I want them not just to become comfortable with the water, but to be strong swimmers. Both for their own safety and possibly strong enough to help someone else, should the need ever arise.

When I search my memory for when exactly this priority became so imprinted on me, I find a few things. Back in 2002, the summer before I graduated from high school, two young men from my hometown area drowned in a swimming accident. One was the 16 year old brother of my friend Janene. Being 16 myself at the time, this made a huge impression on me. I still remember the sadness of that visitation—the thick, almost stuffy, air quality of the room. The silent, choking grief of his family and loved ones. The reverberations of shock to our community, with so many people knowing both boys.

Then there was the time my Dad saved his friend from drowning. I wish I could remember the date and location and I hope (as I do with all my memories now) the story was written down somewhere, but of course I can’t ask anyone for the details now with both Dad and Mom gone. But all I know, is that Dad & Mom were out boating and swimming with some friends, when one of them started struggling and thrashing in the water and going under.

Dad jumped in to help, as he was a strong swimmer. His friend, (about 6 feet tall and probably 250 pounds) was no small man, and Dad remembered trying to help him but getting drug under by his friend’s panicked struggle. Eventually my Dad was able to circle around behind him, putting at arm around his neck to pull him onto his back, and then with his failing limbs out of harm’s way, begin to haul him to safety.

I loved hearing the story. I was so proud of my Dad. It took such strength and courage to willingly help someone in need at the risk of your own life. Unfortunately the irony is not lost on me that the man Dad saved outlived him after all.

Then there was the time when Hayes was 2 years old when we lost him for about an hour or so. I was folding laundry and talking on the phone when all of the sudden I realized I hadn’t seen Hayes in a while. I made a quick check through the house, but didn’t take time to check every closet or hiding space because my mind could think of only one thing—the creek. There is a creek that runs alongside the length of our property and beyond. A favorite for fishing and swimming and wading but also a source of anxiety in the years when I had little non-swimmers. I called Randy to come help and then some neighbors came, and soon it seemed we were all combing the countryside for our little son. I was in full panic. I remember thinking of other places I should probably be looking but I could not tear myself away from the creek. I didn’t want to find him there, of course, but I had to look. I ran up and down those banks, breathing frantic, desperate prayers. I thought of what he was wearing last, what glimpse of color I might find, what little rubber boots.

A neighbor on a side-by-side took the gravel path from our house towards the pellet mill, and found him walking the fields along the way, not very far from the creek’s edge about a 1/2 mile from home. He was probably on his way to visit his daddy at the mill. I fell to the ground and sobbed when he was brought back to us, not caring who saw or what anyone thought. I was infinitely grateful and deliriously relieved and shocked at how it only takes a single moment to change everything.

But maybe the desire for a knowledge of swimming doesn’t come from any of these things. Maybe it comes from the surety of knowing that no matter what we plan or prepare or protect, we are not in control. Losing my parents and having a devastating medical diagnosis for a child has taught me that over and over. I remember having many conversations with my Mom about fitness and health—she just did not understand why it was such a priority for me. Whenever this topic came up she would invariably say the same thing, “Think about cousin Carol! She was so health-conscious and always making the most healthy food and being so picky about what she would and wouldn’t eat…still died of cancer.”

“But Mom”, I would push back, “that’s my POINT. There are countless things in this life and this world that you can’t control. So why not control for the things you CAN?”

I don’t know if she ever really came to share my viewpoint. And it is true, to some extent any control we think we have is practically an illusion. But we still wear our seatbelts, and eat our protein, and teach our kids to swim.

I’ve had my illusion of control shattered completely over the past two years. I did my absolute best to have healthy pregnancies and drug-free births for the optimal health of my children, and still got blindsided by a genetic disease. I make it a top priority to cook all of our meals and prioritize protein and whole foods in our home, and we still battle unhealthy relationships with food and cavities. I try my best to daily model activity and fitness as a priority, and I still have kids who choose to be sedentary.

There is so, so much we cannot control.

This applies too, to the bigger things in life. We try so hard to provide a safe and loving environment for our kids all the while knowing it is still not a fool-proof guarantee that they will never face harm or suffering. We try to instill in them values and teach them truth, and they still have the free will to walk away from it all. There is no blueprint. There is no one-size-fits-all A+B = C.

But painful though the lesson may be, it was never about control—it’s about surrender. I know this in my heart of hearts, but I don't want it to be true. I tend to fight it with fists clenched, sure that just around the bend at some point in this whole journey I will surely find a way to scrabble together some semblance of control. “That was a close one” I will think to myself, reflecting on the 3-year span of my life in which I had no control. And of course we all know how ludicrous this notion is. But that’s the thing about illusions—they’re deceptive and misleading. And the illusion of control is a heady one. It starts early on with us thinking we are the captains of our ship, the architects of our destiny, the pilot of our path.

Spoiler alert—we’re not. And if you haven’t had the illusion spoiled yet for you, you most likely will very soon.

Maybe I will always struggle a little bit with control. I know my mother did. Right up until the very end, she had preferences and opinions and particular desires that she made very clear and known. It didn’t always make sense to me but I tried not to fault her for it. It is soul-crushing to be facing a diagnosis with no hope and sometimes you just fixate on anything that you can still operate on your own terms, no matter how silly it may seem. And all the while she was holding on to these tiny, little outward areas of control, a cancer was spreading within her that she could not control, taking everything from her. It’s not shocking that we don’t actually have control, it is shocking that we ever get fooled into thinking we do.

So we teach our kids to swim.

Fully knowing that this is no immunization from the perils of life in this broken world, but it is one more tool in their toolbox that they might have the chance to use one day. And hopefully with each tool we add to their box, we are gaining some new ones ourselves. Ones that teach us how to surrender, let go, and trust the process.

And then we get up the next day, and we do it again.

]

So I write today, to remind myself then.

Last week was William’s birthday, June 25, which is the right hook punch after the uppercut of Charlotte’s birthday on June 18. They are 3 years and one week apart. And we get to do it all over again in September, with Archer and Hayes being 2 years and 4 days apart. The spaces of these two birthday pairs being more reasonable than the space between William and Archer, which is a mere 14 months—almost Irish twins. I’ll never forget that feeling of having a 5 month old baby and finding out I was pregnant. I was so embarrassed I didn’t tell people until I was 16 weeks along. But while those early years were a bit of a blur, it was so wonderful seeing them grow up with a built-in-buddy to do everything with.

I suppose celebrations come in twos in this family, with Jocelyn sharing her birthday with Jesus, at 5 days before Christmas. Randy shares his April 8 birthday with our April 11 anniversary and I guess I share my birthday in a bittersweet twist of irony, with “national grief awareness day” on August 30. But those ‘national days’ always seem made up to me, because you can also find evidence supporting that August 30 is National Beach day and Toasted Marshmallow Day. So I guess you get to choose between celebrating your debilitating loss, going sunbathing or eating s’mores. Your guess is as good as mine.

In any case, the birthdays/holidays/special events in our family each year seem to try their best to kill me, or at least give me a fresh crop of gray hair. I want to enjoy them, I do, and I love a good party. But I always sink under the pressure of expectations, strapped with the guilt of dropping the ball or missing moments, and there’s the piercing nostalgia of how quickly time is passing. Hayes was convinced I had never even thrown him a birthday party at all, and told me so last year. This was mostly due to the fact that he had only had 6 birthdays, and I told him he probably didn’t remember the first 3 of them due to be so little, but that information didn’t seem to help. For his 5th we had gone to the zoo, but that “didn’t count” because he didn’t have all of his friends there with him.

And even though I know these dates will come on the same dates every year, they always seem to catch me by surprise. I always feel a prickly sense of dread with my children’s birthdays—it’s the combo-platter of feeling time is flying by and they are growing up far too quickly, never feeling like I’m quite doing enough, and hoping we are making all the good core memories and not too many of the sad ones. (Courtesy of the movie Inside Out, giving existential parenting dread). I am trying to learn how to combat this and actually enjoy my children’s birthdays more, but I always feel a little out-of-sorts and a bit floundering.

I started the day as I normally do, getting dressed for the gym and then picking up the house a little, running the dishwasher, and switching over a load (or several) of laundry. I will never cease to be amazed at the amount of laundry our family can produce. I try to do 3-4 loads a day and I am never caught up. We are also at a solid 2x/day dishwasher runs, and that is even on days when we aren’t all eating dinner together. I don’t even know where the dirty dishes are running off to multiply and divide, but they rival rabbits at this point. I made myself some espresso and filled my water bottle with electrolytes and creatine. I heated up some egg bites for breakfast that I keep in the freezer for a quick pre-gym breakfast on mornings I just don’t have time to cook eggs.

Then it was time to start rounding up the kids. The three boys were headed off to their last day of basketball camp, and the two older girls were coming with me to the gym. I was hopeful at least one of them would be willing to do the workout of the day, and if not, maybe use the bikes while watching the rest of us. During this summer schedule of lots of down time and lounging, I like to try and at least have one part of the day where they get some movement in. For some of my kids it happens automatically and without any input from me (like a 3-hour basketball camp and hours of playtime outside). For some of them, it only happens with great intention and prompting, and I am constantly dancing this fine line between letting them relax and have their summer vacation and also trying to keep them active and healthy. I don’t remember my parents having to do this one time, or day, EVER. We just roamed like feral country bumpkins through the woods and creek, exploring and climbing and swimming and biking and disappearing most summer days. I wish I could ask them about it now but I’m guessing they would give some non-helpful answer like “just relax and not worry so much”. And then I would tell them how I feel like our culture is changing and kids just want to be more sedentary now and I have to parent differently than they did, and I don’t know how. But I’m trying.

So off we went to the gym, with a kitten in tow, because my daughter wanted to show the other kids. We ended up leaving it in the car though, because the last time we showed up to the gym with a kitten I saw the look on one of the other members’ faces and I thought I might have to turn around right then and head home. In that member’s defense, there was a record-breaking 19 kids in attendance at the gym that day, in building that is not very large, and seeing the kitten was just the tipping point. Thankfully the kids behaved great and it all went as well as we could have hoped for.

Anyways, where was I? Ah yes, we were at the gym with a kitten. The Q.O.T.D. (question of the day, if you haven’t read my other post about this) was a dumb one. “If you were abducted by aliens, would you tell anyone?” Sometimes the questions are great and thought-provoking and actually teach me something about the others there, and sometimes they are just nonsense. Today was one of the latter. Every once in a while they don’t have a question and ask for suggestions, in which case I usually try and think of something that I’ve done recently that I’m trying to ascertain whether or not it is erratic behavior—so I will frame that in a question to poll the general public. For example, “If your jar of honey was infested with ants, would you throw out the honey or would you filter out the ants?” Things of that nature. (For the record, I would definitely filter out the ants).

So we warmed up and worked out. Charlotte joined in, Jocelyn opted out. She was dealing with large blisters on the sides of her feet from the friction of her shoes. The inward pronation of her feet is getting worse, with her arches completely collapsed now and flattened. Her feet drag and rub against her legs when she tries to walk, so of course this results in little interest in physical activity. It is discouraging (understatement of the year) to watch her mobility decline, and I desperately wish I could fix it, change it, even take it myself.

The lift that day was a combination of power cleans. I started loading my barbell and trying to get my head right. My mind was on Jocelyn and my heart felt so heavy. Any amount of weight added to my bar felt infinitely lighter than the weight I carried inside. The inability to do anything to change or fix a circumstance in your life that feels irretrievably broken is a particular kind of weight—solid and immovable, squeezing the air from your lungs and dragging your limbs. I’ve gotten somewhat used to the feel of it and sometimes forget how much it has changed me until I see someone else who is not living under than kind of weight. Free and buoyant, they seem to bounce a little through their life and step so lightly through their circumstances that they leave no marks behind. It is when I see those people that it brings the stark contrast into view of the weight I carry. Because I remember what it felt like when that breastplate of granite wasn’t there.

Afterwards, I drove back home for a shower and change, and completed a few more household chores. Before long it was time to pick up the boys from basketball camp, and watch the little demonstration they had of the skills they had been working on. My three boys were all on the far left, which made photo/video taking much easier. I admired them, the fierce concentration on their little faces as they did over-and-backs and figure eights. Each one is so competitive—I worry sometimes that they will compare themselves to each other, because we all know that doesn’t get us anywhere good, and I hope they can see the unique ways in which they are all skilled. I have seen that comparison tear siblings apart and I am determined to raise mine to be lifelong friends.

After they finished the demonstration and got their popsicles we headed out. We had a birthday to celebrate! Sweet William had been anticipating this birthday since approximately New Year’s Eve. I remember talking to someone in what must have been March, and he said earnestly, “It’s going to be my birthday soon!” And I had to clarify that it was June 25th, and not that following Tuesday, or whatever that person must have assumed upon hearing “soon”.

The plans today were having a friend join him for basketball camp, and then a few more join him after that for mini-golf and eating at Red Robin. We got his free birthday drink at Dutch Bros and then swung by the dollar store to get a few candles and balloons. I dropped the girls off at Safeway to recycle cans, and went in to buy a birthday cake. I far prefer a homemade cake but some years call for a Safeway bakery one. The girls bought Starbucks with their recycling earnings. I always feel like it ends up being a waste of money (and this time one of the drinks got accidentally spilled on the car floor, popping boba and all) but I figure if they do the work of the recycling, they get to spend the money.

Then we were off to the races, heading back home before the other guests arrived. I had just a few minutes before guests would be arriving so I tried to switch over the laundry once again. This is where I get into the most trouble with time management, this blind optimism toward what I think I can get accomplished. I darted across the laundry room linoleum and my shoe landed in a soft, wet pile of something and slid, while I windmilled my arms to catch my balance.

Cat poop.

Of course it was. Someone, at some point in our morning, had let a cat inside and it had graciously bestowed upon us an aromatic gift, right where it knew I would surely find it, on the chaotic floor of my overflowing laundry room. I groaned, removing my shoes to soak, and grabbed the bleach and paper towels. I fought the threatening waves of a full-on melt-down, as some of the guests had already arrived and I needed to at least somewhat present as a non-crazy person, so they would entrust me with the care of their children for the next 4+ hours.

