It was four months ago today that my mom passed away.
It was an excruciating journey.
One you wouldn’t wish on anyone. Sometimes I can’t believe this is our story.
I am still numb.
I started counseling in the final year of her life, to process the grief and put a system in place to deal with the inevitable loss. I went to restorative yoga and took classes on breathing.
I gathered the tools to put in my toolbox. I suspect at some point the emotion will flow.
There were many good times. Up until the last month, there was always laughter. (Mostly from making fun of my Dad.) My mom had a wicked sense of humor passed on to both me and my son, and we used that tool effectively to lighten the darkness.
Speaking my mom’s language was a high priority. Managing anxiety. Building endurance. Seeking beauty.
“My mom has a poet’s heart,” I would tell every new caregiver who came to the house. “That must be honored.”
I found out after she had died that she had her own column in the college newspaper. I was not surprised she did, just surprised we didn’t know.
I am also not surprised that her words could have been written today–the timeless creature that she was.
I BEGGED her to write her memoirs and will never not be sorry that she never did.
HOW did MY MOM end her life unable to communicate?
I am grateful my faith is deep and I long ago learned to be okay in HIM, facing that which I cannot understand.
“I trust you to tell me,” my mom would say, “when it is over.”
I smile. Nod. Unflinchingly honest, I knew I would honor that request when denial and resources were both exhausted.
“I am so, so sorry, Mom,” I ache as we are talking about Hospice, “but I am out of ideas.”
Hospice was another road in the journey with unknown twists and turns, and none of us knew the distance from that beginning to the ultimate end. All we can ever do is our best, and we did our best trying to live while also dying.
We read to her a lot…me. Caregivers. Audiobooks.
Never as much as you would REALLY like–I share the same struggle with reading to my precious little peanut–but probably more than average.
As the days were coming to an obvious end, I ordered a book I remembered distinctly from my childhood, HAWK, I’M YOUR BROTHER.
I didn’t know it would be the last thing we ever shared…I honestly thought there was more time. The Hospice nurse guessed about a month–our crazy concoctions had fixed a few issues we were battling and there was no longer anything glaring at finality.
In the dynamics of my own marriage, my husband is usually gone for the hard things. Through no fault of his own, it’s just the way it has always gone and for that reason I believed my mom would pass away a few weeks later, while Carl was in California on business.
I was convinced of this, and comfortable with it.
So, when I sat down by her bedside that Saturday afternoon to read, I believed it was only another moment together in a lifetime of moments together.
The hawk is on his shoulder, ‘Fly now, bird. Go on.’ [The book reads.]
The hawk turns. He moves his wings…
Maybe he jumps a hundred times before he seems to catch the wind, before he lifts himself into that summer sky.
At last he soars. His wings shine in the sun and the way he flies is the way Rudy Soto always dreamed he’d fly…
The bird looks down and then he calls a long hawk cry and the sound floats on the wind…”
“I love you, Mom,” I say as I leave. “I know you know how much I love you.”
In hindsight I can see I was speaking her language–of freedom and soaring and permission to go–through a book uniquely part of our childhood.
I miss you, Mom. I don’t actually think you know how much I miss you.
You took her all the way to Dallas?” The Hospice nurse asked incredulously.
I could hear her eyes roll through the phone.
Today is my mom’s 82nd, and final, birthday.
What the judgy (but also incredibly efficient) Hospice nurse doesn’t realize is that I have had a lifetime of conversations, with my mother, about color and art and beauty.
Those are important things, my mom would say, that help to create a life.
And while my mom is clearly dying, she is also still living.
So we loaded up and went to VAN GOGH: THE IMMERSIVE EXPERIENCE where we were surrounded by music, light, dimension, and history.
“Look at the wall, Jojo. It’s beautiful,” my son said.
My mom has an unmatched gift for covering walls with random artwork and making it look like they were created to go together. Spending her birthday celebrating art makes so much sense.
When my mom was (mis)diagnosed with ALS in 2017, she wasn’t sure she would make it to her next birthday. “This isn’t it, Jojo,” I told her. “I mean take the medicine, because I am not a doctor, but I am not convinced.”
We traveled tens of thousands of miles, she and I, chasing hope, and have spent ten times that amount trying to find not yet discovered answers.
My Dad funded a research study we knew wouldn’t be fast enough for us.
Brutal diseases beat even the most determined into submission, and Progressive Supranuclear Palsy has done that to us. “I am so, so sorry, Mom, but I am out of ideas,” I tell her. “You have people who love you here on earth, and people who love you in heaven. No matter what, you are loved.”
The book of Job tells us that our days are numbered by the Lord; With each day that passes, my mom’s number eeks closer.
So whether the Hospice nurse understands and approves or not, we will fill her days with beauty.
And the other thing that nurse does not know is this: I am my mother’s daughter. I will do what I damn well please.
I know it’s preposterous to say that I am stunned, but that’s exactly how I feel.
My brilliant, valiant, warrior of a mother went home to heaven on Sunday, September 12th.
I thought we had a few days more.
The resilience my mom has shown over the course of her life is remarkable. The resilience she showed facing death unparalleled.
“You have had such a great life,” I reminded her. “The day after your 40th-anniversary party you told me that if you died then, you had all you could have wanted. That was 17 years ago.
