Tag Archive for: cerebral palsy
World Cerebral Palsy Day, 2024
I find myself in a strange, yet lovely and new spot as I age. I am far more accepting of myself, the roles that I am called to, the ways these change like the tide and the ways they are beautifully and achingly the same. My role as “mom,” is ever-changing as my kids also age. With my oldest in college this year, my 17 year old son on the very brink of adulthood and my 13 year old daughter changing before my eyes, I would be remiss if I didn’t take an honest look at how I am changing as well…
They don’t need me the same ways they always have; they need me in different ways now. (By the way, THIS change is also wrought with both/and, the grief of changing family dynamics and the exhilarating moments of growth.)
Yes, I MUST acknowledge both/and as our family shifts a bit…otherwise, I forfeit the beauty and right-ness of God’s plans for all of our lives, rather than becoming bitter, fearful and sad at all the independence and therefore, change, that plays out in every moment of every day in our family.
There are other changes too…
I have been working for two full years with EMDR International (EMDRIA) to become a certified EMDR clinician, which will reach completion this week. Just as quickly, I will begin the process of becoming an approved consultant with this ground-breaking organization. As I look at the next chapter of this career I love dearly, I am focused on bringing continued perspective and growth to brave clients as well as assisting other therapists who also care deeply about complex trauma and the healing work of EMDR.
I am a part The Fred Rogers Educator’s Neighborhood for the next year as well. I am very honored to have been accepted by Fred Rogers Institute for this year long study. Along with a group of others who have been impacted by Mr. Rogers, we are together learning how to utilize Mr. Rogers’ wealth of knowledge, study and perspective in many areas of child, family and professional development. Though we have met only twice, I am so thankful to rub shoulders with others in the world who genuinely believe, like Mr. Rogers, that kindness really does change us all. And heavens, don’t we all need more kindness in the world?
As there always is in life, there are difficult adjustments too: this week, two significant deaths in our world. Though I specialize in grief and loss, it is still very personal when it happens to you or in your very personal corner of the world. Losses bring us to the opportunity (I say this so gently,) to look back, to grieve again or in new ways and to use losses to inform how we want to LIVE going forward.
There are new and enduring friendships, growth in so many areas as we have recently come home, again to the church that played such an important part of my life from age 14 – 24. God has stretched, challenged and blessed our family in profound ways in the process of leaving our former church, grief like I have never known in that process and the faithfulness of finding a new church community. It is both the biggest blessing to be cared for, to be vulnerable and to love and care for others in this new and not new church home.
Finally, there is the both/and as World Cerebral Palsy Day was observed on October 6, 2024.
It is a heart-wrenching thing, this part of my identity that I so wish wasn’t AND after many years of grappling with what it means for and about me, to find pride, hope and love for myself and fellow CP warriors. It is so holy to see, validate and celebrate the bad-ass-ness (I made that up, can you tell?) that comes with living with and caring for those with this disability. This week, a friend finally got to bring her son (who has CP) home from at least a month’s stay in the hospital for complications with seizures and other physical issues. I am stunned by her son’s (and her own) positive attitude after so much. For as much shame as I have carried and overcome in my lifetime around my own diagnosis with CP, it is gift to be able to smile and be proud on World CP Day.
Here’s the thing…God is not, will not and has never been surprised at the ways he created us, the things we do need to go manage here, apart from heaven and how we are limited in our humanity in the midst of these things. He IS with us, even if it feels like he absolutely IS NOT. Deuteronomy 31:8 says, ” The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.”
Ohhhh, that’s such a hard one, isn’t it? We are so human in that feeling that says, “why does God put me through this? He COULD change _________________…..”
I hear it multiple times a day and my own reaction is understanding the question AND compassion. What I hear in that phrase, I immediately think, “oh, he is NOT, putting you through it; he is holding you, as he himself hurts that this is happening too.”
I do not understand all the mystery that surrounds the what’s, how’s and whys that surround God and his sovereignty. I have been there too, crying in rage, frustration and desperation. I have also come to a place where there is more peace in releasing the whys to God’s care and fully trusting him anyway…
I suppose that is how, after many years, many feelings, many experiences and many prayers, I can joyfully put on my green World CP day t-shirt, raise a “cheers,” to my fellow bad-asses, and hold space for that rather than the negative.
I am curious, how are you experiencing change in this season? Maybe we can hold each up, give more care to ourselves and others and float on these crazy waves of change rather than fight them…
God, who is in it all, through it all and who holds it all together: Thank you for understanding our limits, frustration and even anger when things aren’t changing for the good. Thank you being near, always. May we seek your understanding, your heart and greater trust in your love and goodness. May we see ourselves and each other with your vision, compassion and desire for whole-ness. May we know love and joy as only you can give.
xoxo
Both/And
Deuteronomy 31:8
So much light, holiness, color and wonder….
Washington Highlights (part 5)
I did not intend to write this much detail about our trip; honestly, I feel a bit self-indulgent. To write and share at least 5 parts, I wonder if people really want to hear about the details or if this is just another authentic part of the blog, vacation memories for the last few weeks, another topic another time. I wonder if I can possibly convey it well enough because, well…our trip just was, magical. (and it WAS NOT my beloved Disney this time, if you can believe it… 🙂
Our third day in the city found us on the now familiar Metro. I will readily admit that my parents led the charge in becoming familiar with both the Metro and the public bus system. They are braver and more familiar with this in their 70’s after a few trips to England than hubby and I will ever be, probably. It was our first time using the Metro and I was immensely thankful for their adventurous spirit and ease in “just finding our way.”
This time, we’d all decided to go see the National Cathedral, something that we and the kids had only seen on TV. I am also always curious about old church buildings for many reasons, so this was a natural draw. We got a little turned around in terms of getting there, but as always, my family was so supportive and tough. After an almost 2 mile walk (or roll for me) from the Metro stop, we arrived at the National Cathedral. We had wandered past beautiful homes, landscape and overall scenery on the walk, but staring at the cathedral itself felt somewhat ethereal.
The official name of Washington National Cathedral is the Cathedral Church of Saint Peter and Saint Paul. We stood gaping at the towering columns, sharp, steep spires and steeples; a mix textures, including stone, shimmering glass of every color, windows of many shapes and sizes. There is an actual Darth Vader head hidden up there, no joke!
The bubbling sounds of a fountain mixed with the awe we were experiencing even before we set foot through the massive, dark wooden doors. We wandered into a courtyard, the fountain whimsical to our sweet youngest who exudes her own whimsy, always. I have said it many times, but I had a hard time taking it all it all in. I felt like I couldn’t find any words, which for me, is quite a thing….
We entered through the solid doors and were instantly awash with colors, all around. The whole rainbow rested everywhere, our faces, clothing, the floor and the many pews in front of us, the instant we arrived. We must have looked a bit overwhelmed, even in all the color. A docent walked swiftly to our group of 7, encouraging us to join the guided tour just a few feet away.
Another knowledgeable and joyful docent was explaining the details of his beloved cathedral with the warmest of smiles and eyes. He was telling of the many chapels within the cathedral (9 total!), years of history, intentionality and how everything leads back to the Word, God’s love and Jesus’s sacrifice. To really explain it all would take days on my blog….so a few photo highlights and thoughts will have to suffice until you go experience it firsthand. (YES, GO! You will NOT be sorry!) Before our trip, my understanding was limited to “the church the presidents go to before inauguration and where they hold state funerals” and that was all. Now, having stood in the middle of this holy, beautiful ground, I am infinitely more curious about the life of the cathedral, more of Jesus and how this place points back to him, always.
As we ventured through the cathedral, we were privileged enough to see the places where Abraham Lincoln, Helen, Keller, and and Anne Sullivan have been interred, amongst many others. It was holy ground indeed.
The docent showed us this beautiful pulpit where, during many state funerals, memorials, tributes, and eulogies have been delivered, as well as very famous sermons. I had chills when he recalled Martin Luther King, standing in this very pulpit the day before he was killed.
As always, all good things come to an end. After listening to an impromptu organ concert for a few minutes, it was time for us to go. On the way out, we stopped by a very unique fundraiser for the Cathedral, a Lego brick building of the cathedral itself. You could make a donation and add a few bricks. it was incredible! My Lego loving boy was thrilled.
In the book Jewels of Light, the Stained Glass of the Washington National Cathedral, Elody R Crimi writes, “a blend of visual and emotional sensations are integral to the experience of stained glass.” Rowan LeCompote, the cathedrals for most stained glass artist, compares glass to music.” Like music, stained glass, can stimulate the imagination, it can lift the heart, it can enchant.”
When I was growing up, the church I attended had rows of Stained Glass windows along each side of the church. I used to look at them, taking in the colors, artistry and beauty for the whole church service. Sometimes, I was concentrating more on the details in those windows than I was concentrating on our pastor and his preaching. I was indeed enchanted by them, and I hadn’t remembered that until a bit later on our trip. The enchantment with these is next level. They each tell vivid, detailed, both heartbreaking and redeeming stories. They combined the values of Christ and the history of our country to bind present and future together with the backdrop of the stunning cathedral.