Once all the boys were assembled, we headed out to mini-golf. If you have never had the pleasure of mini-golfing with 8 young boys and keeping score for everyone, let me tell you, it is no small feat. I should have only paid for them and played the sole role of scorekeeper and photographer, but I just can’t help myself. You have to keep the boys humble by beating them at their own game now and then, so I kept score for everyone AND played. It was…probably about exactly how you think it would be.

Our next stop was Red Robin, and the drive there in the car was filled with all of the various sights, sounds and smells that 9 pre-pubescent boys can emit. I tried to play the well-loved “Sideways stories from Wayside school” to calm them down, but it was too hard to hear anything over the din and wasn’t really effective. They seemed to be enjoying themselves.

We arrived to Red Robin and I started trying to figure out my ordering strategy. As a general principle, I like to get waters for everyone but I didn’t think that would quite fly for a birthday, so we got lemonades and sodas. (I never called it soda before moving to Oregon, I only ever called it pop, but you’re the odd one out if you call it that here and so I converted.) Strangely a lot of the boys wanted pizza, which would not be my go-to at Red Robin, but we went for it. We ordered burgers and fries for those of us that wanted them, and pizza for the rest. I had brought in what I thought was an ice cream cake, but ended up just being cake, probably because I picked it out so quickly. The waitresses lit candles and sang to William and he got his free birthday sundae that he was very excited about.

Typing this all out now, I feel a little sad about how I didn’t just let him be excited in the days (weeks) leading up to his big day. I got so impatient with all of the many, persistent, endless questions and inquiries when really, I should have just really entered into that excitement right along with him and allowed him to have it. I wish I was better at managing my stress and just enjoying life alongside them. After all, birthdays come but once a year.

Two of the boys got picked up early for their baseball practice, and the rest of us headed home. I made a stop at PetCo because I needed to get new sand for William’s turtle tank, but it turns out Russian tortoises shouldn’t really be in sand anyway, they should be in bark mulch, and we have plenty of that at home. But the boys sure loved the stop, oohing and ahhing over the crested geckos and bearded dragons, hairy tarantulas and milk snakes. A pet store is the perfect place to spend some time with a bunch of 9-11 year old boys.

Thankfully we made it home without any mishaps and then the clean-up began. I hadn’t even hosted the party in my home, or cooked a single meal in my kitchen that day, and I STILL spent over an hour cleaning up. I don’t even know how that is possible. The mysteries of the multiplying dishes persist.

I scurried around, picking up people’s discarded shoes and socks and hats, half-empty sparkling water cans and trash that never found the receptacle. I spot-treated stains on laundry and deep cleaned a towel from the aforementioned cat poop situation. I walked around outside, watering some plants and filling the empty dog feeder and hearing my mother’s voice all the while, “You’re doing too much Shelley! You should be having your kids help you! They should be doing these things and then you wouldn’t be so stressed and overwhelmed.”

And of course, she is right. I shouldn’t be feeding the dog and watering plants when those are perfectly acceptable chores for children to manage. But then it still takes my time and energy to corral them, instruct them, remind them, oversee them, moderate them, etc. And sometimes it just seems a lot easier to do the dang thing yourself. I was folding blankets and hanging up some shirts in the boys’ room when I noticed how clouded and green Archer’s poor fish tank was becoming. I knew how much it bothered him when he told me “He didn’t even want the fish anymore because he felt so bad for it” and so I took that downstairs to clean out.

It’s hard to remember all I did for the rest of the evening, and this post is already far too long, and so I will not belabor it. And I don’t write this to somehow claim that I work harder or more than anyone else. Goodness knows I don’t, and we all have our own loads to carry. I just write it to remind myself, that when I feel like I’m not really doing anything at all, it is full of all kinds of things that we don't hardly register as ‘things’ at all. We are such a success-obsessed society that we don’t count all of the effort and love and angst and turmoil that goes into the most ordinary things of the day as things worth counting.

But they do count. That’s all.

The Clarity Planner is no ordinary planner. It has pages for reflections on the previous month and favorite memories, as well as orientation for the month that lies ahead and goals and tasks that accompany it. Each day has little boxes to check and neat little bullet point rows to write in. Lists of “weekly rhythms” and “habits to cultivate” and “things to do”. I truly began buying this planner because I desperately hoped it would bring actual clarity into my life, as per the title. Sadly, I don't know if that has been the case.

But the perhaps the area that remains the least-filled section of the entire manuscript, is the tiny box in the lower right-hand corner of each daily page with this heading, “Today I give thanks for…”

It is a good thought, a noble intention, to be sure. After all, surely we all have so much to be thankful for and could at any moment list a multitude of things that our hearts could be filled with gratitude for. But for some reason the ink in my pen always runs dry right before that little square. Oddest thing.

I blink at the empty box—a steady, pulsing beat like the vertical line that begins each blank page on your computer screen before that first word of type. The only paltry things that come to my mind feel ridiculously inane.

That first cup of coffee in the morning.

A beautiful sunrise.

New personal record lift at the gym.

Long hot shower.

And of course I could write these things, just as anyone could find something to write, but I don’t want to. And maybe I don’t want to because of all the things I want to write about, and cannot.

I want to write about how thankful I am to have my parents still living—healthy and whole and helping me with my kids. (Heck, even living close by while we’re at it with the inconceivable fantasies.) I want to be thankful for their daily advice, constant listening ears and valued input. Especially when I need it the most on this daily, mountainous task of raising my kids.

I want to be thankful that I don’t have to walk this road of a devastating medical diagnosis alone, and that I have their faithful love and full support each step of the way. I want to be thankful for the way they show up for my daughter, and fill in the gaps where I can’t. But of course they’re gone, so I am relegated to being thankful that I did have those things, if only for a time.

Then there are the host of things that remain unknown and unseen to anyone who has never had to walk the road of raising a child with a disability. And of these things, it seems not even the greatest stretch of imagination can provide a point of gratitude. You want all of it to be different. You want all of it to change. You wish none of it had to be part of your story. But it is. It just is. And how exactly does one find a way to be grateful about that?

My friend Esta wrote on her Substack (find the article below) and wrote about creativity being more about obedience, rather than inspiration. It’s worth a read.

Esta

A Warm Hello (and a little Goudge giveaway)

The proud purple stalks of the Camas have started to fade in the ditches and even the bright balls of Rhododendron flowers are drooping. The wild roses are blooming along the railroad tracks and in the backyard the bees have found the blackberry blossoms. The strawberries are ripe at Hazelwood Berries and the pollen sits in a yellow mist over the grass …

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3 months ago · 13 likes · 55 comments · Esta Doutrich

This rang a little bell of resonance within me, as does much of what she often has to say, as I had never really thought of it in those terms before. I had felt it before in an intuitive way, whenever I wrote, or sang, or served in some way because I knew I ought to, not necessarily because of my feelings. But I hadn’t quite put it into words. When I read that, I almost immediately thought, “That’s how I need to approach gratitude.” Not as following a feeling, but as heeding a command.

I’ve joked before about how often my mother would remind me that “There is always something to be grateful for” in almost a chastising way. I strongly disliked those moments of being continually pointed towards giving thanks when I just wanted to vent or rant or mourn my circumstances for a little.

But now I see how true it is, and how my Mom’s methods, although prickly, were not too far off the trail of truth. We have to choose to see the good. It isn’t a magic cure. It doesn’t change all of the things we wish were different. Because that cannot be the goal. There are many things that happen in this life that we simply have no power at all to change, and so we can’t wait for the answer to those things. The answer may never come. I don’t think I will ever know why some of this had to be part of our story.

When I wish I could give thanks for family hikes and activities we all do together, instead I will give thanks for the beaches will easy entry points that avoid steps and climbs. When I wish to give thanks for grades or test scores and a successful first year of high school, I can instead give thanks for the teacher who closed our our IEP meeting with prayer, which felt so timely and deeply needed.

I’ve found nearly the only way to truly claw my way to gratitude these days is to zoom in my focus until I am nearly peering through a pinhole with binoculars, and find some small, tiny thing to be thankful for. “This is a great cup of coffee.” “The sun is out today.” “I really love this song.” “I love the feeling of clean sheets on this bed.”

No it doesn’t magically solve any of our big problems and it doesn’t cure my depression and it doesn’t rewrite the stars—but it does, for a moment, give me reason to feel grateful. Maybe this is all we can do, really. We spend a lot of time waiting for everything to line up and for all of the things in our lives to feel like things we are grateful for. But maybe that time will never come.

So through gritted teeth and closed fists we can choose to say, “Thank you for getting me through another day.” And maybe it won’t always feel this way.

And maybe one day, all those tiny boxes in my planner will get filled.

But sometimes the questions pose a little more cause for reflection. Or if you’re like me, Mount-Everest-scale of overthinking. Of course there are levels to answering questions of any kind, and in order to not seem insane, you have to know how to play along. For example, when the question is “What is something you’re scared of?” I know the universally understood, socially acceptable answers they’re looking for are more along the lines of ‘snakes’ or ‘heights’ and NOT

“Slowly forgetting the sound of my parents’ voices until they’re gone forever”

“Not being able to find a way to help my daughter thrive in spite of her debilitating illness”

“Never finding my way back to seeing God as good and spending the rest of my life feeling resentful and bitter”

Yeah, those are definitely not the answers anyone is ever looking for. So I just say ‘sharks’ instead. But the other day we had a question that stopped me in my tracks a little. I am usually quite capable of skirting around the difficult ones and giving the expected answer, but this day I just didn’t have it in me. The question was “Name an accomplishment you’re proud of.”

My mind went blank. BLANK. “What have I accomplished? What am I proud of? Is there anything?” Of course I could think of a few things, but it felt a little weird and trite to say something like “A 300# deadlift” or “1st place at my first CrossFit competition”. In the light of the whole of our lives, those things felt pretty insignificant to be the one thing you listed when asked about your achievements.

This of course led to more over-thinking…what even qualifies as an accomplishment? Some people were saying their kids, which is a sweet thought, but are they really our accomplishments? I don’t feel like that’s something I can credit to myself, for better or for worse. My kids are their own people, separate and distinct from me, with their own strengths and weaknesses, character flaws and merits, motives and aspirations.

Specifically, having a daughter with an incurable disease has made me aware of the fact more than ever, that we really cannot determine the health, success, or outcome of our children’s lives at all. We don't even determine our own, so I’m not sure what ever gave us the idea that we could for someone else, but we are tempted to think it, nonetheless. We can give birth to them, feed and clothe them, nurture, raise and train them as best we can, but we still do not have control. I had 5 natural births with no epidural because I was determined to set my children up for the best possible start in health and wholeness, and in spite of all my intentionality and crunchy-granola approach to life, my genetic code betrayed us all.

And that DOES make me feel culpable. Responsible. Guilty. “But you didn’t know! It’s not your fault! You couldn’t help it!” people say. Doesn’t help, doesn’t change it, doesn’t absolve me, or at least that’s how my brain works. And I fully realize this aforementioned brain is the one probably liable for how difficult it is for me to think of something I’m proud of. I know that if you asked other people they could list things. Why is it so impossible for me?

I have a friend at the gym who does daily affirmations. She has them printed out and takes them with her, speaking them aloud and claiming them for her day and her life. She sent them over to me one time, because she keeps insisting I need to do them too. She is right, of course. I certainly need to start my day saying things like:

“I am whole and healthy, capable and strong. I daily use my body to grow in strength and serve others. I am one with my husband in our goals and we are working in unity for the betterment of our family.

I love God, and am loved by Him. My pain is not invisible to Him, and He has plans for my good, whether I can see it or not.

His mercies are new every morning and today is a new day. I have the tools I need and the strength from Him to walk through whatever this day holds, and with Him I can do all things."

And I really do have to start saying them, even if just to be able to tell her I have been saying them, the next time I see her and she asks me. I need to start praying again too while I’m at it. It’s not that I’ve stopped talking to God completely, but calling our conversations ‘praying’ would be a little like calling heavy metal screamo a lullaby. But I guess if God could handle David asking him to break all the teeth of his enemies, he can probably handle my tear-filled rants.

During one of my last visits home to spend time with my father as he was dying, I was again faced with the impossible task of saying goodbye. This happened time and time again from October to January, because each time I traveled back to Iowa I never knew if it would be the last time I saw him alive. This time, he had spent several weeks in the hospital and had decided, in a 180-turn of events, to try chemo instead of his decision the day before to proceed with hospice care. This felt completely devastating to me, because I felt like it would rob us from whatever time at home/quality of life we had left to spend with Dad. But that is another entire post for another time.

In the next few hours, I was going to board a plane headed back to my own family in Oregon, never knowing if I would see my Dad again. The reality of it was crushing me. I could hardly speak. And I realized, as I tried to verbalize some sort of last words to him, that some of my pain was self-centered. It made me feel guilty for even thinking it, but I spoke it aloud anyway… “I just wanted you to see me accomplish something big. Now even if I do one day, you won’t be here to see it.”

I realized then, and I still realize now, how selfish it was of me. There he lay, suffering in agony and literally dying, and there I was, lamenting the fact that he wouldn’t see my ‘great accomplishments’ whatever those might be one day. It’s like telling someone drowning in the ocean that you’re bummed they won’t get to see you hit some sick jumps while water skiing. Trust me, there are some things I would go back and do differently if I could. But that’s the thing, we only get one run at this life. There are no dress rehearsals. And you only get to have last conversations with your dying parents….well, a few times I guess.

But what he said next will stay with me forever.

“Oh Shelley. You’ve already established yourself on the farthest horizon I ever dreamed.”

Of course now I can think of an answer to that question I wish I would have given—I am proud of the accomplishment of giving tribute to my parents at their funerals. Of being able to say goodbye. Of writing their obituaries, putting pen to paper for some of the most painful words I’ve ever had to write. Of the particular grief of selecting photos for slideshows. Of somehow carrying on through daily life, showing up for my family and pressing on, one day at a time, with a weighted vest of pain and sorrow strapped to my chest. Of that accomplishment I am proud.

And while it is true, that daily affirmations would do me a world of good and I need to find a way to pray again, maybe it’s ok if I didn’t have an answer to that question of the day.

Maybe we don’t always need to know or realize the accomplishments we are proud of, because others know them for us, and are there to remind us of them when we cannot see.

She wanted to go somewhere sunny, as did I, and so that narrowed our options pretty quickly, living where we do way out on the West coast we wanted to avoid cross country travel or a long day of connecting flights. So this led us to Phoenix or California, with CA winning out because of flight prices and times. After we had decided on a destination, we planned out our stay. We would go to Magic Mountain Friday, and shop/swim/relax Saturday before heading home on Sunday, short and sweet.