You have done well.”
She has kids who love her, grandkids who think she hung the moon, and great-grandkids that will hear all the stories.
I always say recovery is part of the fabric of my children’s lives because they each attended countless AA meetings with their Jojo. They met the people. They smelled the coffee and cigarettes. They listened to discussions of life, lived one day at a time.
She helped countless people learn a sober way to live.
My mom was an avid shopper. Under the Christmas tree always looked ridiculous once Jojo showed up with her presents.
She loved clothes and shoes.
She was remarkably healthy except for one terrible disease.
She tried nearly every crazy therapy I brought her way to fight a disease with no cure. Except the hyperbaric oxygen chamber–that was a “no”. She was claustrophobic.
She was a reader and a book buyer. There were thousands of books in her home. She was so smart.
She and my Dad traveled the world with retired judges. They traveled the country with their animals in a fifth wheel. They spent weeks in Hawaii in a time share.
She had a wonderful life.
She died peacefully in her sleep.
We made it through a patch several weeks ago when she was in pain and anxious. Once we got over the hump, we got back to all the crazy oils, and lotions, and crock pots full of warm washcloths and my mom died both comfortable and virtually medication-free.
We honored her decades-long journey of sobriety.
We surrounded her with caregivers who loved her.
Every night my son would help her over to see my Dad, and he would kiss her goodnight and tell her he loved her.
While I was in church yesterday, praying for my mom and listening to a sermon about heaven, my mom was getting ready to go…
The last words I said to her the day before were, “I’ll see you tomorrow Jojo. I love you. I know you know how much I love you.”
For whatever reason, we never really talked that much about my mom’s life as a child. There really is so much that we don’t know, but my Uncle David has been kind enough to help fill in the gaps.
Lora Jo Kuether was born on September 1, 1939, in Chillicothe, Ohio. This is one of the first things I did not know. The gentleman at the funeral home asked me, “Chillicothe. How do you spell that?”
“Ummm…I’ll have to get back to you on that.”
My mom always reminded us that September 1, 1939, was also the day that Hitler marched into Poland…so life for everyone on the planet was eventually impacted by the day my mom was born.
Her family then moved to Pelham, New York, where my mom grew up. She had one older sister and two younger brothers. They lived on a dead end street where they played ball into the night using manhole covers as first, second, and third base. Her Dad would holler, “Joey, Butch, Davy NOW!!” When it was time to go in.
When my mom was in junior high and high school she’d roll back the rugs in the living room and host sock hops. She was a cheerleader. She played on the LaCrosse team. She’d walk to church on Sundays with her mom—her Dad was already there because he was a Presbyterian Minister.
What I didn’t know until recently was that HIS dad was also a Presbyterian Minister…a respect worthy line of people who served the Lord.
When my mom was 12, her parents purchased a 21ish acre lot on Livingston Rd in Laconia, New Hampshire. It had a two room cabin, kerosine stove, and a well in the back. There was no running water. My Grandma Rithy named it “Hi Larkin”.
Her Dad bought a tent to put in the back where the kids slept on old army cots. Her brothers slept in the tent for much longer than my mom, who eventually joined her sister Annie and worked as a chamber maid at the Wicwas Lodge, where they got free room and board.
My grandparents made everyone work on that cottage to make it livable. They nailed floors and walls and dug a cesspool and well. That home stayed in the family until after my grandmother passed away and my parents bought it. And the grandkids would tell you the upstairs was not as livable as they professed, with the tilted walkway that you needed to traverse to get to the upstairs bedrooms.
In her final years, my grandmother was forbidden to go upstairs. Safety first.
After being tenderly and generously cared for by my uncle and aunt, my grandmother, too, peacefully passed away in that home, while my mom was on a plane to be by her side. Now she is by her side. I’m sure they are still talking and laughing together.
Hi Larkin burned down years later.
My mom went to Wilson College in Chambersberg, Pennsylvania, where she received her Liberal Arts degree.
After graduating from college she spent a year abroad in the Netherlands. When her parents and brother visited her there, her Dad bought a red Volkswagen that they drove around Europe in.
My mom named the car “Rubin” which meant RED in German.
She lived in the Netherlands with her best friend Kitty, who was originally from California, so when they finished their time abroad they moved to San Francisco, where my mom met my Dad—a law student at Cal State Berkeley.
They married in the spring of 1964, and soon moved to the Central Coast. My dad was first an attorney at Bill Wright’s law firm until he was appointed to the Judicial Court by then Governor, Ronald Reagan.
Meanwhile my parents were growing their family first with their son, Glenn, then daughter April, and third and final me. Three kids under the age of 5.
They were crazy.
Our childhood was full of books. Their home literally had thousands of books in it, and their decor was centered around custom made bookshelves. The Pokey Little Puppy; The Tawny Scrawny Lion; The Bad Children’s Book were all read time after time after time.
She was creative. She wrapped presents in the cartoon section of the newspaper tied up with string. We made God’s Eyes with sticks from the oak trees in the yard and colored yarn. We learned how to paper mache.
She loved laughter.
I remember Saturday mornings when we were supposed to be doing chores and my brother would be laying on the living room floor watching the THREE STOOGES. My mom would let him slide from working because she just loved to listen to the sound of his laughter. His laughing filled her with joy.
