Tag Archive for: cerebral palsy

For the love of mountains and Jesus; or pink slippers, 10% and unexpected grace.

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(An entirely different post than what I planned be writing this week…)

I have been chewing on a post for the last week and half and it is not this one….

Typically, an idea forms and the words come relatively quick. I reword and rework, sometimes erase and rewrite, but the words and ideas seem to just come. Writing for me has always been a joy, a place to release my thoughts, hopes, fears and prayers into the wide open. I can’t begin to express how important writing has become to me – and your comments, encouragement and ideas make it so much better.

Last week was not the easiest week and I am not even sure why….

I had a post started about some family conflict, how it is NOT always easy or pretty or even kind around here. And yet, it has not felt quite right to publish here, YET. Maybe in time, maybe not.

The reality is, I work really hard to be authentic, to not buy into only sharing the positive, “picture perfect” moments; normalizing both the struggle, the hard feelings AND the beautiful ones. And this past week, the beautiful seemed harder to find. Until yesterday…

A couple days before my big kids left to go on a church youth group trip to Colorado, we all seemed to be having issues with each other. Tension seemed sky high, all of us ruminating our own struggle. Suddenly, the kids were packed, leaving our house and off on a trip to Colorado for the first time.

My husband, youngest daughter and I remained home in a much quieter house. We visited dear friends for the weekend they left, but when we returned Sunday afternoon, the quiet within our walls was both needed and a bit unsettling. My mind kept thinking, “is this how it will feel a year from now, when E goes to college?”

Funny thing though… THIS post is not yet about my daughter marching toward senior year at an ever-quickening pace or my own both/and/and/and moments about that. My heart skips as I write that sentence, both excited for my girl and grieving already the future changes to our family as she makes decisions. But this post, this one that is jumping from my heart and fingers so quickly I can hardly keep up as I type, is about mountains, love and being seen.

Life for me growing up and navigating teen years was just full of unique to me challenges. EVERYONE can speak to their own challenges, none better or worse, simply our own. When my high school youth group was going to Colorado Challenge, I was not ready. I am sure that I missed an amazing experience and yet, I was not physically or emotionally aware enough at that point in my life, to face the difficulties of hiking, rappelling and advocating for my physical needs. I didn’t have the confidence. I believe it was absolutely part of God’s divine plan for me that I didn’t go THEN.

When I began working for a grassroots teen ministry just out of my undergraduate degree, I was invited to go with the church who had started and most supported this ministry. Though I was still anxious about the landscape and being out of my comfort zone, I was also beginning to understand my needs and voice. I know without a doubt that God wanted and made the way for me to go, AT THAT TIME in my life.

Before I gush poetically about the natural beauty and awe-inspiring scenery of Colorado itself for many paragraphs, (If you’ve been there, you know right?), this about sums it up, at least for me.

 “There were those green, undulating hills and this very beautiful river, the Colorado. The place is inspired and inspiring.”

– Terrence Malick.

I was in awe of Colorado, from the scenery as we drove through the state, to Colorado Challenge and every experience from the first to last time I was blessed enough to travel to Colorado, 5 trips in all. The last, was the one I had only dreamed of, worked for and raised money for so a group of teen moms could attend camp like their peers.

Each time I went has it’s own beauty and sacred space. I have memories I will forever cherish, tears that led to lifetime changes and awareness, places marked on my journey with Jesus Christ that allowed me to meet and love him personally. Moments where worship was ALL of who we are, you can’t get near enough to God’s own heart and call and YES to him is the most right, easiest answer.

I also had breathtaking moments of love, acceptance and grace that until that point, was new to me. From sitting behind students throughout evening chapel events and literally watching and praying with them as they said YES to Jesus and relationship to him to the grand view of Pikes Peak from camp. Whitewater rafting at Noah’s Ark, horseback rides through stunning trails, conversations late into the night, even helping the girls navigate conflict. Memories with my sister-friend and the students who bravely allowed me into their hearts and fears.

The first year I went, I struggled with many of the physical aspects of getting around the rustic camp grounds, roots, jutting up from the dirt in odd ever-changing directions, loose stones and steep inclines, not to mention that climbing was involved in nearly anything that you wanted to do for activities.

When we arrived at Rainbow Falls where groups were given the opportunity to rappel, I instantly knew  I could NOT climb to the top of the cliff we were supposed to rappel down without some serious back-up. I didn’t know the kids or leaders well, because I was asked to be an adult leader last minute when one of the others was sick. But I fell prey to believing that I, as an adult, “should not, could not,” ask those kids or other leaders for help climbing because “I am supposed to be an adult and help them!” Thank goodness for therapy that helps us see our own faulty beliefs and some of their roots.

By the next summer, I had built strong relationships with a number of the same high school kids who refused to let me “wait at the bottom,” this time around, walked with me carefully and safely up cliff and then helped me rappel! It is still an exhilarating badass, capable memory that means so much to me because it felt so impossible and I yearned to try.

One night, after worship had blown the roof off the chapel, I sat down next to a student named Ryan who just had a magnetism to kids around him. He had a smile that was both mischievous and kind, a signature baseball hat always worn backwards. He was wrestling in a way that I could feel as I sat next to him, listening and partly, just being present in whatever was the internal fight. “Why do you even want to listen?” He finally asked and his battle with something was palpable. I just prayed as tears filled his eyes. It was a holy, heart-wrenching space and yet, a memory I hold dear from an evening in that chapel in the mountains, overlooking Pikes Peak.

 In camp was Soldier’s Mountain, again something I had only heard about. I wrestled with longing and grief, the limitations of this body, when the kids begged me to come with them. A group of teen boys moved me to literal tears when they nearly plowed me over in the snack shack on our next to last night in camp.  They were organizing a sunrise hike up Soldier’s and “were bringing me with them!” They refused to take my no for an answer, (thankfully) and literally walked-step-by-slow-step up a steep incline to the top of Soldier’s Mountain. Reaching the top was an absolutely surreal moment, a picture of trust, care and acceptance that showed me Jesus himself in those teenage faces. Those boys are still “little brothers” to me, many years later.