Friday dawned sunny and clear, and we headed off to the theme park feeling the butterflies of nerves. She had never been on a big roller coaster, and I had, but it had been over a decade (or maybe two) and I wasn’t sure my 40-year-old constitution had the same tenacity my 19-year-old self did. And there was only one way to find out.

After consulting chatgpt for the best approach to the day, we had a plan. And it would have been perfect—aside from the tiny detail that the rides it outlined to hit first thing, were all of the most intense ones. This accomplished the objective of avoiding all the longest lines, but unfortunately it also hijacked our fight-or-flight response and we had to fight off an impending sense of doom and nausea for the rest of the day. In retrospect it would have been nice to work our way up to it all a little more instead of jumping in the deep-end head first, which is precisely what we did.

The energy in the crowd was contagious, with everyone piling up at the starting line like we were joining a marathon we didn’t know we’d signed up for. I could sense that we weren’t the only ones headed for X2 and Tatsu. It seemed everyone there was trying to make it to one of those two rides first. When the park employee opened the gate I wondered if a stampede might actually break out. But then we had to run up a hill and it weeded out about 70% of the population pretty quickly. This is where my CrossFit training came in handy, and I kept running which scored me a spot in line toward the front.

So far chatgpt knew exactly what it was talking about. Drive early to avoid congested LA traffic, arrive to the park early and the moment gates open head straight for X2. Check and check. But then we actually had to ride it. And this ride is quite simply, not for the faint of heart. Here’s what someone else had to say about it,

“There’s nothing else quite like it in the U.S.,” Thompson says of the coaster that, in its original form, opened in the early 2000s. He praises its stats: “full 360-degree rotating seats on a 20-foot wingspan over 200 feet high with a vertical drop.”

“There’s a moment,” he says, “when you crest the lift and you’re looking straight down 200 feet, and then it flips you upside while you’re plummeting. No matter how many times I’ve gone on it, it always gives me the reaction of, ‘I don’t know if I’m going to make it.’ And then I make it.”

I can heartily amen the ‘I don’t know if I’m going to make it’ sentiment, because that is precisely what was running through my mind as we soared and plummeted, spun and flipped and careened, all with nothing but air beneath us. Like I said, we should have worked up to it. But hindsight is always 20/20 and you can only know what you know, you know?

Our next ride was Tatsu, which is described on Wikipedia as:

• The World’s Tallest Pretzel Loop: This is Tatsu’s signature move. It is a massive, 124-foot inversion where the train dives head-first toward the ground and then pulls through a sharp upward turn. During this loop, riders experience intense G-forces (often cited as up to 5 Gs) pushed directly into their backs.

• Zero-Gravity Roll: Tatsu is the only flying coaster in the world to feature this specific maneuver, which provides a brief sensation of weightlessness while rotating.

• The Corkscrew: A 103-foot-tall inversion that happens early in the ride, providing a fast-paced twist high above the park’s pathways.

• In-line Twist: A smooth, 360-degree rotation that typically occurs near the end of the layout, right before entering the brake run.

In retrospect, this all seems even crazier to me now than it did at the time. What were thinking? That this would be a walk in the park (pun intended)? Who did we think we were? Bat-man? Wonder Woman? I remember the primary thought in my mind as I hurtling through space and time and defying gravity was centered on my harness. If these straps or clasp fail…it’s over. Like, game over. It rather inhibits one’s ability to enjoy the ride.

But once I got over the initial panic-stricken terror, I truly did enjoy the rides. I found myself missing Dad a lot that day. He was always up for the craziest rides, and I have such fond memories of racing through a near-empty Adventureland park back in Iowa, trying to get in those last few rides before closing time. The rides always felt safer when I sat buckled in next to him. He taught me to throw my hands in the air and keep my eyes open, even when I most wanted to squeeze them tightly shut. And all these years later it’s still true—it does make the ride more fun. I remember thinking, “My Dad is seriously so cool.”

Another moment in which I really missed Dad, was when we went to the theater to watch Project Hail Mary. Dad would have just loved that movie. Shortly after we received the news of Dad’s stage four pancreatic cancer, I flew back home to Iowa to spend some time with him. One evening we settled in to watch a movie and I felt it even then—the pressure to pick the perfect film. I didn’t know if we would get a chance to watch another one together. I wasn’t going to be in Iowa for long that trip, and who knew how this cancer would progress and what time it would or wouldn’t allow us. The realization of that finality choked me—how can one actually choose the last movie they get to see with their Dad? A person that means so much to them, not to mention the one who introduced them to their love of film in the first place. The one who always gasped, reacted and threw back their head and laughed at all the perfect parts. The one who introduced them to Indiana Jones and The Fugitive, The Truman Show and Second-Hand Lions. Movies that did not just entertain, but impacted you at a core level, shifting your perspective of Story forever. One does not simply walk into Mordor, and one also does not simply select a movie to view with your father for the last time.

So after much deliberation, I chose Interstellar.

It is one of my all-time favorites but now, unfortunately, I’ll never be able to watch it again without feeling that gut punch of sorrow. As if that one scene with McConaughey wasn’t heart-wrenching enough, just try watching it after you’ve lost both parents and have all kinds of wistful memories and regrets. Like I said, not sure if I’ll be able to watch it again.

And now, all these years later, they’ve done it again. Project Hail Mary is one of those golden films that manages to make you really feel things. I was trying to decipher what all I loved about it—science fiction isn’t my go-to when it comes to movie genres. But this one had heart, humor, and a platonic male/female relationship which still held deep connection, which was incredibly refreshing to see.

I loved the message of something being asked of a person that they are quite sure they’re incapable of, and yet circumstances outside of themselves propelling them forward into opportunity. I find that is far more often the case in our lives than giant, heroic leaps taken intentionally to “save the world” or “find our destiny” or whatever. It’s just never quite that black and white. At least it never has been for me. Anyway. I don’t want to give any spoilers, so just go see it.

There was no shortage of good food on our trip. I could have indulged in the poke at Bear Flag all weekend and the burger at the Yard House was maybe, quite possibly, the best burger I’ve ever had. And I’m a burger gal, so I do not say that lightly. One night we tried this Cuban restaurant that was definitely too fancy, but also very delicious, and we had the famously freshly-made Sidecar doughnuts.

I convinced her to do a little thrifting, mostly because I was so curious to see what people in Orange County California donated. She is not normally a huge fan of thrifting, but she indulged me, and actually ended up enjoying it. There were aisles upon aisles of quality brands and so many great pieces that it was a good thing we traveled only with personal bags or I would have been tempted to take a giant suitcase-ful home.

It was hard for me to pull this trip off, and I’m not sure all the reasons why. Randy was (and always is) in full support of me going on these little trips even though it does require him holding down the fort at home. He tries to do his part to make sure trips like this are possible because we both know how fast this time is going to go with our kids, and these are the times together that they will remember forever. It’s just my own brain, getting overwhelmed with figuring out all the details and losing motivation to do anything other than the day-to-day.

Turns out, one of the things I was most nervous about—LA traffic—was no problem at all. I weirdly loved it. Everyone drives so aggressively and unnecessarily fast, weaving in and out of lanes recklessly. It feels like you just casually merged onto the Indy-500 and I am HERE FOR IT. Another thing my Dad would have loved.

It was such a special time with Charlotte. She is so smart, clever, and has a great sense of humor, but it comes out of hiding and truly shines during one-on-one time. I also know and understand well that as the 2nd born, she can feel overlooked sometimes. Her older sister has a lot of doctor appointments and needs a lot of our time and focus these days, and our 3 boys (only 3 years between them all) form a close-knit cluster of wild energy that is making a constant demand for the rest of our time with all of their sports and activities. I know she can feel lost in the shuffle, not that life at 13 going-on-14 is ever that easy to begin with.

So this trip was a really special time for me to get to see and hear her—like actually see, and really hear, without 4 other voices crowding in for my attention. Something I’ve been made painfully aware of in the past two years, is that life really is too short to not take every opportunity we have to spend time with the ones we love.

If you have the chance to do something like this, don’t wait. Buy the ticket, book the flight, make it happen.

You won’t regret it.

1. Pretty sure they don’t mark time in Heaven or celebrate certain days or holidays, because what even is the concept of time when you’re going to live for eleventy-billion years and only then be just getting started?

2. In some ways it seems like she has been gone for years already. I still don’t know how that whole thing works—the warped timeline of losing people you care about. Suddenly memories seem like both yesterday and a decade ago, the time you last spent with them feels like it just happened, and also happened so long ago you can hardly remember it, and everything in between seems lost in the whirling vortex of a wormhole of time.

This is one of the last formal pictures I have with my mother, taken at my younger sister’s wedding. I don’t particularly like it because it just makes me feel sad. You can tell I am making a valiant effort to smile past the tears, knowing full well this is very likely one of the last times I will see my mom alive.

She looks a little sad too, which might well be for the same reasons, but might also be due to the fact she didn’t like my dress. She thought it was far too close to white to wear to a wedding, and told me so as I walked into the church. I had tried hard to follow the suggested color palette, with the added instructions of “thinking of light, springy florals” that coordinated with the wedding color of sage green. Also, when I was buying it I asked the cashier who seemed younger and much more fashion-savvy than I, “Do you think of this dress as cream?” To which she replied, “No, it’s chartreuse green.” So I bought it.

The wedding had been planned for Oregon in July but was last-minute moved to June in Iowa so that Mom, in her failing health, could attend. We had about two weeks to find clothes for everyone and tickets to fly our family of 7 from Oregon to Iowa, so I was feeling fairly pleased that we made it at all, and were there in one piece.

But now here I was, disappointing her again.

And of course it photographs much lighter than it appears in real life, (and for sure lighter than it appeared in the dim lights of that dress store) and so now for the rest of my life I get the added little bonus of wondering every time I see the photos, “Was she right? Was that dress completely and positively the worst thing I could have possibly worn? Is it possible to go wrong even when you are trying so hard to do right? Am I somehow innately flawed as a human, who is only mostly capable of screwing everything up, and it is only by accident and chance that I occasionally stumble upon the right thing now and then?”

My inner voice is just a delight.

I read somewhere one time that the way our mothers speak to us becomes our inner voice, and unfortunately, I do believe it to be somewhat true. No one is quite as exacting, demanding, and critical of me as my own inner voice. Sometimes I am quite sure I will never arrive—never achieve that position of ‘true adulthood’ or ‘success’ or ‘completion’ or whatever it even is that I’m reaching for. Will I ever feel “good” or “right” or “worthy”? Does anyone?

And this concept is really, quite the terrifying pressure for a mother. I feel it acutely now that I AM the mother in question as well. Will one misstep change my children’s trajectory forever? Will the fact that I’ve never quite learned how to be kind to myself secure the fate of their own inner fortitude? It all seems a little too intense. Sure we love deeply, protect fiercely, and delight wholly in our children…but we also want to be granted the privilege of being human. Of messing up. Making mistakes. Of getting it wrong without the tenuous balance of the entire universe quaking in our wake. Are we allowed that? Can we be given that grace?

And the real question is—are we willing to offer the same grace we wish extended to us, to the mothers that raised us?

I was greatly surprised and a little honored, when she allowed me to do her hair and makeup for the wedding. You have to understand, what may have seemed a typical and normal occurance for any other mother/daughter duo on a wedding day was not the case for us. She was never one for any “fuss” when it came to her hair, skin, or nails. She spent very little time on such things all the years I knew her, and I wasn’t even sure she had ever used any makeup before in her life. Turns out she hadn’t, and told me afterwards that it was her very first time.

She looked so beautiful.

I think people are so nuanced and multi-faceted, and I never stopped learning things about my mother, even right up to the end. I know many people who were unable to see both sides, and speculated and judged (wrongly) about us, summing it up in simplistic terms or labels like “they are too much alike they don’t get along well”, leaving out a whole hidden labyrinth of twists and turns, ups and downs, and highs and lows that comprised our relationship.

My mother loved me and I loved her. She was imperfect, so was I. She spoke her mind, and you never had to guess what she truly felt. You felt the full, bracing impact of it, like a natural geyser releasing hot steam. But just that quickly it was over, and she was poking your ribs in the kitchen and telling sarcastic jokes. Or getting out cards for a game of Rook. Making her famous meatballs and mashed potatoes and getting offended if people didn’t take seconds.

She had a way of making all of my friends feel like they belonged at our house. She would get out extra snow clothes or roller blades or make popcorn and smoothies for our movie nights. She volunteered relentlessly for our school, trimming hedge rows and trees, painting desks and lockers, and selling concessions at games. She always could outwork anyone I knew. And the work of her hands was the avenue in which she showed her love.

My junior year of high school, we had the harebrained idea of planning our spring formal’s theme to be “Under the Sea” and somehow convinced our parents to help assist us in turning our gym into an aquatic wonderland. This included a shimmering ocean “wall” of streamers and balloons, two giant aquariums of fish, a life-size rowboat with fish netting draped across it, a giant disco ball suspended from the ceiling, and even (unless my memory is truly deceiving me) a sandy ‘beach’.

This event included other ridiculous details that required days of work and countless hours of time hauling in, setting up, and cleaning up afterwards. Any other mother (myself included) would have put an end to the fantastical, nonsensical plans from the start and just kept things more sane and minimal, but I don’t remember her complaining, not even once. She probably just rolled up her sleeves and got right to work.

(I’m not sure why she was so worried about my dress when the real crime here was Hayes’ shoes)

I’m sure I could list 10,000 more things about Mom, and I hope they don’t fade in my memory with time. I guess that’s why I write.

She was a force of nature. There was no one like her, and never will be again. I fear I often took her for granted, but I guess that is just what we do with people we assume we will always have. Or at least have for much longer than we do. I wish I could talk to her today, about all we are facing and walking through. I wish I could hear her advice. One of the last, long, genuine heart-to-heart conversations we had was about Jocelyn, and it was amazing to me that even as she faced the end of her own life, she still had such care and concern for me and my children.

I felt her pride in me most when it came to my decisions in a life partner with Randy. All the crazy “mother-in-law jokes” never worked with us, because she loved him like a son (and maybe even more than she loved me, we liked to joke). I wish she could have seen my kids grow to adulthood. I wish she could be there for their graduations and weddings and all the milestones still to come. I wish for a lot of things.