She was outspoken. When my sister, who was a gifted athlete, would make a great play in the field, my mom would holler from the stands, “NOW YOU GET DINNER.” I didn’t know that my mom’s love of watching my sister play sports was, in part, because she was a gifted athlete herself.
My athletic skills are more like my father’s.
She volunteered in the classroom and corrected the teacher’s grammar. “ALOT” is not one word, it’s two. “LETS” needs an apostrophe every time.
She was a stickler for proper English. While at the dinner table, if one of us kids asked her to “Please pass down the milk,” she’d put it on the floor.
There. It’s down. We were proud of ourselves for remembering the please.
When we were all teenagers, my mom went back to school and got her teaching credential and master’s degree in English.
She was so smart.
In 1983, after an intervention planned by my father, my mom went to a recovery program at Cottage Hospital in Santa Barbara to deal with her addiction to alcohol. There she learned the fundamental basics of living ONE DAY AT A TIME…she became an active member of the Alcoholics Anonymous community, known as AA.
My mom, however, really needed a group that was just called “A”. I mean, when the queen of oversharing joins an organization based on anonymity it is problematic.
All three of us kids have memories of saying, “Moooommmm, the person behind you in line at Cornet’s doesn’t care that you are a recovering alcoholic.”
She overshared all the time…I remember after one of my brother’s little league games, at Shakey’s pizza, my mom telling all the other parents exactly who my sister and I had crushes on.
I didn’t know then how much I would simply miss the sound of her voice, even if it was oversharing.
In 1991, my parents moved to Marin County where my father became the special master to the courts for Buck Charitable Trust. My mom plugged in to AA there, volunteered, and worked with the aging population highlighting available community resources.
Long after the desire to drink had stopped, she kept showing up to meetings. “Some one was here when I first came,” she’d say.
But my mom’s real zest for life sort of began with becoming a grandmother. “JOJO” was her name, and grandkids were her fame.
She once gave me a card that said, “Perfect love sometimes doesn’t start until the first grandchild.”
She took them all to AA meetings. She went to dance recitals and ball games and birthday parties. She showed them how to compost. She let them stay at her house when they needed to. She taught them how to make a hospital corner on a bed.
She bought a ridiculous number of Christmas presents.
She and my Dad moved back to the Central Coast.
They traveled in their 5th Wheel, so they could take their animals with them.
They traveled the world with retired judges going to Alaska, and Cuba, and Europe.
Then they’d come home and invite everyone over and bbq ribs and steaks and before every meal they would lift their glasses in gratitude, toasting the blessing of their lives.
Years later my mom would say that was an important ritual because she could feel things starting to go awry, and she wanted to live one day at a time, grateful.
She loved adventure. She asked my brother to take her for a ride on his Harley, and he happily obliged. She and my husband began a tradition where he would take her flying in his plane every year on her birthday.
After we moved to Texas, Carl took it upon himself, each year, to take her to her AA birthday meeting where she’d get her chip and he’d eat cake. Once she lost the ability to speak, Carl would share and tell the community all about her beautiful journey of sobriety.
In a gathering like this, where the statistics are clear that someone here is struggling with some kind of addiction, I know my mom would want you to know that 90 meetings in 90 days can change a life. She would tell you that you, too, can have a beautiful and vibrant and sober life.
She believed that to core of who she was.
She believed that you could trust the process.
That when things get chaotic you should get really still.
That you could take a trip not taking a trip.
That bad things that happen are just AFGO’s.
That the old timers had a lot to offer.
That whether the disease is addiction or Progressive Supranuclear Palsy, living one day at a time is the only rational solution.
But the blessing of recovery inevitably follows the burden of disease. Our own personal and family dysfunctions color the lenses through which we see the world.
One of the things I did not know untilI put together the slide show we are about to see was this: MY MOM WAS BEAUTIFUL.
I spent my entire life not seeing it. I knew she was smart and funny and loyal and fierce, but somehow I didn’t see this. I don’t know how I missed it.
My prayer is that we all leave today just a bit more in tune with the abundant beauty that surrounds us…able to see clearly, as I see in the slide show, that things we perhaps have looked past for a lifetime, are here and waiting to be enjoyed.
Every month my online friend, Heather, hosts a link up where we share SOMETHING LOVED, SOMETHING READ, SOMETHING TREASURED, and SOMETHING AHEAD.
It is a great practice of reflection, and (when I am paying attention) gives me something to write about.
I loved my mom’s memorial service.
It was beautiful, and very appropriate for who she was.
I loved getting to see familiar faces.
While on the plane home from California, I started this:
I am still numb after the loss of my mom, and distracted by trying to help my Dad, but I will be massively shifting to new priorities come January.
Homeschooling with excellence and consistency will be at the top of my list.
My college student daughter spoke at her Jojo’s memorial service.
She was beautiful and eloquent and tender.
I was so proud.
(I do not currently have a photo of this…but will when the photographer send them to me.)
Life without my mom.
Life without trying to help my mom die as comfortably as possible.
These are all things on the horizon.
My world is currently off-kilter, but I know this, too, shall pass.
I look forward to the future. I am grateful my mom is no longer suffering…but I lament the loss of her words and stories.