There are so many more moments, the beautiful, brave teen moms that showed me as a single 25 year old what motherhood and sacrifice mean, how God can use everything to bring us closer. Jaw-dropping scenery, over and over, devotion from youth leaders and the very definition of brave, so many times I lost count.

Safe to say, Colorado has an important place in my heart. I even had dreams, hopes and prayers about moving there in my 20’s, but that too, was NOT God’s plan for me. My best friend played “Wide Open Spaces” by the Dixie Chicks about that time and it was as if they had written it for me… (Perhaps my version of how Taylor Swift “just gets it!!” in 2023?)

Life continues, I got accepted into graduate school in Michigan, met my love and the dream changed. God knew…and yet, I have for a long time told my kids about my love for Colorado, the incredible beauty and how God moves, especially during camp experiences…

I think in our relationships, there are always “mountain top and valley events,” and for me, relationship with Jesus is included. The mountains, whether physical and emotional, change us. Tremind us of the passion, the love and the goodness that ARE mountain-top experiences in relationships, especially when the greater amount of time in relationships takes place on the flat ground or the valleys (not always the most exciting parts of being in relationship.)

I have been doing clinical work for 22 years now, so my days of youth leading and traveling with students are a past chapter. So much so, that it caught me off guard when the church we’ve been attending since December began talking about a youth group trip to Rocky Mountain High in July in Estes Park.

I realized that my teens would get to experience Colorado in their own way; so. good.

I knew that the scenery would move them. I was even somewhat prepared for their personal “mountain-top experiences” and “the impending post-camp blues,” both familiar to me from my days as a camp counselor at Camp Geneva and Colorado Challenge.

What I really hadn’t considered for them was how this experience, uniquely their own, would truly translate, change them and shape them. How this week would give them lifelong memories with friends, leaders and Jesus Christ.

We picked them up yesterday in the church parking lot…rolling off the bus sweaty, exhausted, hoarse and beaming. Tight hugs, high-fives and inside jokes that I am sure, I will never here the beginning or the end of. The swath of parents hung back, both debating about embarrassing kids with big hugs (perhaps just me??) and trying to respect the vibes they were sending off. It was evident how this group of leaders and kids had bonded.

On one hand, I felt so old; and…so very thankful that after the pandemic changed so many things about so many churches, we are finding our way into a church community again, with our beautiful kids leading the way, fearlessly. A couple leaders came and introduced themselves, blessing us with kind words about the kids’ behavior and character. They may never know what that meant to us…

For the next few hours back home, the kids talked over and around each other, a unique shared experience of going on youth group trip as siblings and friends and all the dynamics in between. They showed us pictures of stunning mountains, sunrise views, elk roaming downtown, “right by the jerky store” and one of their leaders, dressed in a bear hug nightgown, pink slippers, shamelessly directing traffic in downtown Estes Park. They described “worship with so many kids, all raising our hands and holding nothing back.” They described messages from Megan Marshman, who presented them with opportunity after opportunity to know Jesus’s love, desire for relationship and sacrifice in such personal ways.

They told us about how as a group, they would nightly share their last 10%, allowing their friends and other leaders into the parts of ourselves that we all hold back, because, “if someone knows ________ about me, they will__________ (leave, tell others, think I’m a _____}”, or many other reasons.

Our kids shared some hard stuff about their own struggles. We are so very proud of them and shared with them our experience and belief that God will draw us in, rather than shame us out. They told us how their leaders discussed some of their own struggles, encouraged each other, then asked the group to pray over our kids and family.

I’m not sure if that moves you, but I get goose bumps (again) as I write those words.

It has been said, “It takes a village to raise kids.” The older I get, the more our village blesses us. The more our village draws us closer to Jesus, just by being WITH, authentically. The more the village ebbs and flows. The more the needs change within in the village, within ourselves.

I was once on the front lines with teens, staying up late, running on fumes, holding their stories firsthand. I was surrounded by a different village as I was a part of students and oh my goodness, those were the days….

Now…my kids are traveling; their village will change and I may not even know all their members. They are being challenged, sharpened, changing, softened and from what I know today, going all in with Jesus.

I am profoundly grateful for those who walk with me, who have shown me the heart of Jesus in Colorado and beyond. For the relationships I still have because of heart connections on the mountains and deep in the desolate valleys. I am thankful for those who see us not as we are but as we can be and have the courage to say so. I am thankful for health and strength. May we all be surrounded by those who build up when we need it, sit quietly and those who hype us into believing in ourselves at exactly the right moments.

“Colorado has always been a good place to find what you’re made of.”

– John Hickenlooper.

To Jesus, E & E,  Colorado and everywhere in between.

Both/And

Philippians 1-3-4

Some thoughts on imposters, cheating and battle hymns.

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“Mom, your calves are popping!” My daughter exclaimed last night. I was walking in front of her as we left our dear friend’s house after an evening of feeling more blessed when we left than when we’d arrived. “What does that even mean????” My inner voice whispered. At the same moment, my body startled (involuntarily) as she verbalized something about these, MY legs, now the center of attention. Even after years of processing my own reactions, connections to emotions and everything in between, I found myself reacting just like I typically do to positive comments, especially about my body: with a passive tone of voice, “well, thanks, I am not sure why you are saying that,” or “thanks, but…” Besides the fact that “popping” is a new one to me and I can only assume that is positive, I still, at 50 do not know how to consistently appreciate this body.

As I was stretching and working on these muscles this morning, my mind drifted back to my daughter’s exclamation last night. Like a picture that slowly comes into focus, I realized that as I thought about her positivity about my muscle tone, the feeling I have most, is shame….

I wonder if you relate? In my office, I so often see eyes drop, hear tones of voice become softer, garbled, drift off or even a little disgruntled when the idea of appreciation of self is brought up. I’ve said it in other posts (and probably will again), that our society is 80% kinder to others than ourselves. (Check out the work of Dr. Kristin Neff at The Center for Mindful Self Compassion if you want to read more.) While I experience this number as higher in my work with clients, I too struggle to be equally kind to myself as I am to others. Why is it so hard to just say, “heck yes, my calves are popping?”