The cathedral was a gift of artistry, architecture, wonder, and pure holiness. I had no idea that that trip to the Cathedral would become one of my very favorite memories of our time together. I breathed gratitude, awe, pleading for many we love and awareness of the God-breathed gifts.
And again – the reminders that God is everywhere and saturates everything.
Thankful, prayerful and hopeful.
Both/and
Xoxo
Job 22:12
The White House and Ford’s Theater: both saturated in history, color and dedication.
Washington DC highlights, (Part 4).
If you’ve been to DC, you know what I’m talking about when I say the city itself could be a study in saturation. From the people, sounds, colors and everything in and outside – Washington for us was a week full of blessing, rich pictures of God’s delight, sovereignty and presence.
The next stop on our tour of tours brought us back to the White House, this time in the daylight! My Mom and Dad had done some incredible legwork securing tours of the Capitol and White House through our Congressman’s office and we were all blessed. It was a gift to have these opportunities and it did not go unnoticed.
Though we took a small detour through the White House visitor’s center, we did indeed find our way to the real visitors entrance at the actual White House. The path IN and security required was nothing short of a very well -oiled machine. Each member of the secret service who checked our credentials could not have been more respectful. I sat in my wheelchair, waiting for the uncomfortable looks, or looking away, or talking to me like I am a child that sometimes happens. It is a real thing when I am in the chair. It did not happen this time, for which I was very grateful.
When we eventually made our way through multiple security checkpoints and walked through the doors to the White House, I could hardly take it all in; part museum, part office and partly home to the Biden’s, currently. We slowly wandered through the East Colonnade, gazing at framed pictures of various First Families throughout our nations’ history, including their beloved pets. To our happy surprise, a week after returned from DC, one of the questions on Jeopardy was about a pet racoon who had lived in the White House and we knew the right answer, because of our visit! (See photo below!)
We were a tad bit jealous of the presidential movie theater, imagining our own many movie nights. There were beautiful sculptures, paintings and gifts given to various family members. It was surreal to move through the hallways, seeing sights from movies and tv, as we moved along the long hallway. I gazed out the window, reminded of TV shows that have used the White House as a central character, how we all are fascinated by the mystery of power and elegance here. (Any Scandal fans?)
We moved on, seeing historic rooms, furniture, dishes and so much more. As my husband pushed me slowly along the hallways, I made eye-contact with another dad who was pushing his son in a red stroller/wheelchair. His smile and dedication to his boy, (who I instantly recognized as another CP warrior,) was sweet and tender. As we approached a room filled with books, Matt and I joked about going to put a copy of the The Forgotten Five by my friend Lisa McMann on the table where about 30 other books were displayed. (The Secret Service may not have been so respectful if we actually tried this! You’ll just have to go buy one to read, well worth it, I promise!)
I put my hands on the wheels to slow down and motioned the dad and his precious boy ahead of us. The dad gave me a wink and a silent, thank you and it was another sweet, “CP warriors unite” moments. I had seen quite a few warriors on the trip, something not lost on me at all. 1 in 350 people are diagnosed with cerebral palsy. It is a truly rare incidence for me to run into anyone with CP, let alone a few in the same space. The night before on our dusk tour, I had seen another tour guide with CP, as well as Dre.
We came to the end of the hallway, finding a marble staircase, which others in the tour began climbing to the second floor. Before we had a chance to ask where an elevator was, one of the many people who took such pride in their roles here, motioned us his direction. We waited while he walked the man and his son behind a set of screens behind him. Another man came down the stairs and encouraged us to follow him, asking us to refrain from taking photos while we followed him to the elevator. He explained some of the history of the White House, as the location of the elevator is not in a “public” part of the White House. We were able to see a few behind the scenes portions of the White House including one of the beautiful kitchens, where we were given a smile and exuberant “Hello!” in French from one of the chefs as well as some of the original stonework from the White House at the time of the first fire in 1814.
Once we got off the elevator, we walked into the “Red Room,” beautiful lush wallpaper and many historical antiques, centuries old and in beautiful condition. The “Green Room” was similar, gorgeous in color, pristine architecture and antiques. We next went into a ballroom, a formal dining room, then came out into a long hallway that displayed many portraits of former Presidents and First Ladies.
As long as I can remember, I have been fascinated by the Presidents. We had gone to Cape Canaveral and Boston when I was young, both of which awakened my interest in President John F. Kennedy. I know there are many rumors about his life and sad realities related to JFK’s death, but in my youth, his charisma, youth and tragic death had always made me want to learn more about him and his seemingly fairy-tale family. As we made our way down the hallway, we came to the portrait I’ve looked at so many times.
To see all the history, the rich tapestry of tradition, belief, hard work and trust in God was an unforgettable experience. I was so thankful to share it with the kids, my parents and other fellow visitors. (Americans and those from other nations.)
All too soon, our time at the White House was coming to a close. My husband and I waited to get our picture under the Presidential Seal, the same one we’ve seen in countless press conferences and speeches. As we left the elegant, gleaming furniture and priceless works of art, I thought about how quickly time passes…all that these walls have experienced, lost, rebuilt, changed and changed again. I thought about the time in our family, how quickly are kids are growing and how much we too have experienced.
And then…how absolute and unchangeable God is. All the ideals our country began with, trusting God was at the forefront. While much has changed, God has not. HE is the holy of holies, the beginning and the end. While His Word tells that the “flowers wither and grass fades,” (and all other things,) “the word of the Lord lives forever.” (Isaiah 40:8). As much as this city and our country honor tradition and history, unless it is all built on the truth of God, this too, will fade. My brain has been reflecting so much on all the things we’ve taught, built and put our absolute faith in.
Our next visit was to The Ford’s Theater and the Petersen House, where President Lincoln died. It was a somber visit, almost as though you could still feel the heaviness of the President’s death. We all crammed into a re-created version of the bedroom where President Lincoln fought for life. Again, I was struck with the reality of change that can happen in an instant, to individual families of entire nations; or anything in between.
The National Park ranger stationed at the Petersen House took great care in telling about the events of history in the most authentic and honoring way. I wondered how much that becomes a part of you if your job is to share the details of such an important time in history. It was clear, the level of pride and honor it was, with the ranger we spoke with. She talked with great reverence about President Lincoln, his impact and his tragic death. It was a personable re-counting, gratitude for our president’s sacrifice and pride in her own post here. We left feeling like we had personally come to know the President and his life a bit more than what we’ve read.
From the painstaking reconstruction of the bedroom where the president fought for his life, the detailed museum filled with endless details about the President, his family and his presidency, and the honor throughout, we were completely saturated by it all. At The White House, history, color, details and meticulous care ; we were in awe. And the dedication given to it all was a beautiful representation of sacrifice on many levels.
I am grateful for every good and perfect gift, the skills and gifts of those who live and work in our Capitol, striving for the best of our country and her people. (Yes, I choose to believe this is the best hope of most who work in the political arena…)
I am grateful for the architects, builders, dreamers and the many others who’ve built, designed and created and so much in Washington and around the world. Isn’t there so much to see, every where we go? I am amazed, by it all.
I am grateful for the opportunities and freedoms that we take for granted here in United States. These days in DC reminded and encouraged me to appreciate it all, every single day.
Most, I am thankful for the sovereignty, hope and reason to trust in the Lord Jesus Christ. Because of him, I (we) truly have nothing to fear.
Both/And
Isaiah 40:8
Xoxo
October 16 or “someday.”
Have you ever had a someday? What I mean is, have you ever said to yourself, “someday, I will be ready for that role. Someday, I will pursue that dream or be prepared enough to take on that challenge. Someday, my _______ will be right, and then I will be happy. Someday, when I meet______ I will be happy (or get into the right college, live in the right city, etc.)” Can you relate?
October 16 is the realization of my own “someday,” one that continues to become more and more a part of my present and my future, but realized, because of my past. It is both the continued work of my own and that of helping others with theirs. And it is a visible portion of my path that feels like it has been influenced by so many: family, friends, mentors, pastors, professors, friends, therapists and in a very real and tangible way, the stories from clients and their very bravery that has influenced my path to someday most of all.
There were many, many poignant moments in my relationship with Jesus, but the path, the day Jesus whispered to me in Graves Hall, the first day in a social work class with Dr. Jim Piers, that THIS was his plan for me. I wasn’t at all sure what it meant, but I knew HE led me to THIS. I graduated from Hope with my B.A. in social work, ready (and not ready) to care for others, one of the very few things that felt natural to me. I applied a few different jobs, but it was the one in a grassroots relational ministry with teens that changed me for good. In the seven years of ministry, I had co-workers who taught me more than I had learned in some classes, met many unforgettable families, brave students and learned about trauma in ways that only God could understand and redeem.
