What I Need

Black coffee sits to my left, bitter as the bitterness I feel in this season. My mother, weary, not herself, steadily declines as we watch.

How did this happen? Her days running out. Sands slipping faster through the glass. Dying as we continue to live.

Can I help?

I text this question to my sister-in-law one morning before another wave of family arrives and immediately receive an affirmative response and a list.

I try to learn from this.

What do you need is met with a busy signal in my head. I don’t know what I need.

What do I need?

I need my mom to not have cancer. I need big space that I don’t have. I need time, energy, and loads upon loads of grace.

I need to peel back all the extraneous and dive down to the core and then stay there with no expectations.

I need coffee, black and bitter, the drink I have shared with Mom from the beginning.

I need showers, hot and long. Time to meditate as the water pounds my skin.

I need to show up as I am and be seen and heard and understood.

I need engagement and rest and energy and breaks and a house that stays clean and litter pans that sift.

I need to love and teach my kids and care well for them.

I need to cry, wail, grieve, write, teach, cook, clean, work, rest, laugh, talk, sit, stand.

I need understanding that I’m not really sure what I need.

Winning 2020

We win 2020. It brings a horrific diagnosis, but it does not take Mom from us.

Not wanting to miss a moment with her or my siblings who are all coming in from out of town, I clear my calendar to be an out of town kid with my sisters for the last week of 2020. We stay in our parents home together, gathering gradually until there are four of us.

The week is full of reframing stories, having positive corrective experiences, processing embodied trauma, and decluttering Mom’s things with her.

We joke that she has created a giant Memory game for us to play as we find the bottom of a cute little decorative box with her jewelry and its lid in a dresser drawer in the guest room. We help her sort and put like things together and get rid of what no longer serves.

We do her nails, she passes out jewelry, we wear her clothes, we put on fashion shows. We laugh and cry and stay up late working on puzzles. We sing and do skits and welcome her brother, our Uncle Roy, who comes to visit.

We don’t want to miss a moment. We don’t know how many more we have.

Childhood floods over me like a tidal wave. Long-forgotten feelings surface as the sisters stay up late into the night remembering together. I wake sobbing in the wee hours one morning, and a sister crawls out of her bed and onto my air mattress. She holds and soothes me while decades of tears and pain release from my body.

We gather for family meals at my brother’s house. His wife loves us all well with her hospitality. A friend prepares chicken barbecue and buys chicken salad and croissants for us. We do countless puzzles.

We rearrange furniture and rooms and claim mementoes. Mom sits with each of her children one by one and gives them treasures she has chosen to pass on to them. The grandkids who visit pour over the jewelry tray, choosing something that reminds them of her.

My eyes land on a pair of earrings that immediately brings tears, then sobs, and I add them to my pile to be curious about later.

Days begin with coffee and soft-boiled eggs on toast, which I learn how to prepare in the special waterless cooking pan. They end with gathering around the puzzle table or the keyboard or a bit of both. There is much singing and laughter and copious tears.

And we end 2020 with Mom still here.

The clock strikes midnight on December 31, and I sing the Doxology standing between my mom and uncle. This is a family New Year’s Eve tradition. Mom joins us. Our eyes fill with tears. We hold every moment holy, glad to still be together to sing.

January 1 arrives and no Word of the Year post publishes, though I have a phrase chosen. I plan to write more soon, but for now I am taking time to live in the moment and savor the time and cry over goodbyes with my siblings as we anticipate the hardest goodbye to come.

Happy New Year, Friends!

Christmas Lights

We have exterior illumination adorning our Wolfe Street porch! After almost 29 years of intending and hoping and one years, the time is finally here. It is a reminder that there are still tree of life moments in the midst of looming death.

I love your lights! I can see them from my kitchen window while doing the dishes, and it’s so cozy!

Our little girl loves walking past your house and looking at the Christmas lights.

The comments come from neighbors and bring my heart joy. I laugh that we have a slow turn-around time with our house projects and intentions and tell them that to think of us on the days when discouragement sets in that things will never change. I want them to think of and remembers us in ten years when the days are hard and hope for change feels far-off.