But I am thankful for the blessing of a Mother who cared. A mother who gave of her time, energy, and love in the ways she knew best, with the tools that she had. And I hope my children can one day say the same.

Happy Mother’s Day in Heaven, Mom.

I am reminded, each time I go up there, what a sad place a children’s hospital is. The waiting rooms, the elevators, the halls. Everything is muted and quieter than a busy spring day should sound or be. When I make eye contact with the other parents I see the same dull pain reflected in their eyes. That hollowed-out look that seems to be exclusively worn by those who are walking with a child through a valley of suffering. I hate its familiarity—the instant recognition and solidarity I feel. Because I don’t want to understand. I want to say “Oh, I’m so sorry for what you’re going through!” And then give them a coffee or some flowers or a pat on the back and leave. Get into my car with my healthy child and drive away, off to their track meet or soccer game or ballet recital. I don’t want to be the parent standing there in the hall with the eyes full of the pain and no answers.

But I don’t get into my car and drive away, because I belong there, too.

Sometimes I have an impulse to touch them on the shoulder and say, “Hey, me too.” Just so that neither of us has to feel quite so alone. But then I remember that this is a club that no one wanted to join or belong to. So there is little comfort to be found in “belonging”. So I just give a little half-smile as we meet on the elevator or pass in the hall, and I hope they know they’re not alone.

The truth is, I will never get used to it. I don’t think we were designed to get used to suffering. We just learn how to endure it. There is no “getting used to”. And if there’s anything history has taught us, it is that the human body is capable of enduring a lot more than we ever dreamed it was. So on we go, walking a road we never dreamt we would, and carrying a load we weren’t designed to carry, because there is no alternative.

I just want someone to show me the way. How do I do this? How am I supposed to be your kid’s marathon time when mine has trouble walking the block? How am I supposed to be excited about your kid’s prom date or new job or test scores? How am I supposed to celebrate your kids’ hobbies and interests and talents and successes when mine faces what feels like an insurmountable struggle every day?

I heard someone online use this analogy to try and describe what it’s like to raise a child with a disability:

“It’s like you’re planning a trip to Italy. And you’ve been looking forward to and anticipating this trip for your entire life. You’ve been studying the language and imagining all of the sights you will see and all the amazing things you will do and you just know it will surpass all of your wildest hopes and dreams. And then you board the plane, and you hear the pilot say, ‘There’s been a change in plans—we are landing in Holland. And after your initial shock, you try to adjust. You do the best you can. But everyone else is still coming and going from Italy. They’re all talking about how amazing and wonderful it is, experiencing all of the things you once dreamed of. But then you realize that Holland has tulips. Holland has windmills. They even have some Rembrandts. And if you spend your entire life mourning Italy, you will miss the beauty Holland has to offer.”

And I understand the sentiment, and it some ways it is most certainly true. But in my experience it feels a lot less like a ‘detour and change of plans’ and more like landing in a destination completely unknown and unsettled and there is no road map, travel guide or mile marker to help you through. You wake each day to some new struggle or challenge, wondering how you will ever have the strength or ability to make it through. You don’t know the language, you can’t figure out any of the cultural customs or traditions, and you feel that you’re constantly failing. Every day leads you a little bit farther into the wilderness, farther from the familiar comforts of home and deeper into a path that you don’t know how to navigate.

The social worker helping me today seemed so competent and caring and informed, I was compelled to ask her how she got started in her line of work. “I also have a daughter with a disability” she answered. “So I suppose that is what started this all. And then I had to do like, a lot of school.” She laughed, and then added quietly, “I know what it’s like to get that life-changing news”. My throat felt tight with emotion and I hoped I wouldn’t cry. Tear always seem just below the surface when I go to these appointments but I don’t want to seem unstable. I worry sometimes what they think of the mother who can’t seem to handle this new life path she’s been thrust upon.

And now I am realizing that I forgot to follow that up with a question about how/what her daughter is doing today. Maybe part of me was scared to ask. But now I wish I had. Maybe next time.

I try hard not to use the term, “It isn't fair.”

Not because I don’t feel that, because I do, but perhaps because before my mother died, she ingrained into me that someone, somewhere, always has it worse. We need to count our blessings and choose gratitude. We need to look for the things we are thankful for. I remember receiving all this through gritted teeth, wishing just for a moment I could have an empathetic ear on the other end of the line, listening to my woes and offering words of comfort and reassurance instead of a rallying battle cry.

This “Pollyanna-optimsim” was usually served with a healthy dose of “You just don’t even know how lucky you are, Shelley” which was often in reference to my husband Randy, whom she thought hung the moon. She would go on to cite things like, how much he helps me around the home and shows he loves me and while all of this is true, and I am indeed grateful for him.

But it always made me wonder a little bit about what it would take for Mom to think a person did indeed ‘qualify’ for the “life isn’t fair” card. Was life fair when she was in her 30’s with two small girls (my sister and I) and lost her own mom to cancer? Was it fair when she got thyroid cancer and because of the radiation treatment, couldn’t hold and nurse my baby brother? Was it fair when she battled through all of that only to get colon cancer later in life? Was it fair when Dad got pancreatic cancer while she was still fighting her own? Was it fair when she had to pause her chemo treatment because Dad was dying and then her tumors grew? Was it fair that I had to lose both of my parents and then barely even a month after my mom’s funeral find out about my daughter’s diagnosis?

But I’m sure to all of this (and more) she would have still said, “Someone has it worse. Be grateful. Give thanks. See the good in your life. You have so much to be glad about.”

And while I still can’t ascribe to the “someone has it worse” philosophy, I know she meant well and it came from a good place of intent. She was only trying to help. But I just don’t view pain and hardship as being that linear. It’s not comparative. My hard is hard, even if it is different than your “hard”. And it is certainly true that people have faced far greater trials and tragedies and sorrows than I ever have. I know that for a fact. I have heard their stories.

But there must be a way that we can ‘bear each other’s burdens’ without wallowing in the pit with them, but also not minimizing their pain. I’m not sure my mom ever learned how to hold both simultaneously. It was very hard for her to let us grieve losing Dad because she felt it contradicted what she knew to be true about God being “all that we need”. She was afraid that if we truly entered into processing our grief, we would turn our backs on God. So she just chose not to show her grief in that way.

“But even Jesus wished the cup could pass from Him” I would remind her. “And He was God’s son. Holy and perfect in every way. If he felt those feelings, how much more do we mere mortals feel the pain of things being asked of us we are sure we cannot bear?”

But I never got my answer. Mom died, still holding on to the belief that grief and lament was almost the antithesis of joy and gratitude. And maybe in some ways, it can be. But I am certain it isn’t in all ways. And I wish she was here to walk with me through this. And I wish my Dad was here too, because he always knew the right things to say. He saw strength and goodness in me when I felt so weak and small. He had such a special way of making big things feel possible to face, and making me feel capable of doing it. I miss him so much.

It was a good day, (my mom would want me to say) because we do have so much to be grateful for. But it was also a hard day, and held a lot of hard things, and I think it’s o.k. to say that too.

Grief and gratitude, sorrow and joy—parallel tracks running side by side, throughout our lives.

My calendar tells me it has been one month and one day since my last post.

This is straying far from the beaten trail of 3 posts/month that I was subconsciously aiming for, but truth be told writing has been more than difficult lately. It has felt nearly impossible. It’s like trying to unearth microscopic nuggets of gold from the pit, but my shovel just keeps bringing up coal, time and time again. When you feel hard-pressed on every side, sometimes writing is cathartic and sometimes it is the first to go.

And lately it’s been more of the latter.

But then a friend at the gym gave me the suggestion to “pick a person and write a post about them” for endless content material. I think it’s a great idea, and I’m excited to do a series of sorts. Will it be short essays? Interviews? Not sure what form it will take, but I looked through my old drafts and found this one I’d written a little while ago about Hayes. It doesn’t begin to scratch the surface of who all Hayes is and how his mind works, so I don’t know if it will even count as one of the series, but it’s a few little anecdotes involving him. So I will post it quick to slide in under the one month buzzer, and then hopefully I will get back into some more consistent posting.

Thanks as always, for being here and reading along. It means more than you know.

________________

We all have that one kid that you never quite know what is going to come out of their mouth next, right? Well, Hayes Hendrix is ours.

“If there were two buttons, and you didn’t have a choice—you HAD to press one or you would die, and one button caused me to die and the other button caused Archer to die, which one would you choose?” The question came from Hayes, my youngest child, and most inquisitive one.

I paused, a little startled at first but also curious to see how this would play out. “I know which one I would choose.” I replied. “Do you want to know which one?” I asked.

He looked surprised at my swift decision, but did not hesitate before saying, “Yes”.

“Are you sure you want to know?” I asked, testing his resolve.

“Yes, I can know.” He answered solemnly. And I knew he meant it. Either way, he was prepared for my answer.

“Which one do you think it would be?” I asked, wanting to know his guess.

“Both of them.” He replied.

“Why would I do both of them?” I asked, puzzled. It wasn’t the answer I was expecting.

“So that neither one of us would feel that you loved the other more.”

And that’s when I told him my real answer. That I would in fact, choose to press neither button, and die myself. This led to some questioning on his part, and answering on my part. He wanted to know why, and of course it is because I love them and how could I ever hurt them, etc. And then he surmised on his own that it was because I would want them to live longer than me, which is also true. He did admit that he had a fleeting thought that I would choose Archer’s button, just because his older sister is always claiming that “Hayes is the favorite” and he was starting to believe that just maybe he was. But then when I answered he realized that I love them all.

I started typing this all down so I wouldn’t forget it. He laid beside me in our bed, watching intently as I click-clacked away at the keyboard. “You have strong hands” he observed, as I typed line after line. “I think you should be grateful for the body God gave you.” This came quite out of the blue, but as I should know better by now, was far from coincidental. Things rarely are when it comes to the words that come out of his mouth. Sometimes I’m convinced it is a special Heavenly message just for me, sent via the mouthpiece of my young son.

The timing was eerie, because for the past two days I’d been berating myself for my poor performance in the Crossfit Open 26.1 workout I’d done a few days before. I’d been ruthlessly critiquing my lack of mental fortitude and seemingly pathetic inability to push myself. I hated how much that particular workout made me feel small and weak. I hated what my body was not quite willing to do and how out of control that made me feel. I hated how my blood ran cold at the thought of doing that workout over again and the pit in my stomach that told me I wouldn’t get over it until I did. I hated that I had fallen so deeply in love with this crippling vortex of fitness, that somehow simultaneously saves me and crushes me, and I hated how I felt very much NOT enough.

But now, here was my sweet 7 year old son reminding me that I needed to, in fact, give thanks to God for the body He gave me. And he was absolutely right. Mind you this is the same son that corrected me when I was at the gym and muttered a comment about my mean coach. (This of course was said tongue-in-cheek, but seemed in earnest to a 7 yr old) “Why is he mean?” Hayes asked, appalled.

“Oh because he makes us do a lot of really hard things” I replied.

“But he just wants you to get stronger!” was Hayes’ quick defense. Gotta hate when kids put you right in your place.

Hayes is also the one who seems to pick up via osmosis my every mood and feeling. This will make him very empathetic and compassionate and the most wonderful companion, husband, father and friend one day, but for now it mostly just makes me feel like I live in a glass house. There is no hiding. “What’s wrong?” he will often ask me. “How was your day today? Was it a good day?” “I’m sorry you have so much work to do.” Or my least favorite, after I say something relatively neutral but my true feelings are simmering just beneath the surface… “I can tell you didn’t really mean that, Mom”.

The other day he told me that he knows whenever I’m staring into the fire I’m thinking ‘heavy thoughts’. Which of course is unfortunately true and promptly gave a fresh new batch to ruminate on. Thoughts like— “No seven year old child should have to carry the burden of watching his mom closely, trying to ascertain whether or not she is slipping slowly into madness, or maybe just had a hard day, or is she just pretending to be ok?” And then I start to spiral, wondering if he will ever be ok if I can’t figure out how to change and even if I can, will it be too late and will the Greek tragedy of life ruin my children??” and so on and so forth.

Half the time I don’t even know what to say in response to his little questions and observations. I just try and reassure him that I do indeed love him very, very much, and sometimes I just think about sad and hard things, but he shouldn’t have to worry about me. It’s my job to worry about him and take care of him and make sure he is feeling OK, not the other way around. And I can only hope that he can see that even though life is hard sometimes and grown-ups can get sad, that they keep going. We keep working hard and showing up and making breakfast and tucking little ones in at night and doing the best we can, with what we have, for that day.

This seems to work for a time, at least, until he has another round of questions.

I try to type on the blank page and nothing comes. The things I want to say I can’t, the things weighing on me I can’t unburden, and it all ends in a stalemate of my fingers poised over a silent keyboard, my eyes staring at an empty screen.

Much of life has been dark, hard, and heavy, and the words just do not come to process it all. So instead of hearing what I may have to say, let’s dust off the cover of our Bible and see what it has to say about the topic of suffering.

(Lots of this summary references a video by The Bible Project—they create free resources that explain the Bible in such an interesting and accessible way, check it out here.)

Let’s proceed:

Job is easily one of the wildest stories in the Bible. First off, the author is unknown, which makes me feel like it could be an unreliable narrator, except that this is the Bible we’re talking about, and the Bible is all true. Secondly, there is no clear time period, which makes this feel like a fable, but the purpose is to focus us in on the questions it raises. And boy oh boy, are there questions.

The story starts off with a court room scene of sorts, where God seems to be holding a staff meeting, and Satan is there too as the accuser, or prosecutor. God asks him what he’s been up to lately and we get his infamous answer, “Oh, roaming to and fro on the earth, seeking whom I may devour”. God then presents Job as this righteous dude who lives a blameless life, maybe to show Satan he hadn’t yet ruined everything? Got everyone to fall? Who can know.

And Satan goes on to claim that “the only reason your servant Job really loves you is because you’ve given him everything he’s ever wanted. But if he actually suffered something worse than a bad hair day, he would turn his back on you and curse you.”