I had, at the encouragement of a dear friend, applied to graduate school in the Spring, 2000. I was shocked when I received a quick acceptance, having struggled for as long as I could remember with my own value and confidence. Another dear friend was killed the week after I began, putting me on a path of learning so much about grief, trauma and perseverance.
The 9/11 attacks on the World Trade Center happened almost one year later, the same day I began my first internship at our local Hospice organization. Our small and mighty teen ministry suffered the same as many non-profits that year. Our fearless fund – raiser, Prett, believed with 100% of his being, what our ministry was doing: loving and supporting kids in this community in the name of Jesus. But with the state of the world in 2001 and Prett’s declining health, God began to bring the season of ministry in my life to a close. And as much as I could not understand it then, the path led to a deep love and respect for counseling, (that I didn’t know yet) a life-changing supervisor and further experiences with such beautiful patients that it still touches my heart.
Then there was a plan for a 2nd internship that somehow seemed to be what I wanted, what I said I wanted, but did not FEEL right. 3 weeks before I was to begin, our little ministry closed for good. I needed a part-time job in which to survive while I finished this last year of grad school. I got a call from a friend, saying that her supervisor in a local counseling center wanted to interview me…
As only God could, my life changed in that one afternoon, a whole different path, one that had been whispering so quietly that I hadn’t even been aware of it. I began that fall with an internship and a JOB in that counseling center, scared, fulfilled and RIGHT. I had informed the first placement of the sudden change. As I turned toward this counseling path, I knew God was indeed, behind, beside and before me. I knew both that HE was leading, even though my confidence suffered a deep wounds from another professional who made me an impending job offer, then denied the promises of “hiring me when I finished grad school,” as graduation loomed. The mixed messages from a respected person in the counseling field sent me reeling into self doubt and insecurity.
God paved and redeemed my path with supervisors who helped me re-learn trust myself clinically, co-workers who became the dearest of friends, skills that I still, many years later, still rely on daily. I met my husband that year, and two months after my graduation, I married him – the easiest yes I’ve ever said. At that, I began marriage AND a counseling career, a life that felt nearly too good to be true. I loved who I was becoming as a clinician and I stayed there for the next 8 years, during the birth of our first daughter, and close to giving birth to our son. I had worked primarily with court-ordered clients, some of the hardest work I’ve ever done. I learned some unhealthy patterns, witnessed those who were unaware and unhealthy as well.
I had logged all my hours for licensure, passed my test and was finally hoping to see clients who came by choice. It was a long wait. I was tired, very pregnant and ready to spend time with our precious kids. I was home with our 2 year old and infant, happily enjoying motherhood when my dear supervisor from Hospice called. I went back for the next 3 1/2 years, until I came pregnant with our youngest daughter. I was again home with our babes, happier than ever. Our oldest went to kindergarten that year and the time I was home with them was worth EVERYTHING to me.
And yet, that deep desire, the deep longing to help and counsel remained an ember for me….
Over the summer of 2013, I encountered an acquaintance who was suddenly thrust into grief and tragedy. I heard God so gently remind me to return to counseling, to help and trust. I just needed a place…
I returned to the same organization and spent the next two years growing, through both positive and negative experiences, again, cultivating my skills as a therapist. I had been doing my own work for the last few years, a firm believer that a therapist can only go with clients as far as their able to become aware of themselves. And as I sat in her office one day, we talked about “my someday – my hope and desire to be in private practice.” She gently asked, “when is that?”
“I need to know more,” I said, not really knowing what that meant.
Over the next few weeks and months, she asked gentle, yet pointed questions about “someday,” and helped me understand that someday could be now. I had so many questions, hopes and wonder. Could I, really?
And then, on October 16, 2015, I welcomed my first client in my private practice. It was the most wonderful, natural moment for me, the someday that was indeed, now.
8 years later, I am humbled, blessed and have learned more from clients than I believe I teach them. I am grateful for this career with each and every hour that I spend, hearing stories, difficult and heart-wrenching tragedy, trauma and the joy of growth and change.
“I know the plans I have for you,” declares the Lord, “plans to prosper you and not harm you; plans for hope and a future.” Jerimiah 29:11
Thank you, my Jesus, for knowing every single step of my and all of our pathways. Thank you for never giving up. I would not be anywhere without you or your sovereignty. Your truth and provision, the fact that NOTHING is random to you. Your intentionality, all – giving for our good.
Thank you to clients and those who have trusted me with your precious truths – referring friends and loved ones so that I may witness so many journeys. I am nothing but thankful and pray that this someday is now for many years to come.
Both/And
Jeremiah 29:11
xoxo
Startle reflex, PSA’s and awareness.
“Jeez, Stacy, you are uptight!”
“Nervous much?”
Laughter ensued from my friends. I was thankful that the movie theater we sat in was dark and they could not see my quickly heated, tomato red cheeks. Even though I knew in THEIR minds, this was “just teasing,” I HATED how my body was “tense and jumpy” when there was a loud bang, scream, crash or any other surprise reason that my body would startle. I HATED IT…the lack of control I felt, how my body seemed so much more reactive than ANYONE else I knew and how in high school, this became such a point of teasing, so much more than I had experienced in middle and elementary school.
I began to feel immense shame and embarrassment about a part of myself that I did not know at all was a normal part of having cerebral palsy. I was hard on myself for not managing the “jumping,” reactivity, hard on myself when friends began to startle me on purpose because I couldn’t just “have fun with it.” It hurt. Beyond that, however, I just didn’t understand my own body mechanics that were so out of my control.
I don’t think I knew how to even talk about that, the embarrassment at people’s comments, how I would hope that movies did not have jump scares, or the tension I felt when music indicated something was coming. I don’t think I asked my parents how to help because I just wanted it to all go away and assumed it was just a “me thing.”
I have said many times over the course of my life, that I just did not SEE others like me. Cerebral palsy affects more than 17,000,000 people world wide, is the most common lifelong disability and no two people with cerebral palsy are alike. (From the Cerebral Palsy Foundation). For these and many other reasons, it is exceedingly difficult to process and understand the unique challenges that each of us with CP face, individually and collectively. Another contributing factor to that complexity is the reality that as kids with cerebral palsy age, services and support are less and it is even harder find connection to others who are similar. My physiatrist (Dr. Rush, Grand River Rehab) told me this week that he normally refers adults with CP out of state for orthopedic work, such as knee or hip replacement because of the innovations being done in places other than here. I don’t say that to throw shade at Michigan, but rather, it is a statement on the lack of resources and connections here, in my home state as an adult.
I have been allowed an incredible journey of awareness, understanding and self acceptance. Therapy, a support system like none other and first and foremost, a path that I can see was nothing less than God’s presence and provision have all provided some chosen, some mandated processing and accepting both my own worth and limitations. As I have aged and social media has emerged and evolved, I have experienced many people who bravely share themselves, challenges and their victories through various accounts and stories. Especially in the last few years, I sense understanding and comradery as my feeds include more and more brave CP warriors.
There is Colbie, whose friends and family regularly celebrates her strength and achievements, defying expectations. There is sweet Peter, who consistently defies the odds, smiles and communicates though he is non-verbal. There is Stephanie, an authentic woman, fitness professional, and advocate. She regularly discusses her needs, her frustrations and even depression related to CP, as well as her tremendous, spirit. Rachel is both fearless in sharing the realities of being an adult with cerebral palsy, unabashedly displaying the challenges and the normalcy she experiences, hourly. Joseph regularly shares his own fitness and life journey and again, the nuances of what it means to engage the world as a healthy person with CP. It was in watching a TiKToK of his, that I again had another a-ha moment: He described, “walking across the room carrying his cup of coffee with CP for the first time without spilling it. I have battled my own “sloppiness,” for years, thinking again, that it was only me, that could not carry my tea without spilling it on my shirt, the floor or both. It was bittersweet to watch Joseph because of the struggle AND the validation.
There are many others…this tribe of warriors, including their families. I would also include my own. Having lived with cerebral palsy for my half century of years, I am so proud. I am proud of us, those who did not ask for this set of circumstances and who show grit, “normalcy” and inclusion. I am amazed by rockstar support systems, and continually improving adaption options. I am thankful that though the world, globally, has a long way to go in regards to valuing ALL life and experience, we’ve also all come SO FAR.
Did you know that an athlete who was born with CP WON (yes, you read that right…) WON American Ninja Warrior this season? (Sorry for anyone that watches…I am just so excited that I added this spoiler in!) https://youtu.be/zb6rgRFI3Jg?si=MSWSsRmjnlE7AdrP
Justin Gallegos became the first ever professional athlete with cerebral palsy to sign with Nike in 2018. https://youtu.be/x4KC0nUmY4Y?si=bkLSvUEAhyfPju2K We have come so very far.
Yesterday, I was scrolling a bit while drinking my tea. The Cerebral Palsy Foundation regularly posts fantastic content that is informative for both those with and those without CP. But as I scrolled, my eyes fell on a graphic they’d posted just a few hours earlier that was another big moment for me. (See below).