One day the light will come.

This is the year of another phase of extensive electrical work in our big old house. External outlets made the list. Every year during the post-Christmas review we say next year we will hang outdoor lights. Time passes, other things take precedence, and it remains dark.

Steve and Roo hung the Christmas lights.

We hold on to hope in dark places. This year we see and celebrate the playful, colored light in the midst of it.

It is the last day of 2020, and I sit in the early-morning hours in my parents’ living room. Though I am the local daughter, I am here for the week like my sisters from out-of-town.

We spend time doing daily life together, living with both parents like we did so many years ago in so many houses in so many cities in so many states. Our uncle visits bringing with him a rush of childhood memories.

My young self is so close, the one who hung a strand of colored lights around the window in her tiny room on Nicholson Street. She has much to tell me, and her big feelings come in waves, in sobs.

She is comforted by sisters, mother, father, uncle in ways that are new. She sits as part of the pack when she can and wanders off to far-away corners of the house when she can no longer. She laughs and cries and feels all of her feelings and is neither a sick cow nor crazy person.

She is a human .being with permission to feel all of the things and to talk about whatever she wants to talk about and to be quiet when there are no words to say.

I ride with my parents and uncle to the family dinner at my brother’s, the other local sibling. Sitting in the back seat of the Odyssey, I help Mom with her seat belt, and we ride side-by-side like sisters. One sits behind her dad, the other behind her brother.

We ride, admiring the twilight and clouds and full moon. We realize that we almost have made it through 2020 and then sit quietly, enjoying just being together.

On the way home, Dad suggests a drive to look at Christmas lights. Mom loves to look at lights and has been hoping to do so. She wants to see my house at night, but the timing has been off.

Tonight is on. Her brother is in the car with us, and it is fun to show him her town and neighborhood.

Dad knows exactly where he will drive, mostly, and turns left onto Dogwood. Mom and I hold hands in the back seat.

This is where we used to go for walks when I could go for walks.

Dad turns down streets and side streets and crosses over to my side of town so Mom can admire my porch. She loves it and tells me so. We continue the drive around my block and back home, noticing the different types and colors and scenes and winter wonderlands and just enjoying being together. That is the theme of our days and times.

Just being together.

Winning Christmas

We won Christmas.

Waking early to stack presents under the tree, then rush back to bed for a few more minutes of sleep, it is the first year Steve and I are awake before our kids. Mom is still here and celebrating with Dad low-key across town, as we open presents at home. Snow falls. Her final Christmas is white.

I open thoughtful, fun gifts from my kids. We do not eat our traditional Christmas breakfast until after 10:30. I guess that makes it brunch. Everyone is growing up.

The day is relaxing and slow. We give Mom and Dad space together to exchange their gifts and time to visit with other family members. Family begins to gather to spend the week between Christmas and New Years. It is a time that works for us all, and we seize it.

I pretend to be an out of town kid and pack a bag to stay at my parents’ house for the week. I have a grandbaby coming in mid-January and need to quarantine soon in preparation. I savor every moment with mom and family as we embrace the bittersweet, sacred space.

We won Christmastide with mom. The days led to weeks and to over five months and here we are on the fifth day of Christmas. Still together. Still living and laughing and loving until the end.

Watching and Waiting Days

The watching and waiting days of Advent lead to the longest night ~ one where Mom’s sister is here visiting her. I walk across town to visit with them and feel my young heart remember.

These waiting days bring more Thursday mornings with Mom and Dad ~ more working on puzzles and drinking coffee than sharing stories. They bring the gifting of Mom’s teenage charm bracelet to me one week. They bring abundant laughter and copious tears.

I don’t want you to leave.

More moments happen with me, head on Mom’s shoulder, arm linked through hers, hands clasped, fingers entwined, sobbing. All the times my little girl, teenage girl, adult young woman, midlife woman, older woman self wanted, wants, will want her mom come flooding over and out and around us in heaving sobs.