I began, with intentional curiosity to think about the shame I felt as my daughter complimented my calves last night. Much like the moment when we realize the correct answer when taking a test, I realized that when she complimented my calves, I felt like a complete imposter.

Cerebral Palsy causes my muscles to misfire, the part of my brain that regulates the “firing” is technically damaged. The vulnerability in me winces writing that and yet, it is the truth. My muscles fire beyond my control all the time, resulting in a lot of tone. The deep down thought for me regarding all my tone is that “it’s not real, athletes work for that and therefore earn the compliment. I don’t.” It is also hard to appreciate tone that can also make moving become much more difficult.

The very next thought was a memory of moving to another city just before high school, meeting new friends (that summer) and having my new friends remark about my “ripped biceps.” My only context for such a phrase was watching weight lifting in the Olympics. I began to wear longer sleeve t-shirts because in my mind, I didn’t want to look like a body builder. I didn’t know it was a compliment, and I felt fake. I hadn’t done any athletic hard work to earn their confusing to me compliments about my body. The fact was, people were complimenting a body that I didn’t like, understand and truly, wanted DESPERATELY to change. There weren’t enough positives for me about this body at that point to counteract my insecurity and imposter syndrome.

I wonder if I am not alone, that imposter syndrome is alive and well inside all of us to one degree or another, this side of heaven. Defined as the condition of feeling anxious and not experiencing success internally, despite being high-performing in external, objective ways, this condition often results in people feeling like “a fraud” or “a phony” and doubting their abilities. It is most often born from insecurity that has taken root and grown a tree of shame inside us. Once that tree is there, it is hard to see around it, becomes a part of every picture we have of ourselves. And for me, it has become siblings with the idea of “cheating.” Please let me explain.

One example…when I upgraded this spring to a recumbent pedal assist bike, I really had to work through the idea of cheating with that extra assistance. The perception with e-bikes, at least how I heard them, was that “people are just joy-riding.” The first time I rode that bike, 30 minutes after we purchased it, a neighbor commented, “that’s such a cool bike,” then looking closer stated, “oh, it’s got a motor, you are cheating!” Shame, imposter and “cheating” hopped on my bike and rode along. I can go faster than my husband on our rides now, but feel like I have to qualify it with, “yea, but only because of the motor.”

How many of us have those same passengers, riding around permanently? You may or may not be shocked to hear how many times I hear about imposter syndrome in the midst of sessions. Mine is occasionally cerebral palsy related, but it is many reasons for many people. It is like an old soundtrack that is ominous, “what if they find out this is the real part of me, not what they might think or believe…”

As I sit quietly, truth descends quickly, much quicker than it did when I was younger. I can kindly let the difficult feelings and memories (even shame) come forth, sit with them and then also engage in the truth. I know that (even when my perceptions and insecurities want to lie and make me believe otherwise) we are NOT imposters. God is the God of truth and gift-giving. He is perfect in his making and perfecting who he is within us. I am so very grateful….

“I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.” “Psalm 139:14

Both/And in being human, right? We KNOW this verse perhaps, but applying and believing it? Much more difficult. One of the ways I help clients is to imagine how we would speak to our dearest friend and try to counteract that loud imposter with the “kindest thing you can say to yourself.” I encourage them to slow down and find a positive truth to counteract the loud lies…one truth at a time.

I pray for overwhelming kindness and compassion for ourselves and others. I pray for appreciation of the bodies God has created and given. And I pray for overwhelming truth and care, this side of heaven.

I was having a conversation with friends yesterday about “what our walkout song might be?” For me, there has been an anthem shared from a dear friend years ago. It embodies hope and crying out in the beautiful and the moments I brought to my knees.

https://youtu.be/BqgW727a-RU

“Hallelujah, hallelujah, every broken heart, be brave. Hallelujah, hallelujah, the Lord will make a way.” A prayer and anthem for us all. It is my deepest, truest prayer.

May we give the lies to Jesus, rest in his love and truth and keep doing all he has called us to. May we always keep trying to be kind, as much to ourselves as we are to everybody else. May we let our own imposter know that they are no longer needed and that our true self is worth trusting. May we learn to accept others appreciation of us with the same love and care it was given.

Both/And

Psalm 139

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It was a snowy afternoon, one of those where we as a family had a clear Sunday on the calendar, a truly miraculous thing. Even more shocking to me, as a mom of teens, was the fact that after lunch had been cleaned up, I wandered into the main area of our house and found it empty. This wasn’t new, especially as clean-up began. The family tale has always been that my grandpa’s sister, Aunt Betty, would always “need to go the bathroom” just as clean-up began. In reality, I think we all want to disappear at these points in post-meal chores, but our kids do a fantastic job helping, all over the house. Still, on the this particular day, I had gone to change clothes and found myself in a seemingly empty house.

I wasn’t sad – a fire started in our fireplace, courtesy of my husband who I could hear in the garage, already invested in something of his own. I curled up in our oversized sectional with a cozy blanket, trying to decide what I needed with this unexpected gift of quiet and being alone. I grabbed a journal, which didn’t feel quite right. Not my coloring, or napping. What did I need? 

I suddenly remembered the documentary on Mr. Rogers that had come out a few months prior. Yes! I could feel something align inside myself, but was not sure why…after searching the too many streaming services we pay for, I found “Won’t You Be My Neighbor” and could feel my soul settle just a bit further. With a cup of tea, fire crackling, my favorite fragrant candle giving me sweet memories of summer and my pup snoring on my lap, I hit PLAY on the remote and heard a familiar sound…. a few piano notes, a voice so kind, and THEN…. the familiar, ringing bells of Trolley. I couldn’t help but smile and instantly began to sing along with a seemingly forgotten song…”would you be mine, could you be mine, won’t you be my neighbor…” (are you singing along too, just reading the words? I thought you might be…)

The first few minutes gave glimpses of Mr. Rogers history, beginning with a sepia toned video of a young Fred Rogers, tickling the keys of a baby grand piano, rehearsing how he would describe feelings to a child. Cut to a group of children clamoring for his attention and with laser focus, the gift of his attention and response to one after another. Cut to a description from his producer, describing the many reasons why “Mr. Rogers Neighborhood SHOULD NOT HAVE worked” and then, this: Mr. Rogers, saying earnestly into the camera, “Love is at the root of everything, all learning, all parenting. Love or the lack of it. What we see and hear is part of what we become.”