It stunned me for a minute because though I have learned over time about my own startle reflex, that same one I took a lot of grief for in middle, high school and even currently sometimes, this was new to me. I know how to deflect it or give a quick comeback to whomever is teasing. But still, STILL…after all this time that I’ve lived with CP, I hadn’t thought about others’ startle reflex. Granted, I still don’t see “ALOT of OTHERS” with CP around me, but still…it hadn’t occurred to me. We ALL startle easily and have not control over it.
I felt newly informed as I scrolled, but more importantly, I felt so cared for, along with the other warriors around me. I felt advocated for as this graphic was informing US on a global scale, “be aware of people around you with CP AND, know that the STARTLE is a normal thing.” Absolutely, the most wonderful blessing!
There are many times that my “normal with CP” requires much thought and planning to do seemingly “normal” things that the average person without CP may not have to think twice about. One of the pools in our conference does not have railings to get up to the bleachers. It is impossible for me to make that climb solo without the rail. Other times, the parking lot, even handicapped spots are miles away from an entrance and even further from our actual destination at events. It is tiring sometimes to explain my particular challenges or needs and sometimes easier just to suck it up and manage a situation at a significant cost to my comfort or needs because honestly, I could be explaining things all. day. long. This got me thinking about how others might experience this as well….
My friend Aria told me recently how “people don’t always know how someone with kidney disease has to monitor their water intake.” In her words, “I couldn’t even freely drink water when I was I was thirsty during dialysis. Too much could really hurt or even potentially kill me. I couldn’t take showers without much physical and emotional exhaustion because I had to be so careful with my catheter. If I got it wet and water got in my bloodstream, it could have also been dangerous for me.” It is in her brave sharing that I value my ability to drink water, not take mundane things for granted, like showering. (Yes, I did share this story with a few teens I know who don’t always value of, ahem…TAKING a shower.)
I wonder…is there anything you would share about a particular battle that most people wouldn’t be aware of? I am so grateful for awareness and though there are difficulties with how we treat each other in the world sometimes, there is also so much that is good, possible and beautiful.
The graphic felt so holy to me and here is why: everyone you or I encounter is fighting some kind of battle. That is not a cliché,’ but instead, an absolute truth. The more we can become aware of each of each other, the more we value how God has created us each individually, the gifts and the challenges this side of heaven. I think we all want to be seen, represented and seek connection with people who get us. Look at this video. If this doesn’t prove how meaningful it is to see and experience someone we can relate to in our own joys and challenges, I am not sure what does. https://fb.watch/nxg7wgDlNn/?mibextid=v7YzmG
Yesterday was World CP day, October 6. I celebrate each and every warrior who lives with CP. If I had the ability, I would make a DAY to honor each and every struggle around the world. I am in awe of each, and every one of us, challenging, battling and victorious related to whatever our struggles are. And on this and every other day, may awareness, celebration and love lead the way to acceptance, value and seeing one another as God himself does: made in HIS magnificent image.
Both/And
Psalm 139
xoxo
Saturated…(part 1)
Though we had been planning for well over a year, our recent vacation to Washington DC snuck up on us because, well, September is September. Maybe it’s just me, but September seems to be right up there with May and December, the two busiest months of the year, at least in our house: purchasing school supplies, attending open houses, shopping for clothes, ordering athletic gear, learning new schedules, rediscovering school year routines and so much more. The summer wrapped up and fall began at freight-train speed.
3 weeks later, we blinked and realized our long-awaited and once rescheduled vacation to Washington DC was upon on us in a few short days! We all packed in a rush between informing school the kids would be gone, taking senior pictures, swim practices, meets and inevitable high school drama. In what felt like a discombobulated hurricane, we pulled out of our driveway at dawn, some of us with already nervous traveling stomachs, others a bit buzzed with an awaiting adventure and another nearly sleeping before we uttered traveling prayers and left our own street. We were armed with Whoppers, combos, Hydro flasks full of water, iced tea and kombucha; DVD’s for the ride, Air pods fully charged and audiobooks downloaded and ready.
The idea for the trip was from my parents, with my parents. Our kids ages made for the perfect time to soak up all kinds of American History in our country’s capital. I hadn’t been there since I was little and the rest of my crew? Never. I could feel my parents excitement as we caravanned through Michigan, then Ohio, stopping at a familiar antique mall because my mom has had a lifelong love of antiquing, which is both her hobby and business.
As I wandered with my oldest daughter, I felt like I was coming home – many antiques that had been in my childhood home, many more that whispered from my heritage. My grandparents, my mom and her sister all curated multiple business ventures and expertise about antiques. They each honed the ability to see great value in what someone else may have deemed, “used junk.”
I am a bit ashamed to admit it, I don’t always understand the love and skill my mom has in this area. I definitely do not enjoy the hunt involved with antiquing as mom does. But as we wandered this time, I found myself a bit awestruck by the history, the memories and joy in so many “vintage” items throughout the huge space. The kids found sweet treasures, a tiny windmill, various Mickey Mouse items, a Marvel character my daughter “HAD TO buy for brother,” a tiny Wade White House once included in boxes of Red Rose Tea. I felt like I was discovering something different while wandering this antique mall, finding comfort in the smells, beauty in so many colors of china and the sight of an old suitcase just like the one my Grandma carried when she came to visit.
As it turns out, that feeling on this first stop on our journey would be recurring many times over during our weeks vacation, not necessarily with antiques but rather the slow, deliberate pace, the saturation of small, bright and beautiful details that so often get overlooked and the pure joy of just being. While I intended to write about our travels while on vacation, I was so busy being present that I never found the right moments.
A day or two after we got home, I was listening to a daily Bible reading app when I heard the host say, “We know God is everywhere, but he can certainly turn up the saturation when he wants to.” -Tara Leigh Coble, The Bible Recap.
YES!! Like many of the ideas I write about, I listened to that quote over and over, turning it over in my mind like my trusty Rubik’s cube. When I thought about the word, “saturated,” I immediately thought about my kid’s wet towels on the pool deck or how my youngest likes to run through the rain, fully clothed. I thought about color, how my friends John and Jeannine load the color onto screens when creating t-shirts. But I felt like there must be a bigger definition, especially when I think about this quote.
“Saturation is the process or state that occurs when a place or thing is filled completely with people or things, so that no more can be added.” Oxford English Dictionary
YES. Every moment of our vacation was saturated – filling us in ways that no more could be added. So much laughter, learning, poignant experiences, history, God-breathed interactions. Let me try to explain….a bit at a time.
Other than a few rest stops, we made our way through the rest of Ohio and into Pennsylvania. Our next stop was in downtown Pittsburg. My family members were honoring my long-held dream of seeing the Mr. Rogers memorial statue that sits next to the Allegheny River at a former Manchester Bridge pier near Heinz Field. But as my hubby drove through increasingly busy traffic like a professional driver on a closed course, we found ourselves in the middle of traffic and happy people all around us. We were swiftly, smack in what seemed to be, the biggest baseball game of the year: The Pirates v The Yankees at PNC park.
The game started in 15 minutes as our phones directed us closer to the 10’10” statue. There was not a parking space to be found, ANYWHERE. Still, my sweet hubby circled, searching for just one spot to park.
“Mama, there it is! Mr. Rogers!” My daughter certainly knew how to get my attention.
As we drove past, I caught the shortest glimpse of the back of Mr. Rogers head. And still, no option in which to park. After trying for a long half hour, my husband squeezed my hand, “We’ll come back tomorrow morning, babe.” I nodded, touched by the effort and slightly concerned I wouldn’t get to see it the next day either, as we made our way back out of town.
Our hotel for the night was about 30 minutes away and we were all hungry. A late night pizza party, a long late talk for my son and I, late in the night as my hubby snored. We had been awestruck by the sheer magnitude of the baseball and football stadiums, the beauty of the city- so many things we would not forget already on this first day of travel.
The next morning found us heading back to Pittsburg like we were now ALL professional drivers, on a closed course.
As we suddenly rounded the corner, there sat my friend Fred, the sun shining on the larger than life statue.
“Dad, it’s closed!” My son said from the back while we drove past again. The park next to the statue was filled with people and again, parking seemed sparse. My heart skipped as I heard his comment, craned my neck in order to see the statue, look for parking and not rush to anticipating disappointment.
Parking space finally secured, we made a short walk to the statue I have waited so long to see. As we walked up, Mr. Rogers voice, calm and reassuring, was saying “It’s you I like.” The sound system was state of the art, as it broadcast 29 different Mr. Rogers sayings and songs, outdoors. If I didn’t know better, I would’ve guessed I was in the very room with dear Fred. LITERALLY. I listened, then glanced toward the statue. The gates behind Fred’s back read CLOSED, there was scaffolding sitting between the statue and the gate and black and yellow caution tape blocking any path to the statue itself.
I stood there, listening to Mr. Rogers familiar voice and feeling crestfallen as the statue sat just out of my view. My family was quiet, disappointed for me.