We won Christmas.

Christmas Eve is a Thursday. I sit with my parents at the dining room table. We finish the birthday kitten puzzle, eight kitten faces, eight pairs of kitten eyes popping out of gift boxes with balloons and streamers surrounding them. The missing green piece is found under the table.

We thought it was missing!

We are all getting really good at puzzles.

I plan to leave at 10:00 to shop downtown. Mom and Dad ask to join me, so we make an outing of it. Driving to the Water Street parking deck in the rain, I sit in the back seat of the Odyssey ~ the only child riding behind her parents.

It’s a positive-corrective team-building experience as I carry the umbrella, holding it above all of us to shield from the rain. I joke that I can now check make a Christmas memory with Mom and Dad off of my bucket list.

Agora Market is the perfect choice. There is a coffee shop where Mom and Dad order a latte and chai. A former preschool student recognizes them and says hello. I walk away as they talk, my eyes, the only part of my face showing, filling and spilling over with tears. The 90’s feel like an eyeblink ago.

Mom and I agree that she will select gifts for Dad, and I will take them discreetly to the counter. The cashier stows them to the side until all are gathered. I pay for them at the end.

She sees a black dress hanging. She knows it will be perfect because of the way it falls when she fans out the fabric of the skirt. I think of Jerry Seinfeld’s sketch on the difference between men and women when trying on clothes.

She also grabs a cozy sweater and chunky earrings. All are so beautiful and so her.

We return home, and I help Mom wrap gifts. She tries on her new outfit, and I leave to run some errands alone.

The smell of bacon fills the house when I return. Mom and Dad putter side by side fixing BLT’s for lunch. Mom wears a vintage apron sewn by her mother, my grandmother, years ago. My grandmother still lives with her husband in Michigan.

I won’t know what it is like to lose my mom.

My mom says this to me during a conversation. She won’t know loss. Not like this.

I can’t think too hard on that now. The pain runs deep. She and her mother are all I know of a mother ~ daughter relationship in the future. We were working hard on ours.

I thought I had at least 20 more years with her.

I hope I get 20 more days.

Mom peels and cuts a large naval orange into chunks, filling a bowl with them. She opens and pours out a small bag of Rt. 11 chips into another ~ not the Yukon Gold ones of early to mid fall ~ but regular.

I pour glasses of milk and Dad pours a Yuengling, and we all sit down. Just three of us. A Christmas record plays on a new record player that stands on the vintage record cabinet that Deanna and I helped Dad find the Saturday before.

Mom’s Christmas gift.

December was a month of gifts for Mom. We started Hallmark movies in October. That’s when the red Hallmark Christmas Movie watching blanket and the Merry pillow arrived.

It’s a delicious lunch followed by a rest for Mom and shopping trip to the co-op for Dad and me. We buy groceries and a few stocking stuffers.

Returning home, Dad disappears to his third-floor hideaway. Mom and I hunker to rest and watch a movie. This slow day ends with Steve picking me up for re-entry into my local life. I walk downstairs from the third floor with Dad to find Steve sipping coffee on the couch across from Mom ~ coffee she helped make for him.

We say our goodbyes and exit the front door. Stepping onto the porch, surrounded by the brightness of the colored LED lights and the darkness of a December evening, my heart relaxes and releases all it has held and pondered this day, and the tears begin to fall.

A Sister-in-Law’s Goodbye

My sister-in-law died in Wisconsin last Saturday. Today we buried her in the cemetery within walking distance of my home in Virginia.

Husband returns to the family from quarantine tomorrow. He drove to an assisted living home in Wisconsin the day before Thanksgiving to be with his sister for ten minutes to say goodbye, fully protected in PPE. We knew this would mean no Thanksgiving together and days of self-quarantined separation following.

She died of Covid-19.

Steve held her hand and stroked her forehead. He spoke words that only a protective brother has for a beloved sister at the end of life.

Stories are complex, and theirs is not mine to tell. But I can tell mine.