I BEGGED my mom to write her memoirs, and she never did…so my little family is learning how much we never knew and I am inspired to come back–even if just sharing FOUR SOMETHINGS–to put things down so that my kids will have them, someday, should they want them.
My online friend Heather hosts a monthly link up, helping us to gather our thoughts, remember, and (for me evaluate) something loved, something read, something treasured, and something ahead.
I have participated almost every month in 2021…which is stunning. I find that I am very grateful for the moments of pause it requires…the chance to think about what I want my life to actually be. I am grateful to you, Heather.
May was a full and wonderful month.
I am in a season I refer to as STUPID SELF CARE. I call it that, tongue in cheek, because I am naturally a person that would rather avoid all that “nonsense”. I would prefer to just gut out the hard times and move on.
But that is not how life works. Also, as my kids are engaging in the world as adults, I find I really want them to practice good self care, so I have to act as though it matters. And, as it turns out, it does actually matter.
In that spirit, because this season with my parents is HARD–not just for me but also for the people who care for them day in and day out–I hosted a SPA/SELF CARE DAY for my parents’ caregivers.
I coordinated with the establishment where I do yoga and counseling. We had a custom Restorative Yoga session, then each woman received a one hour massage and 1/2 hour NuCalm session.
I had food and drinks and gifts set up for them to enjoy in between sessions.
Living Well has a lovely pool area where we hung out, soaking in the beauty.
One precious woman told me, “This was the very best day of my life.”
Here’s the thing: I suspected that if I handed out gift certificates many would go unused.
Caregiving is hard and holy work, and the kind of people who do caregiving are often the kind of people who put themselves last. That practice (of putting yourself last) is actually not in my parents’ best interest, I explained.
“I cannot offer you job security,” I confessed. “My parents are old and ill. But I can promise to appreciate you while we are in this together.”
I could offer it to them because I was familiar with the location by practicing self care myself. I lovedthis day. It was a wise thing to do for my parents, because taking care of the people who take care of them makes for much better days for everyone.
May was a good “reading” month. On Audio I finished Mike Rowe’s The Way I Heard It, which I absolutely loved. Ryan and I also finished a couple of Penderwick stories…getting her to appreciate audiobooks as much as I do is a process that is not going as well as I would like.
In addition to these, I also read Matthew McConaughey’s Greenlights, which was very entertaining.
The format for The Dept. of Speculation was wonderful. Was it a novel? Is it her memoir? I am not exactly certain.
That SoundsFun, by Annie F. Downs was okay. It’s a very easy read with some great parts, but I didn’t necessarily leave the book dying to dig in to All Things Annie F., if you know what I mean.
I always love Lysa TerkHeurst, but my by far favorite was Maybe You Should Talk To Someone, by Lori Gottlieb. When she wrote, “Yes, I’m seeking objectivity, but only because I think objectivity will rule in my favor,” on page 38, I was a fan for life.
By the time I reached page 70, I ordered a copy for a dear friend in California, and had it shipped to her. It is incredibly entertaining with great nuggets of wisdom tucked in.
This is an easy one: My mother/daughter trip to Gulf Shores, Alabama.
In my prayer journal I often beg the Lord to help me create a life I love, in the midst of the life I have.
Reagan was at a new school, with a new major (hopping from a writing major to a Biology major/Chemistry minor at a school 5 times the size of her first college is not for the faint of heart), in the middle of a global pandemic, with a huge class load. It was the toughest semester she’d ever had.
Because I am in the aforementioned Stupid Self Care Season, I told her that when one is in the midst of a temporarily stressful time, it is wise to schedule in a break. “Help yourself recover,” I told her.
Sun, sand, and good food are helpful in that quest. I wanted to try someplace we had never been before, so Gulf Shores got the nod. Reagan flew from Vermont to Pensacola, and I drove to pick her up so we could spend a few days together.
We went on a dolphin watching cruise.
She told me she has taken to bird watching and has an app on her phone which helps her identify species and keep count of sightings. So, I handed her my camera, and told her to have fun.
Everywhere we ate had delicious food. We devoured peach French toast and Eggs Benedict; Burgers, fries and milkshakes; delicious steaks and scrumptious seafood. She can get on the thin side when she’s stressed, so I loved feeding her whatever she wanted.
We read books, rested, and talked.
I think she is so beautiful.
I treasured every single minute.
It’s my very favorite. I will keep homeschooling because it is going well, but the afternoons at the pool and FINALLY trekking to the water park are always a delight.
We are visiting a local town for the 4th of July, which we are looking forward to, and I am meeting my BREAKFAST CLUB friends from California in Ft. Lauderdale soon after.
And I look forward to reflecting on my Four Somethings in June, grateful for the opportunity to do so.
My online friend, Heather, hosts a monthly link-up called SHARE FOUR SOMETHINGS: Something Loved, Something Read, Something Treasured, Something Ahead. Bless her and her diligence. She is currently on an extended family road trip visiting National Parks. You can follow her trip on Instagram!
Wow. This should be much easier than it is, and this is why this is such a good discipline.
But as I sit and think, one thing comes to my mind: My kids. In particular, my older kids.
My son moved here to help care for my parents, and I just LOVE having him around.
My daughter is having a TOUGH semester at school, and I have planned a mother/daughter getaway at the beach for a few days when the semester is over to help recover. I can’t wait.