“Come on, babe.” My husband took my hand, lifted the tape and smiled at me. My youngest daughter, a sweet, sensitive rule-follower, was instantly concerned. “Daddy, don’t get in trouble! I can’t watch!” She covered her eyes while we walked around the corner to the statue.
There overlooking the river in an amazing tribute, sat a huge, heartwarming memorial to one who still teaches so many how important they are.
Saturated, indeed. The care of my love, kids and parents to make sure I could see it in person, their understanding of it’s importance to me and their sweet treasured words about “how you are just like him, Mama.” The overlook at the river, the fountain, these photos and the sound of Fred’s voice was icing on the cake. I couldn’t not feel the very presence of Jesus in those moments, how he tried so hard to love a world like Jesus did, the natural beauty all around, the sheer creative talent of Robert Berks and the gifts of Cordelia May and her Foundation.
The other side…the “and” with this experience?
I think some have a really difficult time with experiencing beauty and the ways God turns up the saturation.
I gave a beautiful classmate of my kids a compliment after church this morning and it seemed she wanted to crawl in a hole. As Julia Roberts said in Pretty Woman, “The Bad Things Are Easier To Believe. You Ever Noticed That?” In the world this side of heaven, I believe it is much more common to hear, say and experience the harder side of humanity than the good. It can be bullying someone who is kind and good, because maybe the “bully” had never experienced that kind of good and therefore, needs to bring the good down to their level.
Or perhaps, good, for who hasn’t experienced it, is not understood, comprehendible or not attainable so why should anyone else get to either?
Perhaps in those situations, “the saturation” of God’s beauty, goodness and grace is just TOO much to take in and apply to our own humanity.
I think this was also true for Mr. Rogers. When viewing the documentary, there was a section on people’s doubt, or flat out mockery of his kind and beautiful purpose. From SNL skits featuring Eddie Murphy, rumors about “tattoos under his sweaters” and far-fetched stories about “Fred being a Navy Seal.” The hardest for me about were about his motives with children, those who would taint the goodness of his calling into something perverse.
Needless to say, there will always be those who have greater difficulty with “good,’ than with mean, unkind or even cruel.
As I stood looking at the statue, I noticed something dark brown in the corner of Fred’s mouth. My husband is 6’4, therefore higher than my own 5’3″ frame.
“Someone put a cigar in his mouth,” my hubby said, as he continued to squint upwards at Fred’s distinguishable face. Sure enough, there it was, though it was now broken off and could be seen as a “cavity” in the corner of the statues teeth. I was sad, but not surprised that someone had wanted to impact the good of the statue. Not that cigar smoking is bad, mind you. It is just…. for a tv icon, one who promoted, physical, emotional and spiritual health, the inserted cigar felt like, (no pun intended) making Mr. Roger’s goodness, the literal butt of the joke.
All in all, people will always be people, people have been wounded for thousands of years and God is the best redeemer. God does indeed saturate, but always allows us to CHOOSE if we want to come to him and revel in ALL of his colorful, holy goodness.
I am so thankful for our trip, for perspective, for legacy and truth, history and God’s very presence in the world. This adventure was just the beginning of feeling God everywhere, and being in awe how HE saturates.
I pray he turns up the saturation, revealing more of who HE is, no matter where you are in the world. I pray you see and hear him in ALL things and that the beautiful examples of God’s own heart are many, saturated in fantastic, vivid colors.
Both/And
Ezekiel 38:23
xoxo
“Thank you for giving me my life.”
When I met her, I noticed first that she had a brand-new beautiful baby. She expertly carried the car seat on one arm and I was jealous of how at ease she was. Our eyes met, across a couple rows at church and I rose to introduce myself. That Sunday and many following, I couldn’t NOT smile, every time I saw her. Her personality with effervescent, a smile that traversed her whole face. I was newly married, and I have no doubt that seeing how she cared for her baby fed my hopes of having babies in the future. She was capable and confident and even before I knew her, thought she was badass.
Our paths crossed again, on and off again and over a number of years, we became acquaintances. It was a few years later still, that I found myself again smiling, as I listened to her voice on my work phone. I said a quick prayer, acutely aware that God had known that I would have the opportunity to provide support many years later, through counseling.
She is a warrior, this one who has battled through many types of trauma, violation and loss. Her story is not mine to tell, other than, she is one who has taught me so much about the courage it requires to deep dive into your own heart, insecurities and fears, in order to create a healthier present and future. She is stronger than she ever imagined she was and continues to inspire those around her. One of my greatest honors was the moment she hugged me and whispered in my ear, “Thank you for giving me my life.” I tried to tell her that she had given herself every bit of her own life back, but was so moved that I couldn’t speak around the lump in my throat….
She would tell me later, with tears in her eyes often she couldn’t believe that people saw her that way and how she was, in reality, crumbling at that very moment at church. She told me how much “I didn’t like you some days of counseling and was so annoyed with the way you asked questions about things I didn’t want to think about.” She explained how there were days she wanted to yell or even quit, but if she had when things got tough, “I wouldn’t be where I am now.” She asked me to say, on her behalf, “that everyone needs a therapist, and that it is worth all the hard days.”
At another point in my life, I sat with a student whose sibling had died by suicide. Even weeks later, the shock was etched deeply in this student’s youthful face. It was nearly impossible for the student to put more than about 10 words together, instead, shaking their head over and over while whispering, “I just don’t know.” This was one of those unforgettable situations when I learned the difficulty and the beauty of just sitting in the silence when there are not necessarily words that can be said. It is an extremely hard thing, to sit next to someone when they need silence and intentionally avoid filling that holy space with unnecessary words because of our OWN discomfort. I still learn the art of this every day and occasionally feel like I do ok….
Still another, who was both so feisty and also badass, and tender and wounded underneath her carefully crafted tough exterior. She became a mom while still a teen, was bound and determined not to be defined by her age. She was prone to react to anyone who looked or spoke to her negatively, most times reverting to her native language in the heat of what she was trying to convey. My job was to help calm and teach healthy communication. But, true confession? I secretly loved when she switched between the language she had started with and the language she was learning. Beautiful.
I loved her fire, her laugh and the way she was loyal with every inch of her being, once you had earned her trust, though she did not just hand that out. She and one of her best friends were two of my favorite students that I got to spend time with. When her boyfriend died due to heartbreaking circumstances, I received that middle of the night phone call. I felt capable of so little, but those raw, painful, shocked days allowed some really beautiful conversation. That heartbreak gave me the opportunity to try to show up as I imagined Jesus would. I wanted so badly to take away the gruesome images and even worse pain.
As I am in the midst of this 28-year career, I am continually amazed, STILL, at the journeys I am privileged to witness and walk beside. There are so many I could tell you about: the ones that I will never know how their lives played out, others I will never stop praying for and still others who have passed away. There are still others beyond that who I get to witness in awe, find their lives again or maybe for the first time.
It is an incredible thing to sit across from someone and support, walk beside and encourage as they plod and weep some weeks, many days want to roll their eyes or even swear at me, grow in awareness and self-worth during other sessions. It is, hour after hour, of finding the beauty and bravery, acknowledging the whole gamut of human emotion and experiences, the joy of being given the best seat in the house as God reveals his truth to those he dearly loves. Throughout the process of holding others and helping them honor some of their deepest pain, people often share with me, “this is the truest to myself I’ve ever felt.” The thin veil of both/and is a great example of nuance.
Nuance, defined by the Oxford Languages: a subtle difference in or shade of meaning, expression, or sound. I love the learning process of discovering our own nuances, the nuances around us in the world, in our work and how we learn to care. I am fascinated when I can further understand the nuances of the Bible. I hope to learn as much as I can this side of Eden.
I love the depth of Hebrew translation. During a recent conversation with my friend and Pastor, Ross, he explained the Hebrew word, “nephesh.” It literally means “throat” and “as far as human beings are concerned, the Hebrew understanding of the word is, “the entire person, body and soul; It is not the human being has a soul, rather a human being is a soul.” Another part of the definition says, “soul as the seat and support of feelings and sensations.” This particular conversation felt like finally having a word for the fullness of life, the deep resonating sigh and the thought, yes, that is EXACTLY how I feel: that my whole being, belongs to the Lord God; that what I feel, I feel with my whole being because that’s what he intends for me.
For me, to begin understanding nephesh, is to understand love more fully and completely. Always, the tremendous and extravagant love of my Creator that changes and teaches me, guiding my entire being (my nephesh) to love and want more of him. The love of family, friends, the specific gifts we are given, that it how I know how to give and receive love, throughout my whole being.