I met Kris in June, 1987. I was barely sixteen and had my first real boyfriend. He was cute and funny and had the best eyes and smile. He was also shy and blushed easily. I knew he liked me for who I was, and that was important. I was a treasure, not a conquest, and I felt that from him.

Newly allowed to date boys, this was the boy I chose. We dated on Wednesdays and then once on the weekend. This was our weekend time together.

He picked me up in his blue Chevette for a drive around Northern Virginia to whatever adventure we had planned. Maybe the mall, a park, or a subway ride down to Washington, DC. Anything was an adventure as long as we were together with music playing and the windows rolled down.

This was the fun, new, getting to know you more stage of our relationship, and I loved it.

I knew he had two older brothers, but on this particular day he shared about his sister.

I have an older sister, too. She is six years older than me.

Cool!

She has Down Syndrome.

Oh.

In this 1987, pre-internet, pre-inclusiveness, pre-awareness of anything different from normal, I had no frame of reference for this disclosure of his, only that my response felt important. I played it cool and listened further.

She lives in a group home in Wisconsin with other kids like her.

Big exhale. Ok. Now I had space to process this foreign, important data. My new, hope to be long-term, boyfriend had thrown me a curveball, but there was time for me to maneuver and get into place to catch it. His sister was far away, hundreds of miles away, and I did not have to engage with her right now.

Wow. That’s awesome.

Would you want to meet her sometime?

This question felt big. Heavy. Loaded. Important. Inside the thought terrified me. But there was time. She was far away in Wisconsin, and I would cross that bridge when it came. I was speeding toward the bridge and had no idea.

Sure! That would be great!

I smiled confidently, eager to see what fun thing we were about to do.

She’s home for summer break now. Do you want to drive over to my house and meet her?

Right now?

Panic inside. Wait, what? Now? My confidence melted, enthusiasm waned. I knew this was an important moment. I really liked this boy, and he wanted me to meet someone special to him. I had just masked my fear with over-enthusiasm, and to back out would be disingenuous. A quick check of the internal scales brought my continued enthusiastic response.

Sure!

I hoped the insecurity I felt inside wasn’t registering on my face. I literally had no idea of what to expect. What was a person with Down Syndrome like? How do I act and respond to her?

We entered his suburban, split level house, and I saw his sister, Kris. Jet black hair, bracelets on her wrists, and a grin from ear to ear as Steve introduced me.

Kris, this is Julie.

Hi, Julie! What’s the time?

It’s 11:00.

Two weeks?

Steve informed me that this is what she said about going back to school, since her break was two weeks long. It meant she was going back to school in two weeks.

Yes, two weeks. You get to go back to school in two weeks.

I like you, Julie. You’re cute.

You’re cute, too, Kris. I like you.

What’s the time?

It’s 11:05.

I soon learned that What’s the time? was one of her standard questions, though she didn’t have an orientation to time and just lived in the present moment. Any fears I had quickly dispelled as I engaged with this delightful young adult woman who eventually became my sister-in-law.

Tears fill my eyes as I write this. Unexpectedly I am caught off guard by a wave of emotion as I remember younger Julie and younger Kris meeting each other for the first time, not knowing what was ahead for them. I feel their innocence and hope.

My heart aches for all three of the young people in that room.

That’s my brother! You’re cute, Steve. I like you, Julie.

The look on Steve’s face spoke it all. Kris liked me, I liked her, and whatever came next, we had this moment.

Goodbye, Dear Kris. Thank you for introducing me to the beauty of the different in such a gentle, playful way, and for loving your brother so well so that he could love me and our family better. You are so very missed.

Meet Kris here and be sure to read through the memories and comments for the most complete picture of the delight that was Kristin Lynne McClay.

A Granddaughter’s Goodbye

Outside is gray and wind blows more of the crunchy, faded leaves from the tree of friendship. It has grown from sapling and is now tall enough to be seen outside of my second-story office window. I watch the remaining leaves cling fiercely, not ready to end their season of holding space this fall. I want them to remain there as long as possible. I do not want any more time to pass.