As strange as it is to say regarding a documentary, I was completely riveted in 4:41 minutes. I could feel a few different things at the exact same time: It felt like a warm sunbeam shining on my face, simply seeing images and hearing Mr. Rogers, Trolley, Daniel and the many other sounds of the neighborhood. I sat there, my adult self invested in the well-done documentary, and the delight of reconnecting with an old friend, the safety and understanding in his words, because these have become such a core beliefs for me as well. Up until those 4 minutes and 41 seconds, I hadn’t known that he was someone with whom I held such similar beliefs. 

A memory emerged, a fuzzy photo in my mind of watching Mr. Rogers Neighborhood when I was very young. I could see myself, legs in a W, munching on cheerios, enthralled with Mr. Rogers and his land of make believe. I recalled his puppets, their personalities, the big red, yellow and green light, his voice, calm, caring and completely free of judgement. 

What t started as a feeling throughout my body that day, became something much more over the next 90 minutes. I wanted to know more and more still about this neighbor who I hadn’t seen in far too long. I found the melodies, stories and words returning from a place stored deep in the recesses of my heart, not even knowing I could still feel and sing every word.

I sat there there, a grown up, both safe in my living room, protected from the frigid Michigan winter, comfortably full from a Sunday meal with family and an acute awareness as I watched Mr. Rogers, heard his voice and character eloquently described, that he was indeed a safe, lovely friend to both myself and countless others. The kid inside me remembered the lilt in his voice, the comfort and calm, even as he talked about extremely hard things. I had not been through a war or natural disaster, traumatic death at a young age or divorce. Yet, the child inside me who had grown up with CP has been grappling with differences that I had no idea how to voice, acknowledge or process.

Bessel Vander Kolk writes in The Body Keeps the Score, “For our physiology to calm down, heal, and grow we need a visceral feeling of safety. No doctor can write a prescription for friendship and love: These are complex and hard-earned capacities. You don’t need a history of trauma to feel self-conscious and even panicked at a party with strangers – but trauma can turn the whole world into a gathering of aliens.

I watched in tears as he normalized issues of both acceptance and pain related to racial atrocity, by inviting Officer Clemmons to cool off his feet in the same pool; as he sang with a young boy, “its you I like,” after sitting with Jeff Erlanger and hearing his story about life in a wheelchair; and as he normalized, simply, “being kind.” He had even left a life-changing impression on a gorilla. Unreal. I was thunderstruck with the ideas that were so important to him, are some of the same beliefs for me that as a therapist (and human) that are imperative in teaching clients about feelings, empathy, self-compassion and healthy coping. 

I began to take notes, noticing the connection and truth I felt internally as Won’t You Be My Neighbor finished.

“If you really want to communicate, the most important thing is to just listen.” – Mr. Rogers

From his character, work ethic, kindness, gentleness and admitted imperfections, I felt an odd camaraderie, almost as if I could understand and value myself better because I was seeing him through the documentary.

He had a tremendous way of just being with people, allowing people to talk and listen well in return. He answered as much of his fan mail as possible, thousands who over the course of time, and for millions, contributed to how they had felt as a kid and still as an adult, even though they only ever met in the neighborhood, ON TV. He showed me and so many others that we were seen. 

He was ahead of his time, tackling issues involving racial inequality, fear, divorce, conflict (even war and assassination) death, inclusivity and healthy coping in eras where most of these might have been avoided. He was also an ordained Presbyterian minister, though he seemed to let his life speak to that so much more than using the words, at least that is how it felt for most in his neighborhood. 

Tom Hanks, who played Mr. Rogers in the 2019 film, “It’s a Beautiful Day in the Neighborhood,” said this while promoting the film: “‘There’s an acronym that I’m using now in my own life – W.A.I.T., wait – which stands for “Why am I talking?”‘ Hanks said. ‘You should just sit and start listening to everybody who comes your way and you’ll be amazed at what you learn.” I’ve shared with many clients while also reminding myself. It is just one of many, gems that I hold dear from the life of Mr. Rogers. He emulated my Jesus is so many ways, though I doubt he would’ve seen that about himself. People matter, their thoughts and feelings, needs and struggles. Kindness MATTERS, to others and ourselves. Play, learning and joy, are imperative.

I found myself studying, reading books and videos about his life in the weeks following the snowy Sunday. Everything I read, watched or discovered about Fred Rogers led me back to Jesus, my own calling and gentleness. 

As I have read, watched re-runs, highlighted quotes and wished I could I have tea with Fred, (and honestly, purchased a few more cardigans and even a t-shirt with his image on it) I am left with these truths:

-We are all human so there is no pedestal necessary. Our lives WILL touch others, in either the beautiful or the broken ways. I can only hope and strive for the beautiful and apologize when my broken (or mean or misguided or thoughtlessness) takes over. Mr. Rogers, as well as Jesus, show me the wisdom in being slow to speak, quick to listen and even quicker to offer love. 

“The greatest thing we can do is help somebody know that they’re loved, and capable of loving.” – Mr. Rogers

-All the things MATTER! How crayons are made, how to manage the mad, sad or every other; consistency, presence and play; gorillas, clocks, relationships, honesty, music, humor, reading, artwork, dignity work ethic and I43. (I’ll let you look that one up.) 

