“We could implant a pump for your muscle spasm medication.” Dr. Rush began slowly as I described the contractures that I experience due to cerebral palsy.

I felt my body react in every way: muscles tightened harder, ready to fight this suggestion, my emotions instantly “not wanting to be a person who needed more than oral meds to manage CP” and my heart feeling…embarrassed at the suggestion? Shame? Failure, that I wasn’t managing this well enough, that we were even talking about this? Looking back now, 18 months later– Yes, I was instantly battling all of these…but why?

I think to understand that, we need to go back much further….

I have shared some of this story, pieces and parts along my 51-year-old path. The beauty of time (at least sometimes) is that we get the opportunity to look back, with better vision than we had at the time we were IN a certain part of our journey. For, me, the far more important part is that I get to see how the God I love has been at work through the whole journey because I know and trust that he was, is and always will be.

I was born to parents with medical backgrounds, in a part of the US that had one of two NICU’s at the time. I was born to parents who instilled the blessing and saving grace of a relationship with Jesus Christ. I was given to a family who had the knowledge and ability to pursue treatment, surgical and otherwise to give me the best possible outcomes I could have, with my level of CP. These are all true, all of which I am forever grateful for.

AND

Having CP is a bitch. My body is perpetually confused with what to do and how to do it, from each step I take to maneuvering around kids’ stuff on the floor (or my own,) tripping or falling for no good reason, navigating ice and snow in the ugly Michigan weather and a million things in between. My muscles are constantly “ready,” meaning flexed and tight – requiring a ton of stretching, moving and working through that every day. As I write this, I feel like I am both complaining, and… I am acutely aware of the blessings that are mine, that CP for me, is not harder.

The level of severity for the 1 out of 400^th person who is born with CP is as varied as grains of sand. For some, it is “minimal,” though even minimal is a lot. For others, it is moderate and still others, having CP is severe, the most severe meaning a life without the ability to walk, talk or control your own body. With each level, there is also the possibility of cognitive impairments, all related to the amount of time a person’s brain is deprived of oxygen. The longer that time is, the more involved, impairment becomes.

Yes, I live with both gratitude for all the ways my body functions for me and the grief, anger and frustration that comes with having a life-long disability. I never want to take for granted all that I CAN do, yet, I am finally learning, that it is more than ok to care for the parts of my body, mind and heart that grow tired, endure pain and battle every single day, to live with CP this side of heaven.

As an adult with CP, I have not had a specific doctor who specifically works with the mechanisms of CP, how to manage that and ways to help with it. (At least, not until two years ago…)

Remember that statistic, as we go, 1 in 400 people are affected with CP. What that means in our world is that I don’t really ever “see” someone with CP, like mine. In fact, I don’t really see many. But that also means that for much of my existence as an adult, I’ve kind of been making it up as go. Please don’t misunderstand! I have an amazing support system of family, friends and medical professionals who whole-heartedly support me and my needs. But, having a medical professional who works specifically with CP and is up to date on medication, medical treatments and possible changes? That felt like searching for a unicorn….

As only God can do, I was speaking with a friend who referred me to a neuro psychologist for some testing for a client. It just so happened that the neuro-psychologist shared an office with her husband, a physiatrist. Months before, my physical therapist had asked me if I had ever been in touch with a physiatrist, a medical doctor who works specifically with pain, gait and muscle issues and so much more. What were the odds that in a passing conversation with my PT, a recommendation for a completely different doctor and her being married to and sharing office space with said physiatrist could lead me to exactly where I needed to be to manage CP better as an adult. There are no coincidences, my friends. It is ALL Jesus, always.

Because of so much medical complexity, past surgery trauma and genuine “white coat syndrome” that I still have, I went for that first appointment with Dr. Rush and promptly began crying when he walked into the room. I will not forget his kindness and understanding and even dry humor as he listened during that first appointment. I had come in with a torrent of emotion, fear and anxiety because it has been a long journey with CP. But I left that appointment with hope of relief in this adult with CP body. He was kind, so damn knowledgeable and confident there were things we could try for relief.

For the next year, he gained my trust, (no more tears,) always impressed me with his knowledge and care and each time had suggestions to assist me with living with CP. It was then he began talking about a baclofen pump, where this story began above…

I began taking oral baclofen in my twenties at the suggestion of a friend who is a quadriplegic. It was life changing for me, due to the electrifying muscle spasms that seem to overtake my body in the evening and overnight. For about 25 years. That medication has been a lifeline to me. And yet, there are still many nights that I wake screaming because the spasms literally feel like electric shocks, over and over.