I remember the beginning of this week. I don’t want to forget.

Monday I went to bed with plans to visit Grammy at 10:00 Tuesday morning. The last time Steve and I saw her, she was in bed. There was life in her eyes and a smile on her lips. She recognized us, commented on Steve’s long hair (Ok, put your hat back on!), and beamed over the news of my firstborn’s pregnancy. (Another baby!)

Large tears fell from my eyes and onto her covers as I remembered our pre-Covid days at Brookdale ~ when we could walk to breakfast or lunch together using her walker, when I would push her in her wheelchair, when we could no longer visit until it was the end. We are here. It’s close to the end.

Steve opens the blinds so we can look out the window at fall colors. Birds fly to the feeder. The sky is late October gray, as the sun begins its early descent. Grief catches me off guard. I hold it in.

Ok, you can go now.

It’s a familiar goodbye, and one I am not sure is for her or for us. Which of us needs permission? I hang on a little longer, unsure if this is the last time we will be together in person. (it is) I don’t want to overstay, so I lean over the bed, hug her close, whisper goodbyes and I love yous, and exit the room with tears rolling down my face.

So now it’s bedtime Monday evening, November 9, 2020, and I wonder if Grammy will be there in the morning. Should I have gone over and stayed? Each night I wonder if it will be the one. The wait is truly the hardest part. I pray rest for her. I will go over tomorrow and stay.

I startle awake in the early morning hours, Grammy on my mind. This feeling is different than my usual insomnia. I feel a strange calm unlike any other night-time wake in this season and wonder Is this it? Is Grammy passing?

There is no urgency to get out of bed ~ only to bear witness to the moment in my spirit. O Sacred Head Now Wounded plays in my mind, every verse I have ever heard, including Be near me, Lord, when dying. . . especially that one. I hear the tune, the singers, the words. I pray it for her. If it is her time. Be near.

It is followed by Sandra McCracken’s Love Will Bring You Home. I pray again that if it is time, the passage is smooth and kind. I pray she is brought home by love.

I am so present, which is unusual for middle-of-the-night stirrings. I fall back into a restful sleep without any of the usual back-to-sleep aids like reading, journaling, or hot tea. I wake Tuesday morning to a text from Dad.

Grammy died last night. The hospice nurse pronounced her passing at 2:30am . . . Please let your siblings know.

The end of her story at age 97. A long life well-lived. Over. It is Tuesday, November 10, 2020.

I scroll in my phone to find our last picture together, taken in February before Covid shut everything down.

I feel sad and glad and weary and begin making phone calls to my people.

Being the Daughter

I know that my mom is the center of her own story. The star of her own show. Dying of pancreatic cancer is traumatic. Bearing the pain, the news, the treatments. I cannot imagine the grief and loss that comes with facing the end in that way. Her story is not mine to tell.

And yet . . .

Being the daughter is difficult, too. There is a strange supporting role that overlaps. I have my own story of grief and loss in the midst of watching my mom live out her days. I am losing my mom, my hopes and dreams with her, my emergency contact person for my kids in school.

In early July when I filled out school registration forms for my three high school kids, it was so easy, because everything was the same. In August when I registered the fourth in a new space and automatically began typing my mom’s information in as an emergency contact person, I froze with the reality of the news we had been given and broke into gut-wrenching sobs before texting my sister-in-law to ask if I could use her instead. I did not even want to consider what the end of the school year might look like or where we would be.

I sit awake in the middle of the night, the time when grief barrels down like a freight train, because that is when the house is still and quiet and no one needs me. I carry my quilt and hot tea to the tiny office upstairs and sit.

One day I will have home office space big enough to hold a couch or recliner or something more comfortable than a chair and makeshift tiny ottoman. I am thankful for what I have now, space just for me and Pierre the bird, whose cage I have resumed covering again so my middle-of-night visits don’t disrupt him..