It is my heart (and nephesh) that is so right, and whole in my calling these days and difficult spaces with clients, bravely facing difficult and complex trauma. It is the richest, holiest work. I get to talk with teens and parents who are entering the weird and wholly world of all things, college. Which one? Where? When? How do I pay for it? The biggest question I get asked and with a lot of frequency is this: “What if I don’t know what I want to do (for the rest of my life?) My answer is typically something like, “that feels like a lot of pressure right now, huh?” Then I usually let them in on a secret: ”you’re not supposed to know yet. It will come, that answer. It WILL show itself. Your job is to get familiar with that voice (some say conscience, some say intuition, still others call it the Holy Spirit) inside you that helps you just figure out the next few steps. Just one, then another. One at a time.”
Nephesh is also, the real-life blessings, both simple (the perfect tea cup, Earl Grey Steep Tea), a good laugh with the kids and the complex emotions: acknowledging that deep fear that flutters in my stomach multiple time a day with the idea of our oldest daughter and senior year. It is the fullness of relationship, a piece of my Mama’s peach/blueberry pie, straight out of the oven. It is the full-body worship of Never Lost, (look for this reference in the previous blog post)and the pure joy of our pups. For me, all of these are gifts from God, an outpouring of his rich, deep love because he is the one who knows me completely, my nephesh.
It is gazing at a one-in-a-trillion, orange, pink and yellow sunset and the surf of Lake Michigan, riding next to the beautiful horses when we bike to Windmill and waiting for them to approach me; their velvet noses, rippling muscles and eyes as deep as inky night skies, evoking deep gratitude for God’s every created thing. My soul leaps, feeling the fully-alive presence of Jesus in hymns new and old; riding in the car with my love, talking about everything and anything, noticing rolling hills and dreamy houses. It is praying hope over the future, watching our kids thrive, grow and learn (even the hard lessons.) It is relishing good food, (ice cream!) laughter, writing and building relationships. It is the safety of authentic lament and the joy of worship.
My soul, my whole soul craves the words, the peace that ONLY comes for me as I quiet down, remember the words, “The LORD your God is in your midst, a mighty one who will save; he will rejoice over you with gladness; he will quiet you by his love; he will exult over you with loud singing.” Zephaniah 3:17.
My soul is full. My being, my life, in the most joyful, peaceful AND the heartbreaking moments, is STILL full.
My soul, my entire being, is what God says it is – strong, brave, broken, sinful, Sprit-filled and not yet all that God says it will be. My soul IS the now and not yet, all because I have Jesus.
My soul aches, yearns for healing, peace and comfort as I do the work I do, or in the midst of friends struggles, or even my kid’s pain that is anticipated, but so difficult in their teenage years. The tears that come in the throes of beloved friends’ divorce, a loved one grappling with a difficult diagnosis, or the unanswered whys; even these…are part of my nephesh. As much as I long for healing, reconciliation, or ease in dealing with unthinkable pain, the belief that He created each of us with the entirety of our whole being and that he will redeem every part of our nephesh is the most important belief I have.
It is all nephesh, to me. God-breathed, God adored, you. He is cultivating, working and loving you through all the hard parts, the parts that take you away from who you truly are.
Another of my favorite verses, ” For in him all things were created: things in heaven and on earth, visible and invisible, whether thrones or powers or rulers or authorities; all things have been created through him and for him. He is before all things, and in him all things hold together.” Colossians 1:16-17
I cling to the very thought of HIM, being IN ALL THINGS, FOR ALL THINGS AND HOLDING IT ALL TOGETHER: our nephesh. How we care for each other, how we love (each other and ourselves,) how we stand up for each other, how we worship and how we enjoy every GOOD AND PERFECT GIFT.
May we not be afraid to live into the very way we were created, without fear, being true to our nephesh. May we notice everything from the beautiful, complex, simple and tragic with the emotions they all deserve and may we experience God himself in everything. May we trust him even when it feels impossible….
Pure JOY!
Both/And
Colossians 1:17
Who are you, great mountain…that you should not bow low?
I climbed the steep, wooden stairs, trying hard not to think about slowing down those behind me. I looked at the worn wood stairs, instructing my steps one at a time: step up, then again, then again. Some of the planks of wood were worn in spots to the point of seeing the path so many have used over so many years. As my nerves mis-fired, causing my muscles to tense further as I climbed those stairs up to the sanctuary I have seen many times on-line, but never in person, my toe caught on the second-to-last step and I stumbled.
My love was my oak, balanced and steadfast, did not let me fall. And though my face flamed at the thought, he smiled, reassuring me while he also held tight to my hand. We walked through the arched doorway and entered the sanctuary along with our beautiful daughter. My heart opened and I felt the presence of Jesus in the most tangible way…
Before I go further, I need to lift the curtain on the last few weeks….(actually, the last few years).
I wrote my last post on “lament,” a direct result of my own experiences in these last week, wanting to normalize the ache of lament and longing of so many others for peace and so often, at the mercy of an unanswerable “WHY.”
There is even lament this coming season of fall; so many both/ands: the lazy, easy days of summer swapping to the busy, schedule-heavy days of fall, school and sports seasons, the fullness of friendships and the aching desire to ease burdens related to health, crumbling relationships, caregiver fatigue and dessert-size void of grief.
Change, for the great majority of people is something to fear, in and of itself.
Our family is not immune. While I teach and assist with healthy coping, I also get to practice these myself. Did you see that, “I get to?” It is so hard to alter “I have to_____” with “I get to….” in an effort to remind ourselves that all things are a gift and that I do, TRULY GET TO: I get to walk up those stairs, where so many have walked, wanting, trying, pleading to meet God in that beautiful sanctuary. I get to walk at all, a gift not lost on me as I see another CP warrior in the sanctuary, moving in an electric wheelchair. I get to pray for dear friends, fighting infertility, another fighting for their very life in a long-suffering battle with depression. And I got to meet a dear friend who though we’d never met in person, has been the pastor, wisdom-giver and teacher for our family, especially during the Covid-19 pandemic.
For many of us, our relationship with attending and being a part of church communities became much more complicated in the last 5-10 years. While this is not a political post or even a judgement on “church,” the reality in my work and personal life could not be closer to the truth. Between the challenges of church attendance, financial issues and the ever-present fractures in relationships in the last decade for sure (if not before), our sense of safety and community even with church attendance has certainly become more tenuous.
About a year to the day before the world changed with the pandemic, our family faced a “crisis” of our own related to the church we called “home” for nearly 22 years, for many reasons. It was the church I was a part of since its’ planting, where I became an adult who loves her Savior, rather than a child of my parents who met, accepted and loved Jesus through their beliefs. They laid a rock-solid foundation of community, faith and love for the Lord Jesus. (They still meet with the same small-group of people, after nearly 40 years-absolutely incredible to me!) In my young adulthood, this was the church that gave me community, support and where I met my gift of a husband. It was the pastors here who assisted with the baptisms of our babies, and they were who we called in the happiest and hardest times of our lives.
But as time went on, the landscape changed and about a year before that mind-bending and life-altering pandemic, our church became unrecognizable to us and it seemed overnight, we knew it was no longer the right place for our family. To say that was a grief for me does not fully encompass the loss or the difficulty in finding our next church home. “Church shopping” is one of the biggest, most complex and emotional difficulties I personally and professionally have discussed with so many clients.
A dear friend and pastor told me about “a pastor on Instagram who is doing something on the Psalms, you should check it out.” This was just weeks before the pandemic, when we had begun to put roots down in another local church, but for some reason, I was dragging my feet in authentically investing. I did not look up the Instagram account immediately, even though I have ALWAYS loved Psalms. I was busy with a career, kids, marriage, and so many other parts of life.
Suddenly the pandemic was upon us and the entire world flipped upside down and seemed to zip up in an instant.
We were all a breathless as our way of life shifted in many ways, in mere hours. I was thankful for our kids youth pastor who was diligent about staying connected with students, but our church itself was unable to provide anything in the way of connection, support or even presence. While I felt completely unmoored, I remembered my friend John telling me about Pastor Steve Carter and the evening Psalms. From the first, “Good evening and welcome to the evening Psalms,” I felt the presence of Jesus as I had not ever before. Steve’s words were like the best glass of water, when I hadn’t realized I was even thirsty.
Steve began doing “social media live” videos almost every day, sharing his heart, wisdom, love for words and most importantly, sharing the love and relationship with Jesus Christ. His authentic, non-judgmental and humble presence was a new experience to me. He simply shared with such an authenticity and joy that I drank up those posts with a new desire to know Jesus better. It became my nightly ritual to savor those posts, listening and journaling at the end of my day and chewing on a phrase, verse or new perspective. I would text or call my husband and excitedly share with him new ways I understood the Bible, Hebrew words or some other way God himself was changing me. And because we did not have “a church,” we began to watch the evening Psalms as our church, our little family of five as often as we could.
By all rights, though he had no idea who we were, Steve Carter became our pastor as he wandered the dessert himself. (Literally and figuratively). He taught our growing teens about the “ok-ness of mid-rash,” the mountain top experiences with Jesus: my youngest has a FAVORITE – (emphasis hers). Psalm 8, where Steve describes going to the top of a mountain, covered with snow, spreads his arms wide and yells, “How can ANYONE NOT believe there is a God?” Suddenly, a skier comes flying by, and yells back, “I know, bro!” and sails down the mountain. (Paraphrased just a bit!) My daughter, cannot stop smiling as Steve smiles on the video, describing worship and the love of God the Father. “You get Jesus!” he joyfully states, explaining this relationship as the absolute GIFT that it is.