Dr. Rush explained as talked again about the spasms, how an intrathecal baclofen pump worked.

Because my brain instantly thought, “I am not that severe, I don’t need to go to that extreme,” I probably dismissed Dr. Rush’s suggestion without a lot of consideration.

We’ve made due with adding some other medications, which have contributed to some weight gain, mental fogginess and though helpful, all oral, so probably not the most effective.

Fast forward to the beginning of this winter when the spasms began to increase again with a vengeance. I talked with sheer frustration again with Dr. Rush.

He was gentle but pointed with the realities of aging with CP, with his suggestions then I asked the magic question, “If you were me would you get a pump?”

“Stacy, I were you, I would’ve had it 20 years ago.” With that one sentence, Dr. Rush cut through my fears, insecurities and excuses. It was a sobering and clarity-giving moment.

I began the discussions with my husband and assuredly, did not have all the details right. Husband was fearful of surgery, spine issues and possible risks of having an artificial device implanted in my body. I loved him that much more for his love and concern. More conversation with our kids, friends and trusted wise counsel. I just couldn’t settle on a right answer…

Again, as only God can do, he placed the right person, right where I and he needed her to be.

I have for the last year been writing a bit for the Cerebral Palsy Foundation and am finding more connections there all the time. As I had been connecting with Jen for a while regarding my writing and other opportunities, it occurred to me that she would be a great resource about this decision.

In a very short time, she explained to me how the pump works for her grown son who also has CP, how the surgery was not the vision we had in our minds and how the relief is possible from the constant state of spasticity my muscles endure.

I cried tears of being understood, and the possibility of relief as she and I said goodbye that day. I continued conversations with the kids and that day even, Dr. Rush. I introduced him to hubby on the phone and he couldn’t have been more patient, explaining the process (again to me) to husband. Hubby and I chatted, pondered and prayed all through the day and by evening, ended feeling like this was the very next right thing in managing a lifetime with CP.

Two weeks ago, was a whirlwind of meetings with a neurosurgeon who will place a catheter in my spine that will be connected to a pump placed under my skin by my rib cage. It will deliver baclofen in a micro dose, directly to my spine, which ultimately is where those spasms originate.

After that meeting was another with Dr. Rush who as typical, is so patient and knowledgeable. It is hard to explain what those things mean to me in the medical realm. The best I can say is that as a kid, the surgeries and medical appointments happened to me, were exactly right, but were also traumatic in my abilities to understand at that time. This choice, feels like my adult self is showing up in my scared kids’ place and choosing this for myself.

Dr. Rush showed us an actual pump, looks like a gold hockey puck. It is hard to imagine how it will feel IN my body…

The next step was to have a lumbar puncture in which a radiologist took a bit of spinal fluid, inserted a small dose of baclofen into my spinal cord, like a pump will do and see how my body responded. This test dose is a necessary step to ensure the medication will work for my body, as well as an insurance requirement before putting the equivalent cost of a high-end Mercedes into my body.

Friday, husband and I arrived back at the hospital where I’d endured so much as a kid. Only this time, as a fully-capable adult. I’ve done so much work, processing, journaling and EMDR to get here. I am so proud of that, of me and of us for the healthy becoming required for me in living with this disability. It is part of why I am driven to help those who want to process trauma. If you can hang with the process, coming out on the other side of our traumas, experiences and things we’ve stored, is the greatest gift. There is nothing like the peace of being comfortable in your present skin. Doing the work does not fix the hard things we endure, but it does make us less afraid, more attune and alive in our present selves, at least in my experiences.

I had fantastic nurses, doctor and care during this test dose. I managed the nerves that inevitably rise when we are doing a big medical thing. I was able to speak for myself, honor the needs and fears I carry and be authentic. As we rolled down the hall, me in the gurney and Stephanie the nurse trying to chat to get my mind off the rolling, I had a wave of anxiety. I tried to be kind and gentle with myself and soon, we were in the room and I was rolling off the gurney to another table. I tuned all the voices and noises out, praying and feeling God’s presence in the room. A rough few pokes of Lidocaine, bits of jabbing pain, and suddenly, Stephanie and Mia (nurses) were helping me roll back on the gurney and we rolled back to my room.

“You need to lay flat on your back for two hours to avoid a spinal headache. You may or may not feel that baclofen working while you are here. If you aren’t sure if you are feeling it work, we will probably need to repeat it.” Um…no thanks! I laid still while hubby snoozed in the chair next to me, wondering, hoping and praying to feel some sort of relief. My feet carry the brunt of the muscle tightness sometimes, my feet and toes feeling clinched as tight as they can get while still trying to clinch more. As I laid there, I noticed first that my feet were relaxed. I tried to clinch my toes and I couldn’t! (What???)

