perspective that helps you in the healing process.

Grief doesn’t ask permission. Not ever. Though it does teach us the enormity of love. And the capacity within our muscles and bones to expand into another place. Grief is amazing in its ability to heal and hold love.

Now, almost eleven years after Preston’s death, Sam and I live with grief as a silent partner. He doesn’t visit often, but when he does he’s an all consuming, sometimes, rude house guest. He arrives unexpectedly. He’s messy, opening doors that were closed and leaving windows ajar to let in what may. And when he leaves we clean up after the mess, and begin again.

Living with grief as a silent partner doesn’t mean we’re not joyful. Most mornings we awake happy and well fed by life. It also doesn’t mean that we don’t think of our son everyday at some point, or at many points. Often people have said, “Sorry I didn’t mean to bring him up and make you sad.” Please know that we can’t be made sad by the mention of our son’s name. However, it does mean that when we smile a memory up, we stop and pause at the sheer beauty of it. And for the most part we’re happier than I ever imagined we would be.

Of course there are the days when his presence is felt here on earth as though he never left. When we feel him so tightly around us, our hearts can’t help but be squeezed by our rib cage due to its enormity. That particular pain is the one felt way down deep in the marrow of our bones. Giving us pause at how the pain is so close to what we once felt; realizing yet again that we will always be in recovery. (More on recovery in the book).

Over the past eleven years, we’ve learned that recovery is most forgiving, allowing an abundant space for growth. Reflection. And for love. Each successive year we grow a little more, reflect a little more. And for sure, we love a little more.

So, today, go love someone a little more than you did yesterday. And please, GO HAVE A FROSTY FOR A SPECIAL REDHEADED ANGEL!!!

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Raising my voice on behalf of our disabled son came naturally – I was his mother. His dad and I saw his disability rights as basic human rights. So we spoke his name along with our names on behalf of him. For me, writing was as natural as breathing, but learning to speak my name (on paper) in an even louder voice felt bigger than it deserved. For this introvert, initially, sharing it took a lot of effort. In reality I was being an extrovert on paper. And then one day, one miraculous moment in time, I looked up from the page I had just written and the audience behind me had disappeared. Just like that I’d discovered another layer of my worth.

Slowly and suddenly my memoir began taking shape. It formed itself from raw, real emotions. Recalling twenty-three years of our son’s life stirred up the dust in my memory place. Thoughts on love and joy, courage and compassion, death and grief, celebrating diversity, and how to live a life after the loss of a child began forming themselves from a fully fed well deep in my soul. And the more I wrote, the more it replenished itself.

Eventually, in the most thorough and freeing manner, I came to realize what it means to truly know your worth – that’s it’s not a one time fix. That it’s not a fix at all! And that it shouldn’t end when you’re 40, 50, or even 60 and beyond! Wink. Knowing your worth takes a lot of practice in our ever evolving cycle of life.

Knowing your worth is worth the work!

In preparation for sending out an indecent amount of queries/submissions next week, I spent this week re-reading my memoir and I feel even more excited and hopeful than the last time I read it.

Knowing your worth is defined in tentative beginnings and spoken even louder as you finish each one. And anyone who tries to diminish either of your efforts is simply not worth it.

Never stop beginning.

Never stop finishing.

Never stop raising your voice.

Never stop speaking your name.

Never stop knowing your worth.

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Poems have been a part of my life ever since I can remember. Growing up, my father wrote poems for my mother on special occasions that usually involved poetic clues to what or where her present was. My oldest sister, six years my senior, used to read poetry to me. So much so that when I saw her coming toward me with a certain book in hand; knowing she was going to read The Raven to me for the thousandth time…I ran!

I’ve always loved playing with words, though. My father taught us that words were precise beings. But we learned early on that words needed to be followed by like actions if they were to mean anything at all.

I guess you could say this poem has been a long time friend. One who pushed me to know myself. It came to me fast, like it had been frantically looking for me in a crowd. It was the one hiding in me since childhood that said, Ahh, THERE you are! I would have never found you had you not turned around! And it’s the first one I officially shared outside of my guarded heart. Written in 2001 for, my son, Preston’s eighteenth birthday, before I knew how to fully receive a poem. Before I knew how a word or thought could take me, and sweep me away to another dimension inside myself. It’s not complicated or intricate, but true in its simplicity. It taught me to fully pay attention to the intent and purpose behind the words. Words like diversity, inclusion, unconditional love, celebrate, real and the ability in disABILITY. And even though he was complicated and intricate, it tells of how I saw him as perfect in his outwardly imperfect body. That, coupled with realizing other people saw him the same way was the greatest love lesson I will ever know. This little poem taught me to care greatly how my words affected others, but it also taught me not to care too much so it wouldn’t affect my writing. Writing can’t be photoshopped or it’s not writing.

It was the tiniest of stepping stones so I wouldn’t notice the step. One that led me to my truest self so I could write my memoir.

Just like a best friend it nudged me over the fence to go explore the field beyond when no one was looking. Together we whispered and laughed at what we heard. Our eyes grew big with exclamation at what they beheld. And when I smelled and tasted the words, each tiny tastebud was forever altered.

All because I offered myself to a poem. And it accepted.

The words took me where I didn’t know how to go. Writing made the muddy waters of love, disabilities, loss and grief clearer for me.

The blank page became a repository for my life’s experiences. Ultimately, I learned that words can’t stay lost if they come from soul work. For me, soul work has been an examination of how and why I felt something – its origination and culmination. Like a living autopsy of my senses, feelings and thought process. And ultimately, my healing and growth.

I’ve known for a long time there’s a reason for all of this. Preston was born the complex way he was so I could discover that, I too, was born this certain and imperfect way. So I could catch his challenges; hold them, soothe them, nurture them. Then release them into the universe so I was ready to hold nothing but his strengths. So all the people in his life could find him and discover the reason they were born this certain and imperfect way. Perhaps every single person who saw Preston, then, through the looking, saw a deeper more vulnerable part of themselves in him. And in the looking formed a connectiveness with him. So they, too, could see the mirror of his soul reflected in their eyes.

What I’ve learned through my life experiences, beyond question or reason, is that – if our ears are tuned in, if our hearts are open; we hear the whispers meant for us. Our truth. And if we’re lucky enough we then interpret them into our own DNA. We evolve. And are forever changed.

In writing it’s important to know how to find and express the right words. In life it’s equally important to know how to find and express the right feelings. And when the feelings meet the words waiting there on paper – something truly indescribable happens. For reasons beyond my control or explanation, I was able to see it all clearly through the mirror of his soul.

I can’t wait for my book to be in your hands. My prayer is that it never leaves you, that, hopefully one or two sentences curl up next to you and carve a niche in your heart or mind because words are really, little human beings on paper. If you get it right. So I hope that as you  interact with all the beings on the pages, you’re left thinking, crying, laughing or reflecting on what it felt like to be in someone else’s life for the hours you sat reading my book.

In my memoir, I write about beginning again and again. And what that means when applied to our concept of reality. This is my reality. My heart – one of them (You’ll soon understand).

This is my beginning. 

BOOK NOTES: I have some exciting meetings coming up. I don’t know what will come from them, but I’m hopeful. I know it seems like forever since I finished the book. I remind myself daily to be patient, and that the process of selling a book is hard work that can take a long time. So, please, hang in there with me. As a BIG tease I’ll give you some clues……