“I think Mr. Rogers was one of those people who do their his work seriously and hope that someone would pick up on the seriousness of what they are about.” -Betty Seamans, producer and actress, Mr. Rogers Neighborhood

Don’t we ALL hope that we will be understood, seen for what we are about? I think Mr. Rogers knew it wasn’t just kids that needed to hear how to love and be loved, feel and be strong enough to talk about it. I think he hoped that in teaching kids, it would be easier as adults. The the short version of my favorite quote is ‘whatever is mentionable is manageable.” (I’ll let you look up the long version, it’s also in the beginning of the bothandkeepitreal website.) This is an important belief in my work as a therapist, the seriousness of what I am about. I absolutely BELIEVE in the work of knowing and loving ourselves. My writing has become the joy and purpose in sharing my hope and beliefs. 

What are the important parts of you, the seriousness of what you are about? Don’t be afraid to share it in safe places, it is there you can be seen and cared for, exactly as you are. 

“I like you as you are, exactly and precisely, I think you turned out nicely, and I like you as you are. I children need to hear that, I don’t think anyone can grow unless they are accepted exactly as they are.” Mr. Rogers.

-“His theology (just like Jesus) was love your neighbor as yourself. It was deeply personal and wide open to all,” stated a cast member in the documentary. I think this is why Mr. Rogers still resonates with so many people, 20 years after his death. He was such a human example of the God he loved even if he never said it on the program. This past week, someone noticed the Mr. Rogers sticker on my cup that I always have with me. He commented, “I loved him. There are not people like him anymore.” I stopped myself from fangirling about my friend Fred, but I thought to myself, “I’m really trying to be!”

Still, I know that his unconditional, kind and gentle heart was not and is not the norm. The documentary also explored the nay-sayers and doubters, those who blamed Mr. Rogers for contributing to an entitled generation. Here is the last truth, at least for this post, right from the documentary itself.

“Mr. Rogers was not talking about entitlement. If you don’t believe everyone has inherent value, you might as well go against the fundamental notion of Christianity that you are the beloved son or daughter of God. ” Mr. Rogers explained what you are special means in one of his commencement speeches. “You are special ultimately means that you don’t ever have to do anything sensational for people to love you. You are loved just as you are. You are endowed by your creator with good.” Junlei Li, former co-executive director of the Fred Rogers institute.

“People were intolerant of his tolerance…” Tom Junod

Thank you Jesus and thank you Mr. Rogers for showing us how to live a different way. Thank you for your relentless pursuit of people, love and something so much greater than yourselves. 

May we follow in both Jesus’s and Mr. Rogers example: be tolerant, kind, loving neighbors, to ourselves and each other. May we find Jesus in each other, give grace and mercy extravagantly in many ways and may we love without ceasing….

Both/and

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PS If you are curious about some of the books or resources I’ve found about Mr. Rogers and his impact, please message or comment and I try to share!

“Hey John, you need one of those!”

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If you know me or have followed my social media for more than this month, my love and joy in riding my bike is evident. I always relish the freedom my bike gives me, the effort of pushing my overly active muscles and the wonder of feeling my body accomplish this thing I ask it to, just in different ways than someone without CP.

There are (nearly) always comments when I ride, however and it is a complicated thing to grapple with…

My journey with biking has been a long one, one of watching, trying, longing, trying again and finally, arriving…Let me start somewhere near my beginning. I was born with cerebral palsy when my parents and sister lived in New Jersey. By God’s providence, I was born in 1 of the 2 parts of the US that had a neo-natal intensive care unit (NICU) at that time. Had it not been so, I truly believe I would not have survived my early birth, breathing challenges and all the growth that had to occur outside of the womb instead of those 7 more weeks within. I know I keep writing, “that is another story for another post”, but in many ways, this is. In time, I hope to write more of my story. This format feels right to me for snippets, essays and in my mind, a focused reason behind each post. That story? Well, that one could be novel of its’ very own….

Suffice it to say for this moment, that I was extremely blessed to be born where I was in the world, if not when (7 weeks premature). With all the both and in the world, I KNOW God is in it, through it and in him, all the reasons hold together. (And, I can’t wait to curl up in a big cozy chair with the BEST cup of tea and hear the reasons when I get to heaven. I don’t really know if it will matter at that point, but I DO envision his hug to end end all hugs and my big sigh of relief at his telling and understanding of ALL that it has been.) See, that by itself could be a novel!

Even though I know God holds it all together does NOT mean that growing up with CP, making sense and facing my own challenges WITH IT are easy. In fact, CP has been and will continue to be, my greatest teacher of Both/And. It is the greatest “normalizer,” (if that is even a word?) I will ever know, of having so many feelings at the EXACT same time….

You see, I don’t think I knew or felt different than anyone in my youth. I think it just WAS for me. I pranced on my toes for years, because my hamstrings and heel chords were so tight that was all I could do. But very young, my dad worked with me a lot to find my own walk and I think once I did meet those “normal milestones” (a bit later than the average person,) I think I took off. And my particular diagnosis was “moderate.”

I don’t know the day that it changed for me, the reality of different, (and the shame that came with that particular realization), but I can tell you I remember moments and feelings in my body.

We lived out in the country when I was little, on a dirt road, right next door to a pig and blueberry farm. Our ranch home sat back far from the road, up a long driveway and just past the pond my parents had put in. It was “better than a swimming pool,” our place for splashing, catching tadpoles, playing on innertubes and for my brother, catching fish. One day we even looked out the front window and saw one of the massive pigs from next door, relaxing and resting in the shallow water! Her owner had to dangle one of her bleating babies while as he sat, legs swinging from the back of his pickup truck to get her get out of the soothing water and hot sun. Slowly the driver drove while the owner called to the pig, baby crying, until they disappeared in a cloud of dust up the drive to the house next door. It was a sight to behold…

I swam, ran, played in the woods with the neighborhood friends. Still, as I grew, I had difficulty keeping up with my younger brother and his friends playing capture the flag, and envious of my sister and the other neighbor kids who could take off down our winding driveway in the woods on their bikes. I saw speed, freedom and fun as they hopped on effortlessly, yelled to one another and gathered speed. I think my mind compared it to flying!

I begged my dad to teach me. Begged! And bless him. We tried, and tried and tried. I would fall, cry, become afraid and then eventually try again. But I think after awhile, we both knew that this was one of those things impacted by CP that I or he could not will away. I was crushed and I think for the first time in my life, realized I was disabled and had some limitations.