For two years, our family of 5 has listened, sought God in new and intimate ways because of Steve’s teaching and example. We are profoundly grateful and of course, because I value saying the things, (especially when we think the good things, because we don’t say that enough,) I reached out and shared our gratitude and hearts. We have found a beautiful connection. I joke at home with my family that we are “friends,” because I have so much respect and have learned so much, also because I often “make friends” with many. My family says they can’t take me anywhere, maybe this is my inner “Mr. Rogers, ” making friends in “my neighborhood.”
After this season of church together at home, learning from my friend, Steve, we all began to stir a bit to return to God’s house, to begin finding a “new” in-person church. I will readily admit that I was the one of our five who struggled the most with the “church shopping” ahead of us…for many more reasons than this blog has time for. The biggest, in truth was my fear of being hurt again by “church.” Not God. While many described a dessert or drought in their relationship with the Lord during COVID, my personal experience was very much the opposite. I am by nature, an introvert so the time of sheltering and safety brought in part, the opportunity to rest, to seek and to just be, with our family, but also with God. He used many, but especially Steve’s teaching to show me his pursuing heart in all together new ways.
I think this was part of my fears with returning somewhere to traditional worship, sometimes engaging with many at a time is challenging, both for my body, but also for my emotions. I am not a “floater on waves” but rather a “scuba-diver” in social interactions. I wantto make those I am interacting with feel any important and be heard. Truthfully, I am terrible at small talk…
God gently and consistently reminded me that there was a church waiting and kept putting my former childhood church on all of our minds. I am a bit ashamed to admit, I was resistant at first. I think most of us would like to distance ourselves from our “weird and awkward” younger selves, once we’ve become adults, would you agree? But God certainly had a plan and such a beautiful one.
The first Sunday of Advent did find us returning to the church I grew up in. I held my husband’s hand and his wise advice was, “walking in and finding a seat is success.” Success it was! The sanctuary was beautiful with an early December glow, we were greeted by my former pastors with hugs and genuine joy that we were there and instantly welcomed by acquaintances and a few special loved ones.
We have plugged in in beautiful, surprising, and holy ways, from our youngest (also an introvert) spontaneously asking to join the worship team, our teens finding community in the youth program, and for us, the blessing of new friendships that only God could orchestrate. This path is one of the richest and holiest of my life so far…
Steve Carter returned from he and his family’s own sojourn and is now preaching in Illinois. We’ve tried a few times in the last year to make it to his church and finally meet. It has been difficult to make a date work between our kids many activities. Until this past weekend.
My husband and I were taking our oldest to a college visit about an hour from Forest City Church. When I messaged Steve, he was indeed scheduled to preach. Throughout the college visit, time with our girl and listening to God’s leading over the weekend especially, I felt so much gratitude. I so thankful as well, to finally meet this friend who has so blessed our life.
He stood out in the sunshine, greeting guests as the three of us walked up. He leaned around the man he was speaking with and the recognition and smile we received was nothing but a gift. We all three understood the the blessing of spending a few minutes together. He offered coffee, directed us upstairs to the sanctuary and then went to get ready to share his heart.
Remember the beginning of the blog today?
Walking into the sanctuary after navigating those stairs had my heart beating a bit harder than usual, if I can be honest. I was afraid I would be “fan-girling” upon meeting our friend Steve, but truly, I think I was fan-girling more about how God himself just orchestrates every single step of our journeys for our good. To sit in that sanctuary, I was so humbled to know and love my Jesus SO much, to be in this space and could almost feel an intense anticipation at what the morning could bring. God took over my over-firing muscles and insecurity about climbing those beautiful but steep steps and almost whispered to me, “just wait, it’s going to be SO. GOOD.”
Oh my goodness. I don’t even have words. Worship was so full and tangible that I thought the roof was literally going to come off that decades old building, with beautiful arches, stained glass windows and scads of history. The first song had me in tears – Never Lost. But a few lines just leveled me.
“The night cannot whisper away what he said in the light.”
“Wind, listen to the sound of power on my lips…
“And who are you great mountain, that you should not bow low?”
Oh my Jesus, please remind those that need the biggest reminders, that the darkness is not stronger than even your whisper in the light – even when the dark feels so, so powerful. Please remind us that even the mountains, both majestic and daunting, MUST also bow to you. Remind us that even the wind, beautiful, frightening and fierce, CANNOT remain against how powerful you are.
The community, the worship and yes, Steve’s preaching was a blessing upon blessing. I am overjoyed that we able to be a part of it all, that God continues to put words and music from Sunday on my heart. I cannot stop singing, “never lost,” even the title of the song seems to be God’s way of whispering to me, “no matter what, I’ve GOT. YOU.”
Gratitude to Forest City, Elgin, for hosting and sharing all the beauty of your community. Steve Carter, thank you for being faithful to your calling, for being a pastor to our family. Hope to catch up again soon! You are a gift. To our dear “new church family,” you may never know how much we needed you and our gratitude for embracing us. Mom and Dad, for your love, legacy and faith that you pass on to each of us, I will never be able to say thank you enough.
Jesus, you are everything. Thank you for leaving ALL, never lost.
Both/And
Psalm 8
What do princess markers, Rubik’s Cube and Banana Nut Muffins have to do with Lament?
I wanted to take a moment and say a genuine thank you. I have been posting now for about 4 months and it has become a favorite part of my week. I really enjoy WORDS. I love the process of conveying my thoughts, experiences and how they all fit together with my many life roles. I value authenticity and how that plays out in my professional, spiritual and sometimes, personal life. And I am so enjoying the connection, hearing how others identify, validate and share their own connections to these words. Mostly, I am amazed seeing how God is using words to bring joy, comfort and healing.
Thank you for reading, sharing and most of all, encouraging, it means so much to me. My greatest hope in all of my roles, but especially this new one (aspiring writer?) is to create space to normalize our collective, complex experiences, share how Jesus loves, some stories and professional connections. My hope is always, to be real, human, healthy in my words, awareness and sharing.
To be honest, I am choosing the authentic truth of not having every post be
positive, cheerful or even, inspiring. Sometimes, in all honesty, it
takes immense energy to keep a put-together mask in place, but I continue to trust that
Jesus will intervene.
To that end, these last two weeks… I am tired. From the time between my last “badass post” and now, life has been full! August has ramped up, leading to sporting and school events, ongoing needs that I WANT and love being present with and some that my heart breaks for. When I sat down to write, my heart felt stretched thin in my own lament for a few loved ones in my life, their health concerns, mental health, relationship conflict and even interpersonal conflict has made this week feel particularly trying.
Maybe you’ve been there before or are currently sitting in your own both/and between outrageous hope AND intense lament as well. Or maybe… feeling hope is good, but the idea of lamenting makes you uncomfortable, sad or wanting to push the hardest of feelings anywhere but where someone may ask about them.
I get that. I am feeling some of that myself.
Lament, in my own understanding, is the dark night of the soul. It is the agony and ache that are too deep for words; the one that nearly levels us with it’s weight, where all we can do is wail, howl and cry out with perhaps a sound only God himself can understand and soothe.
The Oxford Dictionary defines it as “a passionate expression of grief or sorrow.” It may sound weird, but as you read that definition, notice your reaction, deep in your body. Does something stir when you see and hear lament? Just take a second…and a deep breath.
Do you feel anything related to emotional misery that you can still recall
it? Perhaps it is stored IN your body somewhere, a twinge, or a sharp, deep breath,
even as I suggest going back to the memory? Usually when I ask this in
counseling, I can physically see something, a pain so deep that non-verbal
communication gives away when someone is trying so hard to convince me
“they are fine,” in the midst of devastating pain.
Do you feel a time with emotional misery that you can still recall it? Perhaps it is stored IN your body somewhere, a twinge, or possibly a sharp, deep breath, even as I suggest going back to the memory. Usually when I ask this in counseling, I can physically see something, a pain so deep that non-verbal communication gives us away.
I get that too…
If you had a chance to read the last few blogs, I have shared a bit of my own story related to the loss of a dear friend whose life and death deeply impacted mine. It was through the tragedy of drunk-driving accident, his death and others, that I began to avoid, fear, learn, understand and finally allow myself the truth of what it means to lament. What was surprising to me is that I eventually came to cherish the lament. Cherish? Yes, I did, I said cherish. If you will, please keep reading.