On a good night I meditate or journal or read to quiet my mind before returning to bed. Then there are the nights I spend searching my phone, scrolling for stories, for connection, for others who may be feeling similar grief. Those nights I know I should just put down the phone. It’s not good for my sleep cycle to be staring at the light.

It’s also not good for my sleep cycle to have a mom that is dying.

We won another month.

Hello, November! You bring us a new start.

I deeply hoped we would, even though the beginning of October felt tenuous enough for me to cancel a trip, even as mom planned one of her own. She travelled, saw her people. I stayed home, sat in hard places, and fed her cats. I started a new client and engaged my own grief.

l listened as my body bore witness to my story, kept showing up for my coaching group, checked on Mom when she returned, gave big space when I couldn’t.

I want to know how this ends, but I don’t want it to end. I want a place to fall, land, be held without feeling both complicit and responsible. I want absolution. Kindness. Care. I want to watch all of the amazing things everyone else is doing with their lives and families while believing that my grieving is enough for right now.

I am both a daughter losing her mother and a mother of many who need to be actively mothered. This is not easy. There is a little girl inside who just wants to be able to cry, release, speak the truth of where I am without being blamed or fixed. We all need so much of each other. We are all so alone.

Being the daughter means having young places inside stirred by this reality, places that desire deep freedom to be who I am and generous love and acceptance. Big kindness. I want to be seen, known, loved, understood, tended. Being the daughter means sitting in the shadows watching the stars of this show play out their scenes together.

The shadows feel familiar.

I am so grateful for each of you who has seen me and reached out in the ways you felt led. From cards in the mail to bread and butter left in brown paper packages on the porch to invitations for walks to understanding that my absence or silence is not personal, it all matters.

Even unspoken thoughts matter when you are the daughter losing her words in the midst of this nightmarish loss.

Hindsight 2020

Unicorn bath bomb swirls colors into steaming water. I watch, mesmerized, massaging coconut oil into my hair, a makeshift mask. I bless each dark strand that comes out in my hands. Its replacement will most likely be the color of wisdom.

Hindsight 2020 playlist fills the room with music. All the songs I didn’t know I needed this year, compiled into one list, inspired by Bethany Cabell’s annual Thanksgiving Playlist on Red Tent Living. I always choose random, not chronological, order when I listen.

Chili simmers in a crock pot on the kitchen counter. Just thinking of it’s recipe source, crock pot owner, and preparer brings tears. Such kindness surrounds me. Deep care.

I climb into hot, scented, sparkly unicorn water, letting tears fall. When a heart breaks brings sobs from a heart that has been broken for longer than I care to admit.

I have never been alone in this. Never not loved. Each song reminds me. Each link-sender seeing me in a vulnerable posture of heartache.

And yet an small place inside, a small person, just wants to be held. To not hold everything. To not be responsible for all of the intensity and pain in everyone else.

I see her. Feel her. Invite her to rest in the embrace of water and sparkles and love. I breathe in sweetness and spices and exhale grief. I hold her and let her be held.

Creamy Baked Salmon (a Diane in Denmark recipe)

I’m blogging after a successful Saturday night dinner to remind myself of this evening’s menu and to help me remember and reference this recipe easily. This feels like a bit of kind self-care in the midst of all that is happening. Here’s why. . .

Many recipes I keep in my head, which is helpful until someone asks for the recipe or wants to help me in the kitchen. My teenager often offers to cook and simply needs the recipe, so tonight I am making time to record this one just the way I made it.

It is from Diane in Denmark, one of my favorite online influencers. You can watch her prepare it on her YouTube channel below. In fact, I watched her as I prepared supper tonight. She is delightful company.

I put a spaghetti squash in the oven, halved, seeds scooped out, face down in a 9×13 glass baking dish with a little water at the bottom, covered with foil 10 minutes before putting the salmon in, and it was perfect timing, taking them out together.

Here is the recipe written down. It is fabulous when the salmon is paired with the sauce served over spaghetti squash and a sliced baguette on the side.

Enjoy!