Parenting is haaaaarrrrrrddddd. I have failed ridiculously over and over again. I require an enormous amount of forgiveness and grace on a regular basis. But I sure do love my kids. (98% of my actual in-person life is doting on Ryan, so there’s no harm in leaving her out of this one.)
I finished Searching for Sunday by Rachel Held Evans. I expected to both like it and dislike it much more than I did. Like it because I had REALLY high expectations for her writing style. She is highly regarded within the liberal Christian culture, so I think I expected her to be so moving and eloquent it might make me re-look at my conservative values.
I expected to dislike it because I wondered if it make me question things, or look at my faith differently. (I wondered if I would be defensive.)
MANY of the points she makes I have made to others in my own journey. But the parting of ways comes to this: she seemed to think she believed what the Bible taught incorrectly rather than considering that people lived what the Bible taught incorrectly. It has heightened my resolve to really know what the Bible teaches and how it applies to me. (Which has me on the craziest journey through Proverbs 31…but I digress.)
I am also reading the devotional Seeing Beautiful Again by Lysa Terkeurst, and How To Do The Work by Dr. Nicole LaPera. Summer is coming, so a few novels will be mixed in…
I treasure Tuesdays.
My precious little peanut spends all her time with her mom and dad. We adore her. We treasure her. We protect her.
But it makes for a small world, that is not particularly in her best interest.
It has not always been this way but life circumstances, followed by a pandemic, have created our own, personal dysfunction.
Recently I hired a tutor to come work with Ryan on Tuesdays. I get all the activities prepared, and they spend hours together. At first Ryan wasn’t thrilled, but this last week we added decorating sugar cookies to the list of activities and things are looking up.
Meanwhile, while they are doing homeschool, I go to restorative yoga, then counseling, then lunch, the marriage counseling. It is a day purposely devoted to a better, fuller life and I am grateful.
Actually, there is a LOT to look forward to in large part because of my Tuesdays. There are patterns I am putting an end to, which means that the future looks brighter in several areas.
I am becoming a person with better habits spiritually, financially, and emotionally. I will add better health habits in the future, but for now I will praise the progress where the progress is.
And, of course, I look forward to a few days at the beach with my college student daughter!!
I am resting on Proverbs 31:18: She senses that her gain Is good.
Ohhhh…Bless Heather for her diligence and faithfulness. Each month she hosts a link-up highlighting Four Somethings: Something loved; Something Read; Something Treasured; Something Ahead. It’s a great writing exercise, and a kind-of center base for life. Taking the time to reflect is always a good practice…
Can we chat for a minute? I mean really, as though we were having coffee together.
This month I have loved good counseling. I found a delightful woman to spend an hour with each week, and an insightful gentleman to spend an hour with my hubby and me each week.
We have a lot on our plates. Many, many (most) couples with special needs kids don’t make it. Our daughter is an utter delight, but she definitely has special needs.
My mom has a terrible disease. In the various online forums for people with the disease, or with family members who have the disease, there is a lot of talk about assisted suicide. It’s that kind of a diagnosis. My dad is not the man he once was, and falls all the time. Last week, after having already been to the ER or doctor’s appointments on 4 separate days and not wanting to go again, I let him shout as I pulled staples, from his last fall, out of his head. I gently tugged out fifteen staples in total, with only 4 good yells. That was not a bad ratio.
***Several months ago I had to take my mother and father to the doctor’s office because they each had staples that needed to be taken out. We are very well known in the doctor’s office so it was no real surprise when the Physician’s Assistant looked at me, handed me the staple remover, and said, “You really should have one of your own.”
All that to say, this gal needs help. And counseling is a really good idea.
Something Read (Or, in this case, Said)
Several of the other joiners in Four Somethings are prolific readers. They inspire me to read more…next month.
I started The Road Back To You and Searching for Sunday but haven’t finished either.
I had a friend message me on Facebook, looking for help. He has a precious young (kind of like a) daughter, who struggles with the role of women to submit, and asked if I could help talk to her about it. I am always happy to try, knowing I may fail. I will write much, much, MUCH more about this in the future, but this is what I said:
We have done society an enormous disservice by centering this conversation around the woman’s obligation to submit when the heart of it succeeding is the responsibility of the man to serve and lead. In the two primary places this is discussed–the home and the church–if the man is fulfilling his obligation before the Lord, the context is far less controversial.
If a robber comes into a home with one bullet in the gun, it the husband/father’s responsibility to take the bullet. The “submissive” act is to stand behind him and allow him to honor his responsibility (to lay down his life for his family) before the Lord, as the leader of the family. In God’s formula, the husband always looks to his family’s best interests first. Submitting to the best interests of everyone involved is not an act of weakness, or being less than…
Just because many most men are failing at this, it does not mean God got the formula wrong or we have somehow misunderstood. It just means men can be dumb.
And this is why I need counseling…I, too, have some heart issues that need hammering out.
I cannot say enough. 2021 got off to a really rough start caregiving wise.
My son moved from Virginia to East Texas to help, and I could not have gotten through without him. We have used 3 different companies since December 1st: One I fired. One dropped us. And one still remains. (I feel like the Goldilocks of daughters…”Too hot!” “Too cold!” “Just right!”)