Over my 26 year career, the normalcy, my level of ability, and comfort in talking about feelings is vastly different for me now than I was able to do back in my 20’s. In learning to allow for lament, I simply did not know the depth of my capacity to feel sorrow. I did not understand the ache inside me that often did not even have words. When I finally gave myself permission to feel, slogging through the holy work of sitting with anguish, I learned the importance of sifting in the ashes. I learned first-hand the only way THROUGH the hardest of emotions, the deepest losses and insecurities IS THROUGH. (Remember this line in Going on a Bear Hunt?) I began learning then that we will lament much over the course of a lifetime and we will also come through.
Often, it is not the big tragic, unreal events that teach us about lament. I believe we ALL lament in different ways, most of the time not even knowing that we are indeed, passionately expressing a deep sorrow.
Perhaps we begin around toddler-hood – the lament of sharing toys, sharing parents when a new sibling is brought into the mix, moving to new homes, cities, or enduring other changes. At this age, most of the lament is because we can’t always have what we want.
When my daughter was three, I took a brave (or crazy) trip to Target with she and her one year old brother. My sweet E was passionate, strong and already aware of her own desires. She was trying out “wandering,” so I told her we could pick out one thing from the dollar section; if she stayed with me the whole trip through Target, (without running off,) she could bring her thing home with us at the end of our shopping extravaganza. An extravaganza it was, just not in the way you might expect…
Two aisles before the check-outs, she darted down the dog treat aisle, then proceeded to giggle and run away from me. I was terrified of this very scenario as a mom with cerebral palsy, but on the good advice of a friend, I did not chase. I called, “Uh oh…” and slowly began walking up the main aisle with my son staring up at me from his seat in the cart, with big blue eyes.
My spirited girl came running and then raced ahead of me to put her princess markers on the belt. I was already coursing with adrenaline from her solo trip down the aisle, fear of not catching up with her and then her return. She began to climb on the side of the cart, fingers barely touching her coveted markers and my adrenaline spiked again. I felt the heat creep up my neck. Was I going to stay true to my stated boundary and NOT get the markers, risking a tantrum in a very busy Target or was I just going to give in to keep peace with her?
I KNEW that I had to follow-through otherwise I was giving the green light to run from me every single outing. I told her in my best empathetic voice, “I am so sad, we can’t get your markers. Do you remember our deal? You were going to walk with me the whole time and NOT run away and THEN we could get your markers. But if you run, then we CAN’T buy them.”
Her body went rigid, her eyes widened, then narrowed, then she shrieked her displeasure for the entire store to hear. I instantly began sweating as my items were already on the belt. Customers heads turned and her screams got louder. As I held the boundary and did not buy the markers, she laid down, pulled the cart and screamed, “I WANT MY PRINCESS MARKERS!” Her lament (and mine) were very real.
(Though not a huge, prevalent part of the story, I wanted to let you know that this was the only tantrum we had with our now almost 18 year old. The one tantrum, one boundary was enough to curtail her ideas of running away from me in the aisles. )
As we grow our laments morph and change: pet loss, divorce in the family; the lament when we are not chosen for a team, asked to prom or not accepted at the “dream college.” The agony of single-ness when we long to share our life with another, the guttural moan when we don’t see, understand or want to be on this path. Job competition, rejection, complicated fertility, health challenges, terminal diagnosis, even aging, can elicit a deep expression of anguish as perhaps memories, abilities, energy and relationships are changing without our permission.
I’ve had the privilege of speaking with little ones who deeply lament the loss of a pet, a favorite stuffed animal left on vacation or the friend who has moved away. I have sat with many who lament identity, starting over after divorce, loss, long illness or sending children to college. There are those who lament and battle with themselves to remain alive here on Earth. I have held space with many brave hearts who hour by hour lament the loss of one or many they love, deeply sobbing, “I wish it had been me, instead.” And some of the saints among us, who lament they cannot yet “go home to Jesus.” Lamenting is probably, in most our minds, connected with death.
“Lament, meaning a crying out of the soul, creates a pathway between the Already and the Not Yet.” -Aubrey Sampson
We are called to learn the anguished cry of lament. Lament is the cry of Martin Luther King Jr. from his kitchen table in Montgomery after hearing yet another death threat: “Lord, I’m down here trying to do what’s right. . . . But Lord, I must confess that I’m weak now, I’m faltering. I’m losing my courage. Now, I am afraid. . . . I am at the end of my powers. I have nothing left. I’ve come to the point where I can’t face it alone.” Taken from Reconciling All Things: A Christian Vision for Justice, Peace and Healing by Emmanuel Katongole and Chris Rice.
For many, the hope for the Not Yet, is the rock to cling to, while in the center of crippling lament. For me, learning to cherish all I learned, came only after the losses that shook me to my foundation. (At the same time, sometimes having a hard time knowing I was actually still clinging to the rock that held me.) As the defenses I relied on in order to pretend I was be fine fell away, I could only surrender to the mess, or as Brene Brown says, (learned in her discussions with Navy Seals – EMBRACE THE SUCK.) Learning that the only way through, was through, gave me permission to examine every part, with curiosity and kindness instead of judging myself: anger, shock, change, agony, injustice and so many other feelings.
I often tell people that allowing for feelings is a bit like examining and manipulating a Rubik’s Cube. I can never solve them, but my son can, in mere minutes. I watch him get one color complete, then mess it up to get another color correct. He turns the cube, looks, changes something and looks again. He doesn’t however, get mad at the cube for being what it is. In the same way, getting mad at ourselves, whether in the lament, in the happiness, or any feeling in between is counter-productive. We can so much sooner help the hard feelings by caring for and crying out that anguish, keep the “Not Yet,” in view, while also allowing for and honoring all that has been lost.
If only it were that easy…
“Grief, after all, is part of love. Not to grieve, not to lament, is to slam the door on the same place in the innermost heart from which love itself comes.” – NT Wright.
Isn’t it so scary, sometimes, to feel the hardest feelings? But isn’t it harder to keep pushing the feelings and anguish down? Is the fear of feeling our own lament stronger than the lament itself? What if we could honor the feelings of lament themselves as part of our love story, the one about God, his love and the many we turn to heal when we become heartbroken this side of heaven? The love in that very story is how Jesus redeems and will keep redeeming every. single. lament.
You see, though I had known Jesus because of my parents faith since before I could remember, my own relationship with him had it’s own path; a cherished part of that path that was ultimately in the days, months and years following my friend’s death, because it was exactly there, that I met Jesus. He was exactly where I felt like I had nothing to offer except my shock, anger, resentment, authentic belief, even when I could not understand: in the heart of my lament.
Time after time in that year, God himself allowed for all those emotions, sustaining me in a rigorous MSW program, an internship at our local Hospice organization, blessing me with a support system in my parents, friends and colleagues that showed me the beauty in authentic lament. God graciously brought my husband and I together, almost exactly one year from my friend’s accident, and he offered a calling into counseling, specifically grief and trauma counseling.
In Nicholas Wolterstorff’s book “Lament For A Son,” he says that every lament is [ultimately] a love song. Lamenting is the other side of loving deeply and I’ve come to believe that you truly cannot have one without the other. It is a difficult and holy both/and.
The Psalmist gives the best example of both the lament, the love story and both/and in Psalm 13.
(for the director of music, a psalm of David).
1 How long, Lord? Will you forget me forever?
How long will you hide your face from me?
2 How long must I wrestle with my thoughts
and day after day have sorrow in my heart?
How long will my enemy triumph over me?
3 Look on me and answer, Lord my God.
Give light to my eyes, or I will sleep in death,
4 and my enemy will say, “I have overcome him,”
and my foes will rejoice when I fall.
5 But I trust in your unfailing love;
my heart rejoices in your salvation.
6 I will sing the Lord’s praise,
for he has been good to me.
If David, a man after God’s own heart, is allowed to lament (and had so many things to lament, many his own choices) and TRUST, then can we? There is also Jesus, lamenting in the Garden of Eden allowed to lament….AND trust. Can we?
There is hope, even in the lament. There is space for great anguish and trust, even in the fear that so often accompanies pain. And perhaps in time, there is room to see the love story in both.
I pray that you who are struggling to catch your breath because your lament is so heavy, are able to cry AND be comforted; that those who are experiencing joy can share it with grace and that we all can love one another like Jesus.
Both/And
Psalm 13
PS I couldn’t not add this from my friend, Brene, from Her 2010 TEDxHouston talk on The Power of Vulnerability “The problem is–and I learned this from the research–that you cannot selectively numb emotion. You can’t say, here’s the bad stuff. Here’s vulnerability, here’s grief, here’s shame, here’s fear, here’s disappointment. I don’t want to feel these. I’m going to have a couple of beers and a banana nut muffin. (Laughter) I don’t want to feel these… You can’t numb those hard feelings without numbing the other affects, our emotions. You cannot selectively numb. So when we numb those, we numb joy, we numb gratitude, we numb happiness. And then we are miserable, and we are looking for purpose and meaning, and then we feel vulnerable, so then we have a couple of beers and a banana nut muffin. And it becomes this dangerous cycle.”
Both the hard, difficult, vulnerable and gratitude, joy and happy. And banana nut muffins. 🙂