And maybe the wildest part of this whole thing? God actually agrees to it. He gives the accuser (Satan) permission to basically wreck Job’s life. This is the toughest part of the story, in my opinion. It feels tragically unfair. Cruel, even. Here is Job, living holy and upright and choosing to follow and obey and for what? To get thrown into the arena and fed to the lions to prove a point? I wrestle with this part of the story, and to be honest, I’ve never got a clear idea of why this has to happen.

But as hard as the implications of all of this are to take in, it is in this moment when the reader thinks, “Ahhh, maybe now we will finally get an answer to the age-old, question we’ve been asking since the dawn of time…WHY DO BAD THINGS HAPPEN TO GOOD PEOPLE?

*Spoiler alert* We never get the answer to the question.

So now Job is suffering—he’s lost everything he’s ever had. In one fell swoop, (maybe the truest usage of that term, ever) he loses all his cattle, sheep, camels, wealth, and children, when the house they’re all partying in collapses, killing them all. Basically every worst, possible grief, sorrow and nightmare happening in a day. Later, he additionally loses his health and gets boils and open sores all over his body. He also loses relationship, especially in his marriage, because his wife tells him to just curse God and die and get it over with. He goes into mourning, and that’s when we get the special delight of meeting Job’s friends, Eliphaz, Bildad and Zophar (try those baby name suggestions at your next baby shower game).

These men operate from their understanding that God is just, and rules the world accordingly, so if you’re a good person, good things will happen to you. If you’re evil, bad things will happen to you. It’s simple math. So you can see by this logic how they became 100% convinced Job must have done something terrible to warrant this spiritual attack. Job insists he’s innocent, they insist he’s not, and on and on it goes for chapters. Their condescending, critical, and brutal verbal tirades are at least eloquent and poetic, I’ll give them that. Job gives one last impassioned plea of innocence and also demands that God show up already and explain himself.

Then this new guy Elihu enters the scene. He agrees with the other friends that God is just and God uses judgment to rule the world, but instead of drawing the conclusion that Job must have sinned, he draws the conclusion that maybe suffering could be given as a warning to avoid sinning in the future. Or maybe the purpose is to build character. This is all presented really well and concisely but warrants no response from Job. I think he’s pretty much done at this point with the pontifications of others who are quite literally, not walking in his shoes.

Then the Almighty God enters the chat.

He asks, rather sarcastically, where were they when He laid the foundations of the world? Do they know about the organization of constellations and galaxies, the boundaries of the oceans? Do they know how to command the rising and setting of the sun or control of weather? What about the grazing habits of mountain goats and the birth process for deer? God paints a panoramic picture of how narrow our human gaze is when we view our little lives in our tiny little bubbles and view the world through that microscopic lens. We just simply have not even a fraction of the size of lens we would need to have to be able to view things from God’s point of view.

God’s world has beauty and order, it’s amazing and good—but it is also not safe or perfect. It is wild and dangerous. So now we circle back to the ultimate question—why is there suffering in the world? Whether it’s an earthquake or a terminal cancer diagnosis or genetic mutation, why does a good God allow all this? The closest thing we get to an answer is that we live in an amazing, complex world that at this stage, is not designed to prevent suffering. That’s it. That’s God’s response. We are not in a position to question God’s justice, because our view is so small, and He invites us to trust His wisdom in the things we can’t understand.

Job responds in humility. He apologizes for doubting God and overstepping his bounds. And this brings the story to its close. But before the final page is turned, God approves of a few things Job got right: 1. His Struggle 2. His honesty 3. His prayers. He likes that Job came to him in his wrestling, with full, raw-throated transparency and sorrow. Job lamented, he wailed, he thrashed about and tore his clothes and covered his head with ashes. There was no sugar-coating it, no finding the silver lining, no positive spin moves. Just real, ragged, gut-wrenching sorrow. But not sorrow for sorrow’s sake, but Job processed his grief through prayer.

In the end, Job has all of this wealth, health, and family restored. Not as a reward, but as a generous gift from God. I’ll be honest, I wish we would get more of an answer. I wish God would just explain it all, top to bottom, beginning to end. No uncertain terms. Just the question we’ve longed for since the dawn of time. The answer to the “WHY” that so many of us have cried out from the depths of our souls. But what we do get, is an invitation to trust God’s wisdom when we DO suffer, rather than search for reasons. The search for a “reason” is likely just going to lead us to simplify God like Job’s friends, or accuse God, like Job did.

So we are left with this—bring your grief and your pain to God in prayer. All of it, no matter how raw and ugly. Then, even though every fiber of your being cries out against it, choose to trust that God actually cares, and He knows what He’s doing.

That may not seem like much, and believe me, it’s not the 12-steps-to-victory blueprint that I wish it was, or a patented formula to fix-all-that-ails-you that I desperately wish it could be. But I’m learning, slowly and painfully, that we don’t get the answer to our “whys” nearly as often as we’d like. Sometimes never. Suffering isn’t accompanied with quick-fix solutions or magic wands to erase all the pain. Of course we know this is true, but it doesn’t seem to stop our brains from wishing for it, desperately. We want to believe that if there were only some sort of cosmic reason for our suffering, it will hurt less.

But Job teaches us that sometimes, the only tool we have available to us is one small, barely visible step of faithfulness. Choosing to cry out to God instead of cry into the darkness. Choosing to believe He is faithful instead of choosing hopelessness. Choosing to surrender the questions that have no answers, the ‘whys’ that remained unknown.

It might not seem like a big thing we can do, but maybe it’s the only thing we can do.

It was a Saturday morning, and I had just gotten back from my workout at the gym. I was sweaty and disheveled and in sore need of a long, hot shower. I hadn’t slept well (correction—I slept terribly) the night before, and had woken early that morning with the weight of the world on my shoulders. It carried right on over into my time at the gym, and try as I might, sometimes I just can’t shake it. It follows me like the dirt cloud around that one kid’s head in Charlie Brown, shading my path and dusting the circumference all around me.

One of the tricky things about grief is the common assumption by those around you that whatever you’re dealing with is wholly and completely about your loss. Sometimes it’s not.

Sometimes it’s about the new person that you find yourself becoming. Sometimes it’s about how you feel you can’t stretch around to anyone or anything anymore. Sometimes it’s about how church feels like a foreign place after feeling like a safe haven for so many years. Sometimes it’s about being afraid you won’t ever find a way back to enjoying the things you used to. Sometimes it’s the deeply penetrating, all-consuming fear that you will be lost along the way.

It’s like that scene in the movie Inception…which is really hard to explain so I had to enlist chat gpt to help me sum it up. In the movie, someone can go so deeply into a dream state they can reach a place called “Limbo”—an unstructured, unstable place that doesn’t follow any of the normal rules of reality. It’s formed from your subconscious, which means that things like memory, regret, and imagination rule supreme over things like time, gravity or logic. Because time passes so slowly (hardly at all, really) people can get trapped there forever, forgetting that they’re dreaming, losing touch with reality, unable to find their way back.

Grief can feel a lot like that.

So anyway, there I was on a Saturday morning, needing a shower, when Charlotte brought me a freshly made omelette. I stopped. I stared. There it was…all light and fluffy and cloud-like and perfect. Just the way I never quite learned to make them and just the way my Dad always did.

And while it’s true that I’ll never get to have another one of my Dad’s omelettes…here before me was one made by my daughter, and it looked just the same.

I think it was then that I realized—maybe instead of thinking of the things I’ve lost or things that have been taken away, the people or dreams that have died, the chapters closed to us forever, I need to start looking for the shadows of those things.

For example, I’ll never hear my dad’s laugh again—but occasionally I will hear a similar one. The authentic kind when the person throws their head back with gusto and abandon. It’s contagious, the kind of laugh that makes you want to join in, or at least smile a little on a day when you otherwise wouldn’t. And it’s not Dad’s laugh, but it still helps to hear, somehow.

My son Archer notices the sky, just like Dad did. Sunlight shining down in tractor beams and sunsets with a kaleidoscope of colors and clouds in shapes like animals. He will point it out and even shout excitedly, “Mom you gotta come see this!” and it thrills my heart that he has that child-like wonder of the heavens like Dad did.

All of my children think it is physically impossible to watch a movie without a giant bowl of popcorn, which is both like my Dad (who always made it) and my Mom (who also did not find it physically possible for people to watch anythinhg without snacks). And for my Mom “snacks” never stopped at mere popcorn, but usually extended to include smoothies or milkshakes, sliced apples, homemade chex mix, sliced up deer sausage and cheese, and maybe chips and salsa as well. For normal people, it was a 4 course meal. For us, it was “a movie snack”.

My Grandpa Lynn loves word puzzles and will often text me his results on the daily Wordle or Connections. I scrolled through my old text thread with Dad and it too, was dotted with Wordle results. Dad loved words and tried to learn one new word each day. Grandpa was so excited when he figured out that you can look up all the past Wordles, and they never re-use a word, so you can make a spreadsheet of all the ones it can’t be anymore to help your guessing. Dad would have been delighted with that.

My boys get really excited about their step-counts of the day, just like my Dad did. While he was in the hospital he got so discouraged by how few steps he would register and so he started trying to walk the halls. I’ll never forget the look of those bunched up sweats into the end of his cowboy boots—like he just needed to get a little bit better and he’d get right back in the saddle.

My brother Shane introduced me to “The wreck of the Edmund Fitzgerald” which he could hardly believe I had never heard of and the whole entire thing—story, song, tune, lyrics, vibe…is just all so DAD I can hardly explain it. If you know, you know.

I see shadows of Mom, too, but they’re harder to find because she was truly just one of a kind. I see her in a lot of the weird things that I do—things like washing out ziploc bags to reuse, or saving a sour cream container to hold leftovers. It comes naturally to be on the lookout for ways to re-use things people would throw away. I see shadows of her while braiding my daughters’ wild hair into submission or playing card games to win, even against my children. There are no handouts in this life, and the best place to teach that concept for my mother was a card game. I think of her whenever I go to a pool with my kids and put my book away and get in the water with them because there are only two kinds of pool parents, and my mom was always the swimming kind.

I also think of Mom whenever I write, not because she wrote but because she always wanted me to write more, and now I finally am. I quit blogging 8 years ago and I’m not even sure of all the reasons why, but I’m trying to start again. They both wanted to see me write a book one day and it pains me to think that now even if it happens, they won’t be here to see it. But it’s ok—because while I may never have Dad’s omelettes again, I can have Charlotte’s, and they’re delicious.

So while it is true that Dad and Mom are gone, (and some days that feels too heavy for me to hold ) perhaps I can try and detect the little shadows of them that remain. Maybe it will take the sting out of all the gaps and holes that are missing. Maybe it will be like driving those Iowan dirt roads and trying not to lose a tire in some terrible pothole…focusing on the holes just seemed to cause you to hit them all the more. But if you aimed for the tracks of the tires who went before you, you could make it through a little more unscathed.

I sure wish I could have Dad and Mom in three dimensions again, but I’ll choose to look for the shadows for now.

It makes the process even more difficult when you live out-of-state. You don’t have the liberty of slowly and wistfully sifting through your loved one’s items with nostalgia and proper lament. Since I live 2,000 miles away from my parents’ previous earthly residence, after their funerals it was like a hurricane/tsunami/tornado/avalanche of grief, sorrow and horror, and trying to throw a yard sale at the same time. Or a benefit auction. Or a great big, giant spring cleaning. All things that feel just fantastic when you’re grieving. Not.

So in the immediate days following my parents’ deaths, we had to go through their things. Clothes, books, shoes, odd and ends. It’s so weird to me, the things that we leave behind. They are supposed to sum up our existence somehow and of course they do not. It also feels like we are slowly erasing them, as we part with their things. I know this isn’t logically true, but it feels it just the same.

We recently had to list the ‘old home place’ for sale, which feels about how you might guess it would feel. My parents still lived in a trailer house when I was born, but when I was maybe 3 or around that age, we moved to the old house on Angle road, just past Joetown, Iowa. It was down a gravel road, surrounded by cows and cornfields and an old rickety bridge over a muddy creek and my grandparents lived just up the hill.

It was nothing fancy—two stories and a full basement, but still not enough square footage to comfortably raise a family of seven kids, but we always managed to squeeze in and find a place to stay. There was a sprawling complex of shops on the property, housing my Dad’s family business, Graber Heating & Air, and where we loved to play hide-n-seek and any manner of nonsense we could cook up with our cousins.

There were quirky little things about our house that I’m not sure anyone’s else had, but they were just part of what made it home. There were the wall-mounted phones—not just phones on the wall, but built-in nooks that housed the phone and several phone books, and probably a calendar and a couple pens velcro-stuck to the wall as well. There was a laundry chute that extended from the top floor bathroom to the basement, so that clothing could make it all the way down. Sometimes it would get all jammed up, and you wouldn’t be able to find your favorite t-shirt for a few days until you went sleuthing around and discovered the impass. A yardstick was the perfect implement to jam up at the pile, dislodge it, and yank you arm back in before the cascading heap of clothing took your yardstick (and arm) with it.

Speaking of yardsticks, there was a tall, narrow cabinet in our dining room that was only a few inches wide that stored our yardsticks and rolls of wrapping paper. I cannot imagine what it was actually intended for, but it held those just fine.

There were saloon-style french swinging doors at the top of the stairs that were supposedly for helping keep the A/C upstairs in the heat of summer (because cold air falls, and would just slink on down the staircase, in my Dad’s opinion) but I think it might have been more for the loudest, creakiest hinges known to man that would sound the alarm whenever they were opened and closed, especially after curfew.

There were mirrored doors on our coat closet, and a mirror in the bathroom that showed you and your infinite twins, stretching on in duplicity as far as the human eye could see.

There was a beeper that notified you of when someone was entering or leaving the driveway, and many a time that beeper gave me a leap of excitement (based on who was driving over) or dread (I’m running late! and they’re here!!) depending on the circumstance. (This is actually super handy and now I am thinking I definitely need one at our place.)

There was a big beautiful oak tree that we loved to climb, our handprints and signatures cemented in concrete, an old tire swing, and somewhere (like the Miranda Lambert song) my favorite dog is buried in the yard.

It is a place of countless memories and stories, happy moments and sad, milestones and growing pains. Loud, boisterous family dinners and movies nights with popcorn and cinnamon rolls at Christmas time. I still have scars from wiping out on that gravel road, flying down the hill from Grandma’s house on my bicycle. My siblings and I had precarious footraces across the handrails of that old bridge, and built snow forts every winter. We shot potato guns, caught fireflies, and explored nearly every square inch of those woods. And I could list 10,000 more.