I hired several private caregivers I thought would be wonderful and they, too, are gone. My parents are a LOT of work, but I am happy to say, now I think we’ve got it! In addition to the 24-hour care they require, I have people for saunas, showers, massages, exercise, outings, trips to the fitness center, and house cleaners. We are planning outings and hoping for improvements. I am so, so grateful. (And grateful my parents did well financially so I can pay for it all.)
For those of you in this season of life, or heading into this season of life, I humbly acknowledge that there are family members genuinely dissatisfied with the care my parents have. They regularly share their dissatisfaction. “[This person] clearly thinks they (my parents) are being mistreated,” is something I have heard several times. There are seasons in life when knowing you are doing your very best before the Lord is enough, and other people’s opinions can’t register.
That is also something I treasure.
Well…getting more centered in my own life feels like it is on the horizon.
I now have quartz countertops, which makes my kitchen functional! I am cleaning more, homeschooling better, getting the right help in several areas, and summer (my favorite season) is coming.
There is hope. And a lot, a lot, A LOT of work to get there.
***This was originally posted in the LOVE OF DIXIE MAGAZINE…
The car reeked of chlorine. I sat in the parking lot, my daughter still in her swimming suit, basking in the significant progress she made in just a few days of aqua therapy.
We flew nearly 3,000 miles to get help. The speech therapist we sought out then connected us with an aqua-therapist who worked her magic in the pool. Ryan learned how to control her airflow enough to blow a whistle. She began to learn to swim. It was incredible.
There, in a rental car warm from the summer sun, the most overwhelming grief washed over me. Tears were uncontrollable as I sobbed and took deep breaths. Pulling out of the parking lot—leaving behind these women who helped my daughter so much—I learned an incredible truth: We only grieve what we are grateful for.
I was profoundly grateful for their help, and I was desperately sad to go home and face the challenges alone. Again.
Several months later, my daughter and I drove hundreds of miles to a week-long swimming clinic for kids with special needs. I watched more gifted therapists, in the pool, with more precious kids.
The first day a beautiful, curly-haired, autistic preschooler screamed and cried the entire lesson. The instructor was unphased and upbeat. The little girl’s Daddy was steady and confident, but her Mom had to walk around the corner and collect herself.
Sometimes you just need to catch your breath.
The second day, the precious cherub only cried for 20 minutes.
The final day that brave little champion jumped in the water, laughing and splashing. This time it was her Mom who sobbed the whole way through, tears of joy and enormous pride staining her cheeks. It is difficult, sometimes, to put into words what an incredible privilege parenting special needs kids is.
They are warriors who muster tremendous courage to do things that come easily to most people. They add color and texture to the ordinary. However, this parenting road is not without costs. Those costs, unfortunately, can be relationships.
My college-student daughter shared with me the experience of talking about her sister with her friends. As she explains what our life is like, they stare pityingly, with wide-eyes and jaws open. “She’s actually one of the happiest people I know,” she assures them.
People who are not in the throws of dealing with special needs kids often don’t know what to do or how to think about it. Nearly a decade and a half into this journey, I have ideas about what might be helpful to parents who share a similar story to ours. If you have friends whose kids are unique, perhaps this will give you something to consider.
Our boundaries are often tighter than yours. My daughter almost always needs to be in my eyesight if we are not at home. While wandering and exploring is joyful and necessary to typically developing kids, it is dangerous for mine.
We have been at family events where everyone wanted to go for a walk down long winding, unstable trails, unaware of what that would be like for Ryan. We are not party poopers or lazy, but some things are not realistic for us. There are homes with trampolines or tree houses that we end up avoiding because the price of dealing with them makes the experience overly draining. Physical coordination is not something we can take for granted.
We would love someone to stay in the kiddie pool with us. For over a decade we had season passes to the water park, as did most of our friends.
For the first few years it was delightful because we were all in the same season. We had toddlers and traded off helping; one mom at the top of the slide, one mom at the bottom. Our chubby babies laughed and splashed, sliding down slides, getting all the vitamin D one could want.
But then the other kids grew and developed. While they were bounding around from adventure to adventure, their moms were laying out getting tan. Meanwhile, my daughter (who had finally learned to walk) and I were still in the pool with the little people. I would get her situated at the top of the slide and tell her to wait, then run down to the bottom to catch her.
I entered a season where it was far lonelier to go to the water park with friends than to go by ourselves, so I stopped going with friends. I understand that moms need a break; hanging out and chatting is soul-filling, but I would have loved someone willing to stay in the kiddie pool with us.
Sometimes your kids should experience things that are not fair. Once my daughter and I were at the park, swinging. She was safely tucked in one of the toddler swings, steadily flowing back and forth. She was having a blast. She swung for a long time.
Another child wanted the swing. The Mom said a little too loudly, with a tone of irritation, “I guess you just have to wait until they are willing to share.”
The fact of the matter is that there are many things kids with special needs cannot do, or participate in. Because of that, when something works and is loved we may let them continue beyond what the watching world thinks is their “fair share.” And we may not apologize for it.
Our kids are a gift. We are doing the world a favor for raising these precious people. They are funny. They see beauty in unique places. They give the gift of forcing us to slow down and breathe deeply. They simplify a tightly wound world.