That sting did not disappear. In fact, I think it festered. I had many surgeries, changing my bone structure so that I had the best possible outcome for mobility with my particular range of CP. It is SO different for each one of us, with similarities perhaps, but each case, (1 in 350 people) looks different than another.

I dreamed of MOVING this body – whether is was ice skating on our pond, swimming, running, later roller blading and yes, still biking. I felt both trapped within a body that felt chained and was so hard to explain and I felt “bad for not having CP worse,” as though I should only be thankful that I could walk, talk and function as well as I could, almost like survivor’s guilt only “moderate CP guilt.”

A few days before Christmas, mid-seventh grade, my parents rented one of my favorite movies from Blockbuster (Savanah Smiles.) I loved movies and this particular one was one I had loved going to see with my Gram in the theaters. I disappeared to our basement to watch it and was in my own little heaven. Suddenly, I heard my parents calling me upstairs. I was ornery to tell the truth. I climbed the stairs and then realized they were calling from outside in December. I am certain I became a bit more than ornery, but went anyway. As I opened the front door, I could not believe my eyes. Sitting on our porch was an bright blue, oversized tricycle with a big white basket in the back!

You might be thinking, really, in 7th grade? And I hear you… I don’t think it occurred to me to be embarrassed about a trike. I think the freedom (and flying) was first and foremost in my mind. I will never forget that beautiful thoughtful gift from my mom and dad, or the forethought they had about adaptation. My parents even got permission for me to ride that bike in the school hallways of my Jr. High that winter. Only once was I going so fast that I hit a corner and got my beautiful bike on two wheels and almost tipped. I learned that lesson, quick!

I rode that bike until I began to drive, literally FLYING. When we moved to Holland and our house was a stone’s throw from Lake Michigan, I was there nearly every day in the summer. It was joyous. But as I hit about 11th grade, someone yelled, “why you riding your grandma’s bike?” and it was like hitting a brick wall. Shame and pain took the joy right out of the bike and I retreated. I gave the excuses of driving, but I knew it was the mean comment in the middle of heavy beach traffic.

Years later, in my 20’s, my roommate’s parents came for a visit from across the state. They’d discovered “banana bikes” for rent by the beach. Jo (roommate) and Don(her dad) got talking about my challenges with bike riding, Holland’s beautiful bike paths and “how to get Stacy on a bike!” Don ended up finding one for sale and driving to get it for me. Again, the most meaningful gift! I am forever grateful. It sat low and had 3 wheels (almost resembling a Hot Wheels, remember those?) with a banana yellow mesh seat. I rode it for the next few years until it’s wheels almost fell off.

Then a few years into marriage, my husband and I wandered into a nearby bike store. There, gleaming in the window, was a long Sunseeker recumbent bike, fancy and new. I had never heard of such a thing! We talked for a long time about it and again, the truth? It was WAY out of our price range…and my husband got it for our anniversary anyway. It was a gift of being seen and heard, after hearing my longing about bikes for YEARS. He even outfitted it to pull a Burley when we had our daughter, then our son.

And, if I am honest AGAIN, I became complacent. It was a lot to get the kids tucked in the Burley, wiggle their helmets on, get the bike hooked up and THEN go for a ride… I was a young working mom and it was a lot to get up and go. It is amazing to me as I look back, how the desire for something was so big to me and then, once I had the means to go, it was easy to push it away “til tomorrow, then tomorrow and many after that,” because I was tired or it was too much effort.

Fast forward a few more years. My son began working at a local bike shop, learning from the best how bikes function, what is most helpful for each of us, in a unique situation. We strolled in and found a shorter, zippier recumbent and I was instantly smitten. That bike took us all on a journey of discovery, growth, health and connection in so many ways. I had a goal of riding 365 days the next year – the rides we all took! It was, FREEDOM personified. There is so much more to say, feel free to ask or comment! I love to talk bikes and adaptation…

As great of a start it provided, I quickly craved more power than my zippy blue bike was able to provide.

I’ve now upgraded twice, first to a Fat Tad (a present for my birthday, a shiny red recumbent with fat tires and more attitude!)

This past spring, after some wise conversations about the mechanics of my rides, I upgraded again, to a Fat Tad with pedal assistance. This provides a more consistent pace, the ability to cross streets, ride rough terrain and increase the effectiveness of my workouts. Each upgrade has provided a new truth in my heart: I AM able, capable and AN ATHLETE.

And…I at times have experienced some downright mean or nasty statements while biking.

It is not uncommon on the ride to hear, “Hey, honey, that’s the bike we need to get for your mom!” or “You better get some lights on there if you want to stay alive!” There are other variations of the same theme.

Last week, as I excited Windmill Island, a man was walking in, saw me and yelled a few cars down, ” Hey John, you need one of those!” He had slowed down, staring a bit at both me and my bike.

I slowed, knowing I was now the object of “show and tell.” This happens often and typically, I try SO hard to see these interactions as a chance to educate about CP, how someone could feel in this situation. Truly, I do…and sometimes I am just too tired to educate and listen.

I rolled near John, who walked slowly over to me, as quick as his body would let him and began looking my bike over. I’ve heard it said that for those who use wheelchairs, the chair actually feels like an extension of their personhood and it is very invasive when someone is the bubble of the chair AND the person. I can relate! My bike represents my personhood and freedom.

Person A proceeded to discuss how this would be a perfect bike for John and the assumptions ensued. I need to pause and explain my emotional response…typically, my husband will say, that I become defensive related to people responding with, “that looks like fun,” or the ever-present insinuation that an elderly person would have a much easier time on a recumbent like mine than on a standard two wheel bike. Occasionally, my husband will whisper something irreverent under his breath at the third (or seventeenth) comment, just to shock and humor me.

The truth is, my bike is magic, incredibly life-giving AND is damn hard work. All your momentum must come from your legs and core, without the leverage to stand up on the hills. It is not, a quick and easy ride. It would be very, difficult for anyone to just “hop on and have fun!”