There is no place on earth quite like the place where you grew up. And this one was mine. With all of its flaws and imperfections, it reminds me a lot of us…maybe that’s why it feels so familiar. It’s quirky and old and full of character, and it raised us all and sent us on our separate ways, and it will always hold a little piece of my heart.

I guess Dorothy was right after all—there’s no place like home.

I’ve had quite a few childhood friendships that came and went, a fact I lament now and wish I could go back and change. Why did I let those friends slip away? Why didn’t I keep in touch? Why didn’t I make more of an effort? Sometimes I feel incapable of hanging on to friends. I have always been ‘flighty’ and I just sort of drift through life, meeting new people here and there, changing out friendships along with different seasons and situations in my life as time goes on. I don’t view it as disloyalty, it’s more of a lack of focus. One of my sons is this same way, I’ve noticed and I have to actually remind him to think about his friends and reach out to them or prompt him to connect.

But in spite of my inadequacies when it comes to fostering long and lasting friendships, a few have remained over the decades, and these seem to just increase in value over time, like a long-term investment that you couldn’t replace with a new, shiny thing even if you tried.

When I found out when they were planning to come, I inwardly cringed at the thought of them being subjected to Oregon at its arguable worst—JANUARY. The fog, the rain, the cold, the insufferably endless gray. I felt a sharp pity for them, spending their hard-earned money on tickets to fly into weather more befitting a Dickensian novel of than any ‘vacation’ one would aspire to, but they assured me they were coming to see me, not the sunshine, and all would be well.

But while I was fretting that it might spoil our fun, and dampen our spirits (literally and figuratively) my friend Jewel, ever the optimist, could not stop exclaiming over the beauty of the Oregon landscape, even in its moody, damp, foggy wintry state.

“LOOK at the mountains!” she’d exclaim. “And the sheep! Grazing in the field! Oh it’s just beautiful. Look, more mountains!” I would peer skeptically out the window alongside her, wondering if we were looking at the same thing. “Yesss, there they are.” I would offer slowly, scrambling to grasp what she saw that I didn’t. Were they bolder today? More rocky and rugged and somehow different than the days before that I hadn’t noticed? Nope, they were the same old mountains.

But her objective appreciation for the landscape reminded my eye to take it in differently. Now instead of just looking out the window and seeing the gray and the drear and the lack-of-sun, I was noticing how the colors of the foothills took on different shades and tones, and the sheep were a picture of gentility and peace, and the fog seemed to shroud the land in mystery and intrigue.

And it happened again with breakfast, when I just haphazardly threw things together and they found it delicious and satisfying. And again with my children, whose busy-ness and noises can be so intrusive and tiresome to some, but they welcomed and encouraged and participated with.

They made me feel like the ‘chaos and mess’ of my life was still beautiful, somehow. This concept was maybe best demonstrated in the "pantry project” we tackled at their insistence, in which they helped me clean out what seemed like an impossibly disastrous space and I’d been eternally avoiding, and transformed it into something beautiful and useful again.

Isn’t this what we all need the most in friendship? We need someone to see us, know and understand us, and reassure us that the mess of our lives is not too messy for them, and it’s not too far gone for redemption. We need a new set of eyes to see the beauty of the mountains when all we can see is the rain. We need a new set of ears to hear the clever wit of our children when all we hear is the noise. We need a new set of hands to create order and organization when all we can see is a heaping pile of garbage.

This, I think, is what friends are for. They don’t leave us to wallow in our pit—sometimes they help us find our way out, sometimes they just drag us out, and sometimes they come down there alongside us and help us find some small slivers of beauty in it while we’re still stuck fast.

If you don’t have these kinds of friends, then I implore you to find some. I’m sure there are people around you feeling the exact same way, and needing the exact same thing, so just initiate. Reach out and try. Make some, borrow some, whatever means necessary, GET some in your life. We were never meant to walk this road alone, but we often try, and it sure doesn’t get us very far. And even when we manage to do it, it’s not nearly as much fun.

I think in our modern day of technology, we are drifting from true friendship. Social media has created a false sense of closeness and community, misleading us to believe that we are still having meaningful connections when in reality we are feeling more lonely than ever.

We’re desperately seeking those little micro-doses of dopamine from likes and comments, sharing our little snapshots of success and happiness, even when less and less people are actually let past Oz’ curtain into our actual lives. We view other’s highlight reels, noticing every area in our own life that is lacking, and we sink further down into our self-made pit. And no one can speak into it because no one realizes what’s happening.

I think we need a slow return to flesh-and-blood relationship. Physical over virtual. I struggle with this because online connection is much quicker, easier, and requires a lot less of us to initiate. Even writing this post is a lot easier than reaching out in conversation to one friend, because there is always a thin layer of anonymity in broader-spectrum communication than one-on-one.

But we have to fight for it. When the world is pushing us to go more and more automated and AI-generated, we need to have someone over for a cup of coffee. Carve out the time and be willing to be vulnerable enough for someone to step into our mess, our home, our heart and look around. It can be oh-so-humbling, but it is oh-so worth it.

Let people in.

Let them love on your kids, eat at your table, organize your pantry, sweep up some dirt, and remind you to look outside the window and admire the mountains.

This woman, whom I don’t know personally and cannot vouch for any of her credentials, was talking about how that is Macro Grief. And when we encounter that kind of grief, it sort of rearranges our world and all of the old ways we used to find a lot of joy and fulfillment don’t work anymore.

That resonated with me, hard. Because I used to find a lot of joy in looking forward to the future. Dreaming of things my kids would do, and all we would do together. Thinking about all the ways I would watch them grow and develop and all the things they would accomplish one day. And with Jocelyn’s diagnosis, nearly all of that changed. It felt like a seismic shift in the plates of terrain that made up the fabric of my whole world. Nothing would ever be the same.

No more could I turn to some of these sources for joy—dreaming of volleyball games or family hikes or college applications. I just felt like everything had been stripped away in a moment, but I was somehow expected to still be able to scrabble up some joy. And I couldn’t.

But the concept of ‘micro joy’, is that the tiny, seemingly insignificant things that you used to hardly recognize as anything, suddenly become the only things that actually get you through.

The hot cup of coffee first thing in the morning.

Wearing a hoodie still warm from the dryer.

Reading a book that you can’t put down.

Putting a puzzle together in front of the fireplace.

A long, lingering kiss.

Thrifted treasures.

A spine-tingling tv show with a favorite snack.

Working hard in the gym and knowing you can do hard things.

Rays of sunshine breaking through the foggy gloom.

Laughing until your ribs hurt.

These are things that happened in the Before too, of course, but I just didn’t notice them as much. Now, living life in the After, they stand out in stark contrast to the general hopelessness that pervades a lot of life now. They offer little beacons of light, like a buoy in an ocean of chaos, reassuring me that even if so many things have disappeared off the horizon of our lives, some things remain. We can still enjoy a good latte. We can still read a good book. No one has taken that away from us. And while it’s true that there are many, many, many things that will never come to pass, there are also many things that will, and so I had better start noticing each and every one of them. Because really, that’s all that we have.

To be honest, I have no idea if this will actually work yet. I don’t know if this will combat the sheer despair and hopelessness I feel, a majority of the time. I don’t know if it will help me feel more compassionate towards others, when I’m often just terribly annoyed at what people think of as “problems” when they’re not real problems at all. I don’t know if this will help me find joy more in my everyday, or if it will even help me learn to enjoy living. But it can’t be much worse than the alternative, which is living joyless and just going through the motions, with which I am far too familiar.

So I think I am going to try this as an experiment of sorts. Not thinking that it will magically fix anything, but because it will remind me that there are still good things that remain. There are still blessings that haven’t been taken away.

And I suppose it would also do me good to remember that there are things that actively diminish micro joys, and if they’re micro to begin with, it doesn’t take much to snuff them out. Social media, and scrolling endlessly through an infinite carousel of everyone’s MACRO JOYS, most of which are now unattainable to you, is a micro-joy killer. Because let’s be honest, you aren’t seeing the hard stuff in between it all. You’re generally seeing the vacations and the proposals and the pregnancy announcements and the graduations and the parties and the celebrations and the record-breaking sports season and the huge accomplishments and well, the Everything Good. And then you’re comparing that to your Micro Joys or worse, your Macro Grief and, well…you can guess how the rest of that story goes.

So this is a verbal reminder to myself, I guess, and making it public helps to keep me accountable to actually do it—to be looking for micro joys. Because gratitude begins with noticing.

And even on the days when we are quite sure there isn’t, there is always something to be grateful for.

If you haven’t experienced one yourself and now you feel like you’re missing out, I”ll fill you in. All season long, you get to overhear people saying things like “I just don’t know what to get my parents for Christmas, they’re so hard to shop for!” Or “It’s so hard to decide which side to spend the holidays with—it’s just so much to juggle!” Or my personal favorite, “I’m not really on speaking terms with my _____(fill in said parent) and I don’t even really remember why, but we won’t be getting together because of some long-standing grievance.” This is usually my cue to arrest my face from making subtitles with its expressions and make a hasty exit before I say something that I will likely regret later.

It’s not their fault they can’t see how idiotic they’re being. It’s not their fault that they can’t see past their own nose, much like I used to. It’s not their fault that their parents are alive and mine are dead. At least this is what I keep repeating to myself when I want to take some garland and ribbon and strangle someone. Somehow I doubt that is what they are referring to in ‘Deck the halls’ so I refrain.

Or there’s always that one person who says “Let’s not do a gift exchange this year because our kids already get SO MANY presents from ALL their grandparents.” Gee Samantha, sounds like a real TRIAL. I’m so sorry for your hard row to hoe. I just can’t imagine what I would do with such a Grandparent Surplus Problem on my hands. It really must just be quite a pickle.

Then of course there’s the ever-present Battle of the Alamo, otherwise known as the song and dance of which-family-gets-what-day. But now the playing field has just been wildly upset. You’ve lost your dog in the fight because, well, your parents are dead. So now of course you are eternally, infinitely, flexible, and everyone knows it. So this new development delightfully frees up everyone else to schedule and scheme and plan, and you, poor unfortunate soul, just have to shift to accomodate them because you’re an orphan now.

“So does that work for you?” Better get used to that phrase, if you’re joining this club you never wanted to be a part of, because when it comes to holiday plans it will come up time and time again. This is usually asked after the person asking it has already made all of their own plans, and is now tacking you on like an unwanted Christmas necktie. “OF COURSE IT DOES, KAREN, MY PARENTS ARE DEAD.” I want to scream in reply. But according to Emily Post, that isn’t proper etiquette in most settings so I just say, “Yeah that will work for us.”

But never fear, this isn’t all of the rapture and delight that awaits you during the First Christmas Without Parents. There are the random, unbidden holiday commercials featuring family and memories and reeking with wistful nostalgia that hijack your emotions and freeze you in place, encased in ice, on your sofa. There are the recipes of Christmas goodies and snacks that you didn’t even know you didn’t have until you start to try to make them, because your mother was always the one who made them and now she’s gone and so is the best party mix in the world. There is the unrelenting, unwavering guilt and regret of not traveling home more often for the holidays.

And then there are the songs. Oh the songs, songs, songs, songs. With lyrics that pirouette on the line of emotional damage as they croon about families and gathering, magic and mistletoe, and being home for Christmas if only in your dreams. And as an extra bonus for club-members only, you might also get to experience an actual dream in which you visit home and see your parents, healthy and happy and living in the past, Ebeneezer Scrooge style. The adventure continues!

On top of all of that of course, will be the fear and shame that you aren’t “making the most of the season” with your own kids, and we all know we only get 18 with them. Another one down, clock’s ticking! Come on, be merry! Joy to the world! Make every moment magical! So you try to pick yourself up by your bootstraps and wade through your grief, while simultaneously creating meaningful traditions and Christmas spirit and trying hard not to lose your ever-loving mind in the process.

I am, however, grateful for glimmers of joy in spite of the shadow cast over this season. I love how resilient children are, and sometimes it is a small miracle how they can think of a Christmas as “the best one ever” when in your reality it fell short. They find a way to see magic in the moments that felt a failure to you. This is one of the small graces of parenthood—that sometimes your efforts stretch farther in their rosy outlook on life than they do in the margin of your own.

There was the unbridled joy on my children’s faces when opening their gifts and the creamy and delicious clam chowder my husband and son made together. There were Legos from Grandma Bonnie and the dinner we shared with my sister’s family on my mother’s wedding china. There were dinners and chocolates and gifts and games and good times. It was a good Christmas—in the way that things can be happy and sad, hard and easy, heavy and light, good and bad. And whether or not you would wish to repeat it is irrelevant, because like all Christmases, or days or years…you only get to go through it once.

So it’s up to you to make the most of it.

His mother, (my sister-in-law Fern) had contracted covid and was struggling. So shortly after the emergency c-section that brought little Caspian into the world, they intubated her and she spent the next 2.5 weeks in the hospital fighting for her life. It was a dark Christmas for my brother Shane as he juggled life with a toddler and a newborn, wondering whether or not he would get to see his wife again. I wished I could fix it all for him but of course I couldn’t, so I cleaned their house and stayed up in the night rocking Caspian, and fed him bottles and stroked his perfect face and tried to take photos so Fern would be able to witness those priceless newborn days.

We were living in Iowa at the time, which meant I got to spend Christmas with my side of the family for the first time in years. Like, a LOT of years. We had made the cross-country move from Oregon to Iowa with our 5 kids and a dog, for just one short year. A decision I’m sure most people thought completely crazy, and with good reason. We didn’t even rent—we actually bought a house and sold it the next year when we moved. Like I said, C-R-A-Z-Y. But we had just enough blind optimism and ambition to think it would all work out, and it actually did. Of course it would have never been possible without our in-laws agreeing to live in our house for the year that we were gone, and also the flexibility of Randy’s business. He worked some remotely, made lots of work trips back to Oregon, and also worked part-time in Iowa for my Dad’s business, Graber Heating & Air. All of these things and more, coincided to make this kind of a crazy move possible, and I don’t take that all for granted.