My daughter is a joy spreader. When she was an infant a seasoned specialist looked at her, smiled and said, “She really is remarkably sweet, isn’t she?”
Yes, she is. She can’t talk. She sometimes learns after being introduced to things ten thousand times. It’s not a fast process, but she is wise in her way. She loved her grandmother with Alzheimer’s with so much ease. Her expectations of people are inspiringly low.
My world is infinitely more vibrant because of our journey, and yours will be too if you have friends like my precious little peanut.
When she was just two days old we were getting ready to check out of the hospital, totally unaware of what the future held. Our beloved pediatrician came to examine her. After many strained minutes looking and testing, his face softened. He put his hand on my leg and said in a gentle tone, “I am so, so sorry, but I would put your baby in the category of there’s something not right, but I don’t know what it is.”
Stunned, I took a deep breath and replied, “On the wall above her crib I painted Genesis 1:31, ‘And God looked at all He had made, and indeed it was very good.’ I guess it’s time for me to figure out if I really believe it.”
With that, our journey began. I got the joy of figuring out those were not just words painted on a wall. I don’t only believe, I know. God created my daughter and, indeed, she is very good.
My online friend, Heather, hosts a monthly blog link up.
I am an infrequent, but always welcome, participant.
Reading through my post from nearly a year ago, I was a tad bit (hugely) depressed to see that I was looking forward to a remodeled house almost a year ago.
Guess what my “Something Ahead” could be today? You guessed it. A remodeled house.
You may not be surprised to learn that my marriage has seen better and easier days than these we have now…but I digress.
It’s true it was inconvenient, and many in other parts of my state suffered enormously. I am not minimizing that in any way.
But it was breathtakingly beautiful.
In this case something said because I FINALLY finished the audio of Brene Brown’s I thought It Was Just Me, But It’s Not.
She is brilliant and I love her words. (For those who may wonder, YES, her politics are too liberal for me, but I can easily set that aside to dig in to the wondrous information she has about humanity.)
In the book she says something along the lines of, “Shame always results in fear, blame, and disconnection.” I am digging and reflecting with a huge desire to make sure those things are no part of my relationship with my grown kids.
I am homeschooling well for the first time in a long time…
I took the time to write out my real goals for my daughter and our life as a family. As I thought and prayed, I realized the absolute most important thing was to ensure my daughter was tired at the end of the day.
Our nighttimes were getting stupidly hard, and the real reason was she was understimulated during the day. Painful to acknowledge, but that became the focus of planning the rhythm and routines for our schedule.
We have not yet reached perfection…but we are on our way to much better.
I treasure that.
There were some $%^$&**y things that happened in January that I am still recovering from. Caring for aging and infirm parents is not for the faint of heart.
But I am close to having a routine for them that delights me. YAY. Infrared saunas, massages, balance board therapy, the gym, the salon, lots and lots of walks, and lunches out. I told my mom, “I don’t want you to never again see a sunset because you are sitting in your chair watching Fox News.”
Just over the hill from their home is Lake Palestine, where the sunsets are beautiful.
My now non-verbal mother still has a poet’s heart. I am constructing a team dedicated to infusing beauty into her days.
My once-brilliant jurist of a father, as it turns out, has a deformed tongue that resulted in a lifelong case of sleep apnea. The sleep specialist walked me through what happens, explaining that his brain cells are dying from lack of oxygen while he sleeps.
That makes so much sense.
We are hoping to fix that problem and stop that decline by the end of next week. I am constructing a team dedicated to movement and stimulatiion and fuller days.
I am hiring a tutor once a week for my precious little peanut, who isn’t little anymore. This will anchor our week and help her learn to interact with more people.
And, of course, someday I may have a remodeled kitchen.
You know the ones. Those that when you see it in someone else, it makes you go, “I don’t ever want to be that person.”
The ones that cause pity to boil up from the little-thought-about depths of our humanity.
Some days I cannot believe this is our life. Her life.
My mother, who spent our entire childhoods oversharing, cannot talk. She is fed by a tube. She has no use of her right hand and painfully little use of the left.
Communicating is a grueling process of pointing at letters on a laminated printout of the alphabet. I say I want to get a high priced, eye gaze technology communication device for her, but the paperwork sits unattended.
There are always a million plates spinning.
I often don’t like reality.
I prefer hope.
I want to believe that if I find the right vitamins and do the right therapies and hire the right people my parents might get better.
Everyone looks at me like I am nuts, and I am beginning to think they are right.
Lord, I really want to live a life that honors YOU, but I admit I also want a bit of the miraculous to spill onto my mundane.
There is so. much. mundane.
In the span of ten days, as I am trying to create a thriving routine for both my special needs daughter and my special needs parents, people have had car problems, kidney problems, the stomach flu, tooth aches, seizures, electrical problems, allergies and an impending snow storm.
I need to take a moment and say, “Back off, Satan. You are not welcome here. You will not reign. YOU DO NOT WIN.”
The enemy of my soul desires my destruction and if he cannot have my destruction he will take my discouragement.
He cannot have it.
I start again tomorrow. Praying for progress and peace.
Searching for beauty. Trying to grow. Making things I can control better while accepting the things I cannot control might very well get worse.
The days are winding down fast and Election Day will be here before we know it. This is an election of enormous consequence.