I think my “frustration” in those moments, is that I want to be truthful and advocating and I never l want to assume about anyone’s experience. My experience with my bike has been interesting in terms of commentary and assumption. From, “you look very awkward riding that bike,” to “that looks like so much fun,” to “that is so badass,” to “oh, look at you, laying down on the job!” there are so many reactions. The generous assumption is that most people don’t intend to be insulting – most! Some do… and…the comments can be. I absolutely experience both.

How often do we experience that in other parts of life, that someone comments and our filter responds before our head and heart remind us to “assume the best about people around us?” It is SO hard to do….so hard. One of my favorite anonymous quotes says, “be kind for everyone is fighting some kind of battle.” I pray that today, you encounter kindness from yourself and from others. I pray that we can approach one another with the generous assumption that we are ALL trying our very best. And I pray that you experience freedom, awe and wonder in a way that only can be described as the presence of the Holy Spirt: sailing on a boat, swaying in a hammock hammock, sitting near the water, a hard run, riding horseback or like me, in a way that is different than others, but is your own passion and joy. I will be on my bike, because God is good to me….

Two golf carts…two very different experiences.

/0 Comments/in /by

(For my EGM)

Spending time with my darling daughter is like getting my cup filled up over and over when it has been significantly hard to find a drink for weeks. 

One of our favorite activities together is to go to local craft fairs. We love the creative endeavors, finding so many ideas for her endlessly crafty brain and for me, just absorbing every word she says. We talk, shop, laugh, see things that catch our eyes or give meaning to us both. We notice, connect and sometimes are moved deeply just in our wanderings. 

It is a daunting and humbling thing to be a mama of one who is on the cusp of spreading her own wings… she is closer to adulthood than she isn’t, she is becoming so much of her own and it is all too easy to wonder if I have done enough, taught her enough, parented well enough or many other “have I enough‘s.” 

I have done so much of my work over the course of her life, both intentionally and unintentionally. When you’re a therapist it’s always a good practice to continue to stay in touch with a therapist of your own. More often, there are conversations about parenting wrapped up in conversations about how I provide therapy, my fears and growth; the regular ebb and flow of doing my emotional and spiritual work. But even with the knowledge that I have done and will continue to do my own work as she grows, it is still alarmingly easy to fall back into those, “ I wonders.”

I’m completely amazed that my girl’s love language is quality time with me. I am beyond blessed in the relationship I have with her, but today I am simply humbled in the fact that who she is becoming is more and more like Jesus.

Upon arriving at the craft show, she rolled down her window and asked where the handicapped accessible parking lot was. We were instructed to go a different direction than the designated lot because it was full. She deftly drove and parked which by itself is still unbelievable to me. I swear she’s a three-year-old behind the wheel of a car. 

As always, she came around the side of the car to hold my hand while we walk. I don’t always need that, but I’ll tell you it’s the most comforting thing, her holding my hand; especially when the ground is uneven, there is changing terrain or pavement. She regularly tells me that she WANTS to hold my hand; it’s not a necessity but at this point in my life, I actually believe her. 

We walk, my hand tucked through her elbow and my heart is light. I’m comfortable in my own skin, which she IS watching. We are giggling a bit and I can sense a motorized vehicle behind me, slowing down. I look to my left and assume that a nice staff member has seen us and is going to offer us a ride to the front of the craft show in his golf cart. Instead, a gentleman in a STAFF shirt rather gruffly leans over to us and says “Ladies, that is not where customers are supposed to park. I can see you’re kind of slow so it’s OK, but normally you need to park in a different area.” 

I blink, my heart racing. He had just summed up my identity in a snap judgement. He didn’t say “I can see you walking slow,” but that I WAS SLOW. …my brain had often filled in the rest- that slow was bad, that I WAS BAD. Years of experience, disdainful looks, pity and assumptions had wrongly confirmed it. That same feeling coursed through my muscles, making them all fire.

I can feel my daughter’s body also tense beside me… and before I can respond, she is the one saying, “when we pulled in, we asked the parking attendant where to park and she directed us over here because the handicapped lot was full.” Defending our parking spot AND her mama.  

“We’ll, I don’t know about that. I mean, I would beat you in a race but next time park in the other spot.” He drove off and I stood there holding onto her, dumbfounded. 

In my lifetime I have often been confronted with people’s ignorance and lack of awareness but it really never gets easier. Your skin gets harder, you learn some quick comebacks, but the affects still hurt every time.  This particular time completely caught me off guard. 

Before we go one step further, I have heard so many times, “who cares what he thinks,” and it is right- who DOES care?

WE ALL DO. We ALL CARE more about the insults and criticism than we’re able to accept affirmation and love. If we’re honest…

Emotional work does pay off. I took a few deep breaths, was as kind to my reacting muscles as I could possibly be and attempted to find pity for golf-cart man.

Daughter handled her frustration and own anxiety by reassuring me. “We can leave if you want.” She whispered, hugging me. Trying to swallow around the lump in my throat and a few tears caught in my ducts, I needed another second to breathe.  In my adult self, but not my previously bullied kid self, he had called out my biggest insecurity and insulted me when I least expected it.

I reassured her I would be OK; I just wasn’t quite yet. There would’ve been piles of shame in the past and believe me, that voice was whispering, but a bigger yell was happening inside me, that this was unjust, and so very sad that someone would not only think this way but say it out loud to another person in the year 2022. 

I hugged her and reminded her it wasn’t her job to take care of me, but thank you. It meant the world, her love. I didn’t even reprimand her when she ever-so-subtly shook her middle finger at his back.

“Oh Kevin, thank you so much for all the help, you are so kind.” We were collecting ourselves and heard “golf-cart man” being praised by another customer. A bit of insult to injury.

We walked on and had a really good time looking in the craft show. Rich fall colors, scents from candles and food trucks, eye-catching artwork and sparkling jewelry.  Though we were initially subdued, we began to shake the interaction off and return to “us.”  Conversation included processing how “golf-cart man” and his comments felt for both of us, how others might feel and what would lead someone to say something so blatant and rude. We talked about her first few days of school, her favorite social media accounts and her upcoming year.  We vacillated between the sad, mad, silly and fun. And a few swear words. 