As I lay there, the strangest sensations of loosening continued throughout my body. I couldn’t stop smiling. My breath came easier and the sighs of relief that my body emitted felt other-worldly. I told hubby and E as she arrived to keep us company that I truly, could not stop smiling.

I have often told people that I don’t know any different than this body. I have had some level of this my whole life. You learn to live with your level of normal, don’t we? But this relief? Well, I have begged God, pleaded, screamed, cried, agonized and come to acceptance that healing and relief this side of heaven were not to be for me. (And then probably the next day, begged, pleaded again – wash, rinse, repeat.) I think this is extremely normal when living with any sort of chronic condition. NO judgements! And, I think it’s extremely difficult even though, I am exceedingly happy with my life, not to feel the weight and difficulty of chronic pain.

This day, however, was nothing short of miraculous hope. Because of science and God-given abilities in the medical field, this relief, this peace that I’ve longed for was happening and within reach because of the “gold hockey-puck.” Suddenly, I could envision, days, weeks, maybe years, of diminished pain and spasticity. Unreal….

Over the next, nearly 24 hours, my body experienced the least amount of pain I’ve ever had. It was pure joy. Also, I will probably again, need to teach myself how to walk on muscles that have changed. But even that, makes me smile because, of course! If I can do that with less pain, NOT A PROBLEM!

Surgery is scheduled for February 24 and though my body is not excited about surgery, recovery and the logistics, the anticipation of how I felt for the last 24, compels me – February 24 cannot get here soon enough.

I am in wonder; I am at peace and I am filled with hope and potential like never before.

I am so grateful for my people, all of you. I am thankful for medical professionals, especially you are so scientifically skilled AND have the ability to be kind, empathetic and gentle. You are a gift.

I am beyond grateful for my family, who loves, supports and worries in the best possible ways. You all are my anchor. Most of all, I am thankful to my Jesus, my Savior who is always saving me in every way. He in all his goodness is always putting the path right, in spite of me. In spite of my doubts, screaming, pleading, anger and fear, he is always right, loving me and he is present.

Perhaps that sounds so easy for me to say. Perhaps you fight your own battles – as we all do, and you DON’T feel God’s presence. I get that, there have been so many times on my journey that I have felt like he utterly abandoned, rejected or just was simply ignoring my cries, anger, desperation and/or fear. All I can promise, is that he doesn’t, and won’t. It’s not in his nature.

Imagine the person who is the most for you; the person who has proven their love and steadfastness so much that you never doubt their presence and place in your life. Just for a minute, imagine that 100x stronger than how you feel it now…that’s Jesus, only never-ending.

I pray for peace, his presence and the feeling of hope and potential for us all. Even with today’s politics, all the terrible and awful we are assaulted with every day and the tsunami of pain and fear that threatens at any given moment. He is near, all shall be well. I pray that whatever battle you are facing and fighting, you have glimpses of miraculous hope. Don’t give up…

 

Both/And

Xoxo

Psalm 13

Around 1995, I heard a song. It was a Christmas song, but funny, I only remember one line of the lyrics. Not the name of the actual song, nor any of the other lyrics. Just 7 random words that have stuck with me for about 30 years…

I wish you a brave new year….

You see, about that time, I was grieving the loss of my grandpa, (who died just a few weeks before Christmas)  and was nearing the 2nd anniversary of my Gram’s death. The time since losing her had not in any way, been easy. I learned more about grief in the loss of her than I could write in 100 pages. We often learn the most in the midst of the hardest seasons, from my perspective. I remember, as the Christmas season approached, still and again feeling shocked some moments, angry in other moments, lonely and desperately sad in others and feeling like the me I’d known before, was completely gone following the loss of them both. The loss of Gram began a process of learning about death that changed me in tremendous ways. With every death following, I have grieved the same and differently. Grandpa was different in many ways but taught me its’ own lessons.

I worked for a teen ministry and monthly, I wrote a letter to update our donors about the ministry and the impacts their donations were making. I loved writing those. However, as the difficulty of grief overshadowed many of the ways I experienced joy, writing the Christmas edition of our newsletter was proving to be difficult that year. I was restless, numb and could not find inspiration under the weight of all the confusing, conflicted feelings.