We had always wanted to spend some extended time in Iowa to be closer to my family, and when Mom was diagnosed with colon cancer in February of 2021, we decided we’d better not wait. We moved in the summer of 2021 and stayed until the summer of 2022, and even though it was short, I’m so glad we did. We were trying to cherish all of the moments we had with mom, never imagining we were in our last 2 years with Dad.

We rented an air BnB large enough for all of us to gather. My older sister Shannon wasn’t there with her family of 9, but the rest of us were there. My family of 7, my 4 brothers with their wives and children, my sister Sheryl and of course, my parents. We ate lots of good food and played lots of fun games and opened gifts. In many ways it seemed the idyllic Christmas, and it many ways it was. But of course there were things I worried and stressed about even then, which knowing what I know now, makes that seem a little crazy too.

My Mom had the inspired idea to gift my girls two little hamsters, an idea that at the time seemed truly terrible. We were only temporarily living in Iowa and already had to walk our dog way too many times a day because we lived in town with no fence around the yard and she had to be in her kennel or tied up at all times. Not to mention the other tasks of oh I don’t know, RAISING 5 HUMANS. Jocelyn was struggling in school and I was trying to meet with special education teachers to find her the help and support she needed. It was hard to find the time because the principal from the private school she was attending would not allow outside resources to get involved, and so we had to meet with them before/after school hours. It already felt like we were stretched to our max and struggling to stay afloat. So as I’m sure you can imagine, throwing two rodents in to the mix seemed like the last thing anybody wanted. But Mom was so excited about it, I relented.

Now looking back at the videos and seeing the shock and delight on their faces and the sheer joy on Mom’s, I wish I would have just been on board from the beginning. They were only hamsters, how bad could it be? It’s not like they would live forever (spoiler alert, they didn’t). So what was I so worried about? Why couldn’t I have just embraced her wild idea and gone along with it sooner? I guess you can just add that to the list of things I would go back and do differently. A list which by now could be described with those famous lines from an old hymn…. “Nor could the scroll, contain the whole, though stretched from sky to sky”.

It was such a special Christmas but of course we didn’t know just how special it was. It was the last Christmas I was with my family on Christmas day, with both of my seemingly strong and healthy. We were all together again for Christmas of 2023, but were very much in the final stretch of time with Dad.

It makes me think a lot about the incredible sacrifice of God taking human form, and coming to earth as a helpless infant for us. What a cruel shock it must have been, leaving his Heavenly throne and entering our broken and bleeding world, where everything dies. How humbling it must have been to Him, to stoop so low to have to be birthed and laid in a dirty feeding trough and parented by two flawed humans. And to think, all the while, what laid ahead for Him. The hardest thing I have ever had to endure in my entire life, has been watching my child struggle. To see the things she is physically incapable of doing, and might never be able to. To see the things that might continue to be stripped away. So I cannot imagine the cost of that holy, unthinkable exchange. The God of the universe stepping into a body of human flesh. To walk the ground with us in our earthly limitations.

It is easy to focus on the things I do not have this Christmas, and the things I wish with all my soul could be different. Most days, that is all I can see.

But I am trying. Trying so hard to remember the true gift of Christmas, and the hope that it brings.

“Tears are falling, hearts are breaking
How we need to hear from God
You’ve been promised, we’ve been waiting
Welcome Holy Child.

Bring your peace into our violence
Bid our hungry souls be filled
World now breaking Heaven’s silence
Welcome to our world.

Fragile finger sent to heal us
Tender brow prepared for thorn
Tiny heart whose blood will save us
Unto us is born.

So wrap our injured flesh around You
Breathe our air and walk our sod
Rob our sin and make us holy
Perfect Son of God
Welcome to our world.”

—M.W.Smith

And I know it’s become a bit of a cliche that there is no right answer to the question of “How are you” to those who are dealing with terrible things. Some people want to defend the question, whether or not a good answer is to be had. “It’s fine to not give the whole truthful answer, no one is actually looking for that. It’s just a formality, a greeting. It’s just something people say”.

But you see, to some of us, answering that “formality” with anything other than something at least resembling the truth feels like a lie. It feels like a deception. And worse yet, it feels like it’s betraying what we are feeling. It feels like we’re refusing to acknowledge our own private pain, driving the knife of it a little deeper into our side. Our grief has already made us feel invisible to the world, and if we answer that question just to make you feel comfortable, we have become invisible even to ourselves.

So why not just be honest? Let it all out? Give the whole truth and nothing but the truth? Well, I’ll tell you why—because much like Tom Cruise in a Few Good Men, you couldn’t handle the truth.

No one wants to hear about rage-crying in the shower, pounding the tile with open hands, letting the steam and the sound of the water cover over your lament so that it doesn’t bother your kids. No one wants to know about the gut-wrenching sobs while alone in the car, hitting the steering wheel and begging God WhyWhyWhyWhyWhyWhy.

There is no tidy coffee-club-conversation that can handle the sheer weight of my questions. There is no moms support group that is equipped to deal with the darkness. There is no Hallmark card answer for when it feels like everything I’m carrying is going to crush me into dust.

Besides all of that, there is usually too much to disentangle for any appropriate answer, even for myself. Am I sad that my parents are dead? Am I confused how any of this recent diagnosis can be part of God’s plan? Am I bitter that some people seem to skate through life grief-free? That some seem to hold some sort of magical Monopoly get-out-of-pain-free card? Am I exhausted from trying to keep it together? Am I deeply regretting all of the times I never went home for the holidays? Am I angry at God?

Check, check, and check. But none of those answers will quite do, either. So we avoid the question, turn it back to you, or use some other slight-of-hand to avoid a conversational calamity, as it would surely turn into if we let it.

There’s a tradition in Jewish culture, I believe, (but I’m too lazy to look it up so I’m probably getting it half wrong) that builds in a default way to recognize grief and loss. The grieving people enter into the temple from the opposite direction. That way when the crowds pass by them, they can reach out their hands to touch them and acknowledge their pain with a few simple words. No elaborate gestures, no “How are you doings” just a simple acknowledgement of their sorrow.

I think we would do well to learn from this somehow. To weave it into the fabric of our culture in a way that makes it less isolating for the grieving, and less awkward and uncomfortable for the ones trying to show that they care.

I have a friend who, I’ve often said, can speak the Language of Grief. She doesn’t often ask me how I’m doing, but will ask specifics like, “How did you sleep last night?” or “Do you want company?” or “Can I bring you a meal?” All of which have an easier, simpler answer by a green mile than “How are you?” Sometimes it just takes a little creativity. Ask, “What is something bringing you joy lately?” or “How can I pray for you?” I takes maybe .4 seconds more and a tiny bit of intention, but I promise it will be easier for the person to find an answer. Also, you may be wondering why I write about this at all. After all, it’s a bit of a downer.

I write to process. I write to get some of it out from under my skin so it won’t suffocate me. I write to hopefully, perhaps, maybe, someday, find some little glimmer of hope in the mess. I write to try and put it somewhere else other than the tip of my tongue so it doesn’t spill out on the first unsuspecting barista unlucky enough to ask.

But maybe I will just copy and paste from a meme my sis-in-law sent me, and use it as my default answer from here on out to the dreaded, “How are you”?

“The horrors persist, but so do I.”

“I hate to be late. This is not a word I allow to be used in our home. 8:05- start raising family. 8:30-Breakfast. In car at 9:17. Slow traffic. Buggies. Get to church at 9:28. Walk in, straight to usher. Wait two minutes on family. Sit down 3 seconds before Floyd Yutzy calls for 20 seconds of silence to start the service. I need 20 MINUTES. I can feel my blood pressure through the roof. This is May 26, 2012. Next Sunday we will start different. 7:30 up. In car at 9:05.”

Oh poor, sweet Dad. I wish I could know if the next Sunday was different but I highly doubt that it did. We were one of those big, chaotic, perpetually late families, you know the ones. Always scrambling, rushing, sliding into church at the very last minute (or to be honest, quite a few minutes after the last minute) and sidling into our seats in the wing while everyone turned their heads 90 degrees to the left in syncronization to stare at us the whole way through. I can still close my eyes and see them, heads turned on a swivel, gawking at the Barry Graber family that was all trailing in Late Again. It is some of my most formative memories.

Unfortunately this was not only a Sunday occurrence. I can remember my teenage self, lying in bed early Saturday morning, relieved to have made it through another grueling school week and ready for a slower, quieter, cozier pace.

“Kiiiiiiiids!!” Would come my Mom’s screeching voice up the stairs, shattering the silence. “We’re LATE!! We were supposed to be at the chiropractor 15 minutes ago!”

And so would begin the day—in full-blown panic, high cortisol and an overwhelming sense of fight-or-flight. The fact that we never even knew the appointments existed was irrelevant. Even if they had been made known to us and jotted down on the calendar and reminded by text, I’m sure we would have found a way to forget them. This was the Graber way. You forgot, you panicked, you scrambled, you arrived late.

On school mornings I barely remember using an alarm clock. Usually, I would wake up some unseen force (habit? instinct? panic?) and realize that I had about 20 minutes until school started, and the drive took a solid 12. I would pull on a hoodie, run a brush through my hair and grab a granola bar on my way out the door like the Tazmanian devil in a cloud of dust, peeling out the driveway and breaking land speed records the whole way, praying as I crested each hill that I wouldn’t meet an Amish buggy going about 8 mph.

As I’m sure you can guess, none of this felt peaceful or practical or sustainable. It felt a lot more like slipping slowly into madness (read that in the Grinch voice please). I think sometimes the people who Are Never Late, assume that the people who are, just don’t care. They can’t be bothered by the constructs of time. They think they’re above it, and the rules don’t apply to them. That they laugh in the face of time. Or worst of all, they enjoy this all somehow.

That is not always the case. I hated it—hated that it was our trademark, our identity, our legacy. Hated that it was synonymous with our last name but it also felt powerless to change. Hated that it affected everything from events and plans to relationships. Hated that it was the punchline to a lot of jokes. Hated that it made me an easy target for scorn. Hated that it didn’t matter if I was on time 16 times in a row. That 17th time I would be late, and it was still “Shelley’s always late”. It seemed no matter how early we began the preparations, there would be something (an outfit change, a car that needed gas, a forgotten item to run back in for, etc.) to derail our progress.

The biggest deterrence to us ever being on time, was the habit of extremely overestimating what we had time to accomplish. Mom reigned Queen Supreme in this. She was always thinking she had time for one more load of laundry, emptying the dishwasher, tidying up a few rooms and maybe throwing something in the crockpot for dinner before we left to go somewhere. I now know just how misleading this thinking is, now that I am the mom, and I too think that I have time for all of these things before I leave to go somewhere. It’s this heady combination of wanting all the appliances working for you while you’re gone, and desperately wanting to avoid returning home to all of your work still waiting there for you. For some people, 15 minutes is only enough time to get in the car. For some like my mother (and myself) it feels like plenty enough time to do all of the aforementioned things, and maybe also take a shower.

We are not all the same.

Maybe even worse than my mother’s predisposition toward being late, was her attempt at “solving” it. She set all the clocks in our house 15 minutes early. Surely this would fix the problem. We would look at the clock and think, 7:45, we’re late! And rush out the door only to realize it was really only 7:30 when we left. Whew, problem solved! Except in reality it did the opposite, because we got in the habit of looking at the time and thinking “But that’s not really the time, we’ve got at least 15 minutes more” and so we learned to take the clock even less seriously than before. So sometimes we were even later than we probably would have been normally. Funny story (except not that funny) is that after Mom died, my sister and I were running a little late to the meeting at the funeral home. We scrambled around, jumped in Mom’s car, and headed out, frustrated that we had let time get away from us like that. As we headed into town, we realized that somehow, we had gained 10 minutes. And that’s when we realized it was because Mom’s clocks were all set ahead. We just laughed. How perfectly fitting.

I shudder to think that at my funeral, someone is going to make some kind of joke about me being late, but I can’t say I won’t deserve it. The thing I never quite understand though, is how everyone feels a sort of hall pass to judgement on people for being late. I’ve heard it all—from, “It’s inconsiderate and shows you only think about yourself and not others” to “It’s not caring about other people’s time and time is our most valuable commodity” and a million other things. I get it. It sucks. We are the actual worst humans on the planet, blah, blah, blah.

But riddle me this…why doesn’t it apply to anything else? I’m certainly not allowed to arrive at a function (late) and then start ripping into everyone else for their own personal character flaws. “She’s a gossip. He’s lazy. They don’t consider their bodies a temple, they never eat healthy or work out and their poor life decisions are going to catch up with them. And those kids?! So entitled and misbehaved. Their parents have really failed at teaching them manners or discipline and they are never going to amount to anything”. Yikes. Seems pretty unacceptable when we put a different context to it, doesn’t it? And yet with the character flaw of running late, it’s open season, free-for-all, take your best shot.

But with all snark aside, I would love to know what it IS, exactly. Why are people late? Do you think it is as simple a thing as a bad habit? Or do you think it more closely resembles an addiction? Because if you’ve never been a ‘late person’, I can guarantee you don’t actually know what it feels like to be trapped in a prison of your own making that you can’t escape no matter how hard you try. It seeps deep down into the core of your identity until it is one of the most notable things about you. The thing everyone latches on and points out and critiques. The thing that everyone knows you by.

And what will make it change? I’m 40, so if the shame and humiliation over the decades haven’t worked their transformative wonders by now, I kind of wonder whatever would. Anyway. That’s enough for today. I have to run.

Don’t want to be late.

You weren’t quite sure where he was going with it all and then he said, “Signature sad days. Everyone has them. And two weeks ago Debby and I had one.” It was the day my mom was diagnosed with nearly stage 4 colon cancer, and they were suddenly faced with a future completely different than what they’d always hoped and dreamed. I could feel the despair in his words. That floundering sense of disorientation.

“What’s your plan B?” People asked him.

“I realized I didn’t have one—there was only plan ‘A’. How selfish was I, to assume that I would live a very long time and Debby would live one day longer?”

Well much like Dad, I had a plan A. I would fall in love, get married, have lots of kids that would all grow up healthy and strong, and we would all live happily ever after. But now that I’ve lived a few years (40, to be precise) and we are rounding the corner of 17 years of marriage, I know that rarely, if ever, do things go according to Plan A. I’ve had quite a few signature sad days, the most recent one happening back in October. That is what I’m writing about today.