We bought sweet treasures for friends, a few keepsakes of our own and gorged ourselves on iced tea and strawberry shortcake mini donuts from a fantastic food truck. I loved listening to her dreaming her dreams, future plans, the inspiration she found for crafts she wanted to make and how God holds her future in his hands. I cherished her hold on my arm and every once in a while whispering, “I’m sorry he was such a jerk, Mama.“

We left and before I knew it, she was again rolling her window down and trying to explain to event organizers what had happened and caring for her mama. The best part was watching her use her voice and standing up for what she believed in. (Passionately calling golf-cart man an asshole.) I was just the lucky recipient of her strength. Even though this man’s words hurt us both, we hurt for others who he might speak to in the same way and honestly, we were just plain pissed off. 

But I also experienced the beauty and the pride of my daughter’s awareness, her choices to use her voice, her heart and knowing that SHE changes the world for good. She loves like Jesus; she has a heart like Jesus and I am in awe of her trust – in both herself and her Savior.

I don’t know that I will ever feel confident that I have done right by her completely. Honesty again? Every parent this side of heaven wonders, I think. But today in the middle of some glaring ignorance I know that I am enough, I have enough and God is more than enough to take care of all of HER needs as well. Amazing how a craft show can give you things so good (and some hard) that has nothing to with crafts.

As the day ended, we came across a vendor who created lovely jewelry as part of a fundraiser for people in Haiti. Ella bought a Haitian coin with the words “Grace Wins “and me, a bracelet with the words ‘rise.”

Messages and reminders for today and those to come.  

Six months AFTER that day with Kevin, (golf cart man) I still think about that event sometimes….

I attend countless events for our kids and my brain is ultra-aware of people around me.

I have become accustomed to looks or experiences when I must advocate or explain my disability to others to get the help I need. I also am surrounded by lots of friends, family and our “swim family,” (the other parents we sit and cheer with, week after week, sport after sport,) who are spot on: reaching for my hand, helping me down the steps, bleachers, or many other situations. I am profoundly grateful.

As often as there is someone who is hurtful or unaware, there are many more in my corner….

Last Thursday was one of those days….

My love and I traveled about an hour to our son’s away baseball game, as usual. It had been a long week, my muscles still a bit off following lots of temperature changes, long days with clients (sitting too much) and many days in a row of events for the kids. No complaints, just this season we are in.

My husband parked the car and we could not even really see the baseball field clearly. It was and felt so far away, especially with my current state of mobility.

I could feel my heart begin to race, thinking about walking out that far. Still, there wasn’t really another option. I got out of the car, begin to pull my coat on as the chill was already in the air.

Just then, a man drove a bit past our parked car in a John Deere Gator. The very fleeting thought was, “oh, man, I wish we could hop a ride!”

Still, I continued pulling myself together to both walk a long way AND sit outside in the cold for a long baseball game.

I looked over again, sensing that the man on the Gator was still there…

“Hi there, would you like a ride? You’ll have to sit in the back…” He looked from me to my husband.

I blinked and my husband quickly answered, “I don’t mind sitting in the back, thank you!” We tried to grab our stuff quickly and though my muscles fired from being on the spot, I climbed up in the seat next to him. He had leather looking skin from years in the sun, a deep gravelly voice and the smell of cigarette smoke clung to him like a cloud. And…his kindness meant the world as he accelerated across the grass, gravel and field toward the immaculate high school baseball diamond.

 I asked his name, (Terry) and he explained that he worked at this particular school taking care of the various sport venues. I praised his efforts, thanked him again and had a lump in my throat as he pulled the Gator to a stop at the ball diamond where my son’s team and the home team were already beginning play. He could not have known how helpful he was, what it meant to me or how grateful I was.

As we sat watching the game in a truly stunning stadium, I felt the very love of God in Terry’s kind gesture. And as the game went on, I could also feel my anxiety building as I thought to getting back to our car. I tried hard to push my worry to the back of my head, but I’d be lying if I said it didn’t nag at me as the game wore on.

Suddenly, the game was over and my husband and I again began packing our chairs, gathering our belongings. I was resigned to walking back, made a wise crack to my husband about getting back to the car at midnight to ease my own anxiety.

Another baseball parent we know well came and hugged us, then looked over.

“Stace, I think your chauffeur is here, looking for you.” We followed her eyes and there was Terry, pointing right at me.

My heart pounded for just a second at being cared for and seen. The negative stuff happens often enough that you just don’t expect THIS kind of kindness.

We quickly made our way to Terry and he smiled at me as he revved up the Gator. “Well, I was watching the game and I kind of kept track of you so that I could give you a ride back.” I swear, I could have shed tears…

”My wife has some issues with her knees, so I like to help whenever I can.” He told me as he pulled up by our vehicle. I was still a bit blown away. I thanked him again and in reality, might’ve hugged him if I thought I could get away with it. I didn’t, but instead climbed into our car with a ridiculous amount of gratitude and a sense of God’s timing and presence.

No disrespect to our kids’ team, but Terry and his kindness have been a big topic of discussion throughout the weekend. It was my husband who said, “crazy, huh? Two guys, two golf carts.”

These words hung with my heart, a lot of the weekend…both Kevin AND Terry.

It wasn’t lost on me that Terry’s giving attitude changed the sting of Kevin’s behavior as I thought about that event again, many months later…

Terry, if you happen to come across this, thank you for showing me Jesus in a person, driving a Gator. Please don’t stop helping, because it is so important. I loved that ride for a lot of reasons and your ball diamond is STUNNING. Your ball diamond and your heart….

 In a world where we all have the choice to be “Kevin or Terry,” may we all be like Terry…and say a few prayers for the Kevins. We all have that capacity, don’t we?

Thank goodness for grace, mercy and people like my girl and Terry. I am grateful to both.

“Be kind for everyone you meet is fighting some kind of battle.”  Plato

Both…And

Psalm 13