When it comes, may we know we did all we could do. Then let’s remind each other the results are God’s.
Many are wondering, WHAT CAN WE DO?
I’m glad you asked.
Pray. Pray fervently and often. Consider joining me in fasting every Tuesday between now and the election. (I allow myself drinks, and finish fasting at 6:00 pm.)
We need to pray for our President and our country; for unity and wisdom, AND we need to be praying for the opposing party. May they be humble and wise. May the scales fall off the eyes of people who refuse to see. May each of us come to know God better and rely on HIM more during this season.
Donate. Small amounts add up. Much of the Republican fundraising is funneled here. Have a garage sale and donate the proceeds. We NEED to keep the Senate and the White House, but we should try to take back the House as well.
Serve. If I still lived in California, I would call Joe Collins’ office and see how I could help. WHY NOT help Maxine Waters retire? Make phone calls, walk precincts, answer phones, send out mailers…anything. Do you know who is running in your district? Can you help them?
Keep it positive. There is enough division. Let’s rise above it. Keep it simple: Republicans want safe streets, funded police, school choice, to open back up quickly after COVID, and low taxes. No name-calling. No foul language. No pointing fingers…just steady reminders of what we are building toward.
This is our time.
We women can make the difference for our families, our future, and our fundamental beliefs.
Do not let people shame you for supporting President Trump. There are abundant reasons for doing so. Here is just a shortlist:
Lower taxes. This has made a real difference to many people.
Higher wages. Prior to COVID wages were actually increasing across all demographics.
Energy independence. For the first time in 70 years, we were a net exporter of energy products. This has a profound impact not only on opportunities here in the US but helps to shift the balance of power around the world. (Can you recall one significant radical Islamic terrorist attack, anywhere in the world, since the US became the #1 oil producer? I can’t say for sure those two things are related, but I do believe fewer oil dollars in the pockets of terrorist funding regimes is a good thing.)
ISIS is gone. We need to not forget the days of ISIS running through villages in the Middle East, beheading all the Christians, and taking all the teenage girls as sex slaves. It was horrific. It is done.
Peace agreements for Israel and Arab nations. This is huge. This President literally cannot do anything to get kind words from the left, but this is a really, really big deal.
The Supreme Court. Enough said.
This election is poised to be a fundamental shift in demographics.
The Republican umbrella of low unemployment, better trade deals, a strong military, and supporting law enforcement so our streets can be safe speaks to people of all races, colors, and creeds. No longer is this the party of rich, white people.
It is the party of dreamers.
In 2020 The Republicans did not offer a new platform for the convention. It was not a litany of promises and “this is what we will do for you if you vote for us!” Instead, they boldly stood firm on the promises made in 2016. It was a political party saying, “This is what we are doing, come join us!”
They celebrated what was working: The wall is getting built. (No more caravans from South America.)
The economy was the best on earth. (It will get back to booming.) Republican policies work.
They talked about wanting to restore order in cities across the nation.
Meanwhile, this summer, Chaz (or Chop, or whatever it’s name was) in Seattle had to be shut down after a few short weeks. The dreams of spaghetti potlucks and a summer of love crumbled in the face of violence. In June, the Minneapolis City Council unanimously voted to defund the police. In September they wondered where all the law enforcement had gone.
The differences in philosophy about keeping cities safe could not be more stark.
Let’s agree that protests do not cause property damage…Riots do. Think of all the cities that are being ripped apart by protests and riots. This article talks about the 1 billion dollars in damage caused by rioters since May. Of those cities being ripped apart, how many are run by Democrats?
I encourage you to take the time to look it up.
“Let us first examine the political leadership of the most dangerous American cities, large and small alike. ‘Danger,’ for purposes of this analysis, is defined in terms of the number of violent crimes committed per 1,000 residents. Four categories of violent crime are included in these calculations: homicide, rape, armed robbery, and aggravated assault. The statistics regarding the incidence of each of these crimes in each city were derived from FBI records and were published in 2019 by the custom analytics website NeighborhoodScout.com.
The following chart shows the 50 cities that have the highest violent crime rates in the United States and: (a) have a population of 25,000 or more; (b) are governed by mayors who are clearly identifiable as either Democrats or Republicans; and (c) have either a “Mayor-Council” (MC) form of government, a “Council-Manager” (CM) form of government, or a Hybrid (HYB) of the two.Of those 50 cities, 46 are governed by Democratic mayors and administrations; only 4 are governed by Republicans. Moreover, 42 of the top 43 are governed by Democrats.” –frontpagemag.com
Do you realize the President already signed an Executive Order requiring police reform and better training? And that he passed the FIRST STEP ACT–prison reform to undo the Biden-authored Crime Bill of 1994 which incarcerated African American men at a much higher rate than white men? He advocates for school choice. He is fighting for equality across this land, and it is reflected in the polls, even if it is not reflected on Twitter.
We can do this.
We can be kind and loving to the people we disagree with and relentlessly move forward with saving this nation. We can learn, and then articulate kindly what the better choice is.
We can vote and encourage others to vote as well. We are women. We can do anything.
We can sit on the Supreme Court, run winning Presidential campaigns, hold high offices, and love our families and communities with honor, grace, and effectiveness. We can celebrate people, even when we disagree on policy.
We can be the people we want the other side to become. Are you with me?