For those of you that may already know, and of course for the many who don’t, we have been on a journey of searching for answers with our daughter’s health and mobility for several years now. Well, a lot longer than that, if you count the years and years of “Something isn’t quite right, what are we missing?” feelings that began with her academic struggles in grade 2. But there never was an answer. And lots of kids don’t hit certain milestones at certain ages, and everyone is so different. There was nothing to worry about, we just needed to give it time. Things would click. Things would come.

But sometime in the summer of 2023, I tried going on a walk with her. Not a hike or a run, but a walk. And it was difficult. I remember feeling like my insides wanted to be on my outsides. I wanted to panic. Scream. What was happening? Why couldn’t we discern what she needed and find a way to help her? Why were the most basic movements and skills that came naturally without any input and effort to kids something I felt like I was failing at teaching? That was when I knew we had to start seriously searching.

After finally getting a long-awaited MRI and other tests, she was diagnosed with Cerebral Palsy in the fall of 2023, right around the time we were beginning to lose my dad to pancreatic cancer. In fact, during her MRI I was thousands of miles away in Iowa, spending time in the hospital with my dad. Life felt cruel and impossibly unfair.

It felt incomprehensible—that we would have to walk the road of losing my dad at the same time we were receiving a hard medical diagnosis with Jocelyn, all while my mom was still battling her own colon cancer. Plus, the cerebral palsy diagnosis never felt conclusive to me. While it checked a lot of the boxes of her symptoms, the biggest puzzle piece of all that never quite fit was the fact that CP is not progressive.

And we were definitely seeing progression.

I felt like I was being confronted with it every, single day. Another stumble, another fall. More effort given to rise up from a sitting position on the floor, more difficulty performing very basic functions. I felt like I was in a twilight zone of seeing things no one else was seeing, of watching my daughter struggle in a way that I couldn’t help, couldn’t change, couldn’t improve. At one appointment the doctor seemed to dismiss my concerns, holding to the CP diagnosis and downplaying the decline we were witnessing.

We were wading through all of this when my father died in January 2024. I felt like the ship of my life was slowly sinking on turbulent, grief-swelled seas and it was all I could do at every turn to try and upright it. Barely one year later, my mother’s health started to decline. It looked like we were going to lose her too. In between all of the many emergency trips to Iowa to visit dying loved ones, I desperately tried to juggle cooking, cleaning, schooling, laundry and raising kids, and the constant, nagging, soul-sucking undercurrent of “what are we missing?” with Jocelyn.

We were doing all we knew how to do. We were meeting with teachers to support her special education, we hired a personal trainer to work with her in the gym, we took her to appointments and got orthotics for her shoes. And all the while, I watched her walk with that stiffened gait and I knew…I just knew. I didn’t have a Latin medical term for it but I knew, that there was something else.

I scheduled another MRI and started to pursue genetic testing. And then my mother died.

The day I flew back from my mother’s funeral, we landed in Portland and I didn’t even get to drive home. Jocelyn and I stayed for a couple days for her second MRI. It is not a fond memory. I tried to make it a fun time for her—we picked up Chipotle to take back to our hotel and we watched a movie together. But I felt like a haggard, wrecked, empty shell. I wanted to weep, looking at her sitting there on the couch, eating her dinner and watching a movie like any other 14 year old girl would be, except she had just buried her grandparents and had an appointment the next day for testing when her peers’ worries were probably just hoping their grandparents would be able to make it to their high school volleyball game. I felt angry and bitter and sick. Why did this have to be our story? I didn’t want any of it. I wanted it to be different.

Randy drove up the next day to join us for the meetings. The MRI hadn’t shown anything new. “You’re doing all that you can do” they would reassure us, and of course I would feel anything but reassured. I wanted solutions. I wanted HOPE. I wanted someone to tell us what to do that would help her live her life to the fullest. Why couldn’t anybody help us?

In the parking garage, Randy held me and I wept.

“They’re not giving us anything. There’s nothing to do and I have to watch her suffer and her mobility decline when she is supposed to be living some of her best days of her life. She’s a freshman in high school and can’t do so many things and it kills me. I can’t do this, I just can’t do this.”

But we drove home and we carried on, doing the things we knew to do and hoping for some small improvements or change, and life started to find it’s footing again. As much as it can, after grief upon grief.

Then we got The Call.

Those who have gotten news before that has turned their world upside down know exactly the kind of moment I am referring to. It is the Great Divide. When you know, even in that millisecond, that life is forever separated into Before and After, the two eras that now comprise all of your past memories and future experiences. I had the same moment when Dad told me about his cancer and it put me, physically and literally, on the ground. I felt the same bottoming-out beneath me now.

It was a Friday, which I will always remember because I was making homemade pizza for dinner. I had pulled it out of the oven a few minutes before, all melty and golden, and was starting to slice it when my phone rang. Oregon science and health. I almost didn’t answer, because I was mid-slicing and I had a house full of hungry kids. But something told me…that tiny little twinge, that I should answer. So I did.

It was the results from the genetic testing.

She seemed pleasant enough so I wasn’t immediately on guard. I was expecting a quick “negative” as several of the other panels had been, which we’d received results over email about. It is only now, writing this, that I realize how silly I’d been. Of course it wasn’t just ‘negative’ or this too, would have been an email. But it was a phone call. And suddenly she was asking me where my husband was and if maybe I would like him to be on the call too, and I thought OH NO.

I left the pizza half-sliced and hurried out the patio door to find Randy. He was in the gym with our boys using the cold plunge. Even as I walked toward him, I wanted to turn and run. To spare him from the knowing that I knew laid ahead. Then at least he could continue to live in the “Before” even if I had to live in the “After”.

But he came to the phone, and we told the lady to continue. She told us that the full genome sequencing panel results came back positive (which I will always hate how positive ‘positive’ sounds, when it’s really not, and ‘negative’ is the thing you’re actually hoping to hear them say). It was an extremely rare, hereditary, genetic disease, called Spastic Paraplegia 15. It can only come about when both parents are a carrier of this particularly mutated gene. It is degenerative, progressive, and incurable. There is hardly any data gathered on it due to its rarity. So there is no telling exactly what lies in store for her. But the effects could be many.

Her words sliced into me like an arrow to the heart. Progressive. Degenerative. Incurable. I gave the phone to Randy. I felt like my legs wouldn’t hold me. Like there wasn’t enough air to breathe. Like the whole world had ground slowly to a halt. I didn’t want to hear anything else she had to say. Why would it matter? What could help? When I finally found my voice again I asked, “What about treatment? Isn’t there anything? What about stem cell treatment?” I had no idea how genes worked or even if any of it was possibly connected but I had to at least ask. “Your role is supportive” she said, tenderly. It felt like a hammer blow.

Over the course of the next days/weeks, we received a few phone calls and had some virtual meetings. I could tell they were trying to make sure we were back on our feet after receiving this life-altering news, and they wanted to give us the resources they knew to give or the little encouragement they had to offer. One doctor told me they are working on a study out of Italy for possible Spastic Paraplegia treatment, but it might not even be for her exact kind. And they were still a long ways from testing on humans yet. They had tested on fruit flies.

I wanted to throw up.

This was supposed to give me hope? My daughter would have to live 14 more lifetimes to begin to see even possible threads of change in the arena of treatment.

The very next day, we attended a party celebrating a young girl’s completion of cancer treatment. As per tradition at the children’s hospital, when they complete treatment and are proclaimed cancer-free, they get to ring the bell. And after watching both of my parents lose that battle, it was so wonderful to celebrate someone’s victory. But all I could think was, “There is no bell for our daughter to ring.” We are facing something that doesn’t have a treatment plan, a plan of action, a strategy.

I cannot even begin to describe how this situation feels, and perhaps I will never fully find a way to tell it. I am sad, at the loss of all of the hopes and dreams I carried for so long. I am shocked, at the sudden fork in the path. I am overwhelmed, at what to do next. And perhaps most painfully, I am wrestling with God in a way that is foreign and strange to me. He knit her together in my womb, and He knew. He carefully orchestrated the love story that brought Randy and I together over thousands of miles and He knew. He watched me cry tears of frustration when she wouldn’t dance in her ballet recital or participate on her soccer team or absorb teaching like others did, and He knew. And it feels impossibly distant and cruel.

Why would God allow this? How could any of this possibly be part of His plan? I still don’t have the answers. And I am beginning to think that I never will. But I suppose now we just need to find the ways we can to keep moving forward. To help support her the best that we can in our very limited ways and be her safe haven when the world is cold. It is the first thought I have each morning and the last as I go to sleep. Some nights I truly forget in my sleep, and waking in the morning is rising to fresh sorrow, fresh grief, like I am receiving the news again for the first time.

I wish I could wrap this post up in a neat little bow, with some pithy little saying about how “all things work together for good” or “God has a plan” but I can’t. I don’t have it in me. The future is far too scary and unknown and still looms over me throughout the day and squeezes the air from my lungs at night. So this post doesn’t get a tidy tagline.

We greatly appreciate your support and prayers.

Well it’s not the kind of news you ever want to hear.

Their son Steven had died, at an age far too young. Of course no one is ever prepared to get this kind of news and there is no manual on how to proceed after one does. I just remember thinking, “Another one?? Does death just come in waves like the tide upon the shore, day in, day out, until one day it comes for us?”

And I suppose in many ways, it does. But knowing this doesn’t make it any easier. And regardless of how many times it has come before, it always feels like a new sensation. Kind of like no matter how many times you have plunged into icy cold water over the span of your life, it still delivers that fresh, piercing shock each time.

It really made me think a lot about how I am (or am not) connecting with the people around me. Do I notice what people are going through? Do I celebrate their joys and grieve their sorrows right along with them? Do I take time to show I care? Do I tell them what I love about them while there is time to do so? Do I hug them when I can? Do I take time out of my day to reach out to them when they cross my mind?

I do this maybe 1/10th of the time that I should, or whatever the percentage actually is, but I know it is not nearly enough. Why is it that we tend to just assume everyone will be here forever? That we will always have more than enough time to say and do everything we want to? It’s challenged me so much to hold people closer. To really let them know what they mean to me. To tell of the ways they’ve shaped my world.

I know that in hindsight we all can think of a million things we would change, or do better, or do more of, but what if we just did a very small, seemingly insignificant thing each day? Sent a text or wrote a letter or gave a hug or a smile. We think connection sometimes requires a great cost or grand gesture or extravagant effort when really, it’s the little things that matter most.

The other day Hayes (my youngest) came up to me and said, “Yesterday I forgot to give you a hug and tell you I loved you...so I will do it twice now.”

Somehow in spite of his young age of 7 years, he possesses a deep self-awareness and ability to communicate his feelings. He is the one who will say things like “I just don’t know how to say how much I love you—I wish I knew how to say it.” Or “I do want to go to the party but I will feel sad that you will be here at home alone.” Or, “How was your day today Mom?” and there is no fooling him with a placating answer. Regardless of what I choose to say he will know how it really was.

I wish I could bottle up that gift of connection and give it to others. And I guess in a small way we can, by offering it ourselves in hopes it will be received and reciprocated. But we have to first be willing to be vulnerable.

In any case, I am going to make myself a little goal of doing something intentionally each day this next week to connect with someone. I don’t know yet in what ways that will take shape or form, but I encourage you all to do the same.

We just truly never know how many days we have here, with anyone.

Here goes:

1. Cure cancer. After losing both parents to it within 2 years, that is a problem I’d like to see solved, to say the least. And while I was at it I would also find a cure for my daughter’s condition as well.

   

2. Open a coffee shop that maybe doubled as a gift shop/boutique/thrifted finds shop in the heart of our little town where people would meet and gather and foster connections. It would start a ripple effect of little businesses coming in and would bring great growth and opportunity to our hometown.

   

3. I’d finish and publish my book chronicling the last 2 years of my parents’ cancer journeys and all that entailed. After that I’d write a series of middle grade fiction, to give that age group something to read that features characters with honesty, courage and integrity, instead of the usual vampires/dragons/disillusioned princess stuff. Then I would travel all over the world on an international book tour. Because if you’re going to dream, dream BIG.

   

4. I’d start a podcast where I talk about all the things that intrigue me, but mostly interview different people and get their life stories. Then if they were willing, I would write their biographies. Everyone’s story deserves to be told.

   

5. Join a theatre group and do plays and musicals. Maybe even make it to the big stage one day. Broadway! Hollywood! Movies! I’ve always had a love for the stage and something within me comes alive when I get the chance to take on a different character and bring their story to life.

   

6. (Dorcas didn’t stop at 5 so I don’t have to either) I’d change the school system. It would become the ultimate hybrid model for those who value the ideals of homeschooling (myself) but feel unable to implement homeschooling well on their own (also myself). It would allow kids lots of free time for imaginative play, lots of time outdoors for nature study, and very early on there would be assessment of actual skills and aptitude to direct the student’s learning path. We just don’t all need to take higher Math. Period. That’s a hill I’ll die on.

   

7. I’d find some way to eliminate fast fashion and reduce waste. Companies like Shein and most of the brands sold on Amazon are some of the worst culprits. Fast fashion contributes upwards of 90 million tons of textile waste annually, with most of that ending up in a landfill. Inexcusable. We have enough clothing right now on the plant to last 6-7 generations. And although I don’t know what the long-term solution is, this is one of the reasons I love to thrift and reuse clothing that would otherwise be thrown away.

   

8. I’d open a gym catering to women who were at a beginner level of fitness, or maybe had never lifted weights before. I’d love to show them how everyone could (and should) be lifting weights, and teach them the many health benefits it brings. We would pair it with a nutrition course and accountability, to show how our small daily decisions can add up to making a huge impact on our lives. Childcare provided.

   

9. I’d form a network of qualified providers who were willing to donate their time to clients for free counseling. I believe everyone needs “therapy” but also, we really just need someone willing to listen. I know there are people out there who would be willing to help others in this way and I know there are countless people in need of it, they just need to be connected.

   

10. I’d start a workshop/class/network for people like me who love the idea of gardening, making sourdough, preserving food, and other domesticated pursuits, but also lack the skills and attention span to make it happen. Some combination of contracted services, coaching and classes, and communal style work projects as a group.

Ok that’s a wrap. This was fun! And really has got me thinking—maybe we should just actually try to do the things we’d do without limitations as if we didn’t have any. One never knows, you might accidentally succeed.

And now it’s your turn—leave me a comment saying something you’d do!