While riding in the car with a dear friend, a Christmas song came on. I am sure I heard it like Charlie Brown hears his teacher….(Waaa waaa, waaaa, wa wa, you get the idea.) But like a light piercing darkness, the lyric, I wish you a brave new year pierced through my grief-heavy thoughts and instantly brought tears to my eyes. My dear friend understood without any explanation that again, grief had shown up in the most obscure way. I am so thankful for that friend, with whom I have known for 30 or more years and we’ve walked through much, including a lot of other losses. She just understood…

I leaned my head back as she drove, half-praying and half willing the big emotions away as the line repeated: I wish you a brave new year. I had no idea how to be brave in another year without them, or any day, for that matter. Yet, as my friend took me shopping in an effort to “be normal,” the line kept running through my head.
I lay in bed that night, praying for bravery for myself.

In the next few days, I sat down and somehow, the newsletter came together. It became a wish for a brave new year as the central theme. It became a drum-beat in my own life and prayers for so many others over time.

I’ve never forgot that line and as I get to this time of year, it has come back to me, again.
I find myself thinking, “Oh my stars, don’t we need bravery more than ever?”
It’s been intense for us as humans this year. Health concerns, social and political upheaval, financial concerns, loss of many kinds and the list goes on…
And we’ve had so much bravery! I am so proud of us all. Holding onto faith, family, careers, our ideals, our hopes and dreams. And yet, the wish for a brave new year couldn’t be more important.

Recently, a dear colleague lost her valiant battle with cancer. She was one of the best therapists I know, she taught me so very much about building rapport, attachment and having fun. Her brave, beautiful fight for life was nothing short of breathtaking. I am praying bravery over her family who endures the loss her, this side of heaven.

A couple from our church have shown me so much about bravery. Perhaps that isn’t even a big enough word…they have immigrated from Venezuela under very intense circumstances. I’m sure I haven’t even heard the smallest bit of what they have also endured but with the bit that I have, I wouldn’t blame them if they were bitter, frustrated or scared. But to say they are the most joy-filled humans I’ve met in a long time isn’t a right description, either. I don’t know of anyone I’ve met recently, who is braver. We all could use that kind of bravery…

Single parents, those who are doing the job that is meant for two, while also caring for themselves.

Those who fight to get out of bed each and every day because of the dark and anxious thoughts that threaten each moment.

Those who endure the plight of homelessness, the cold, food scarcity and painful days.

Yes, the list could go on and on, we could all add to it.

I am overcome with the desire to pray, hold dear and plead for mercy and brave hearts for many as we go into a new year. I have learned so much in the last 365 days. I also know without doubt that I have never been more aware of my need for the love and sovereignty of God than I do these days. It is all both/and isn’t it?

How ever you are stepping into 2025, whether brimming with hope, fighting back hopelessness or somewhere in between, I am grateful for you and praying you into a brave life that is filled with the good.

Jesus, you and your presence is so needed here and now. I am so grateful that you are aware of the many, many ways we need and love you. Even when it feels like there is so much that is hard and scary or even unthinkable, you are the bravery we all need. You are good and true. Thank you for another year that we get to remember how brave we can be because of you.
“Have not I commanded you? Be strong and of a good courage; be not afraid, neither be you dismayed: for the LORD your God is with you wherever you go.” Joshua 1:9

Both/And
xoxo

I wrote this Monday, but for some reason had difficulty publishing it…

She smiled at me, eyes full of depth, love and joy.

“Mama, you are always there for us.”

My heart jumped up to my throat in that very second. The dialogue in my mind was so ready to argue the minute she said it to me. “No you’re not, you completely blew her off the other day. You didn’t show up for her rehearsal, you overslept so she overslept and she is really stressed out about her busy day.” My inner critic was instantly telling that I kept screwing things up as her mom.

“I love you so much, Mama.” Her arms slid around me and the hug she so willing gave leveled me. I held her back, brushed the hair off her forehead and kissed her head.

“I love you too, babe; more than you will ever know.”

“Oh, I do know mama. You tell me all the time.”

Though this interaction was with my youngest over the weekend, it has been with my older two over time as well. Consistently, they love in spite of my “mistakes,” my inner critic and all the ways I am human.

Perhaps you relate? I have been alive AND a therapist long enough to know that I am not in a minority in the ways that we beat ourselves up, emotionally. It is by far, one of the most common themes that show up in counseling. We have soaring expectations of ourselves, our conversations, our stamina, our parenting, communication skills, parenting and the list could go on and on…

It is increasingly more difficult in our society to be kind to each other, let alone to ourselves.

It would be easy for me to become jaded as a therapist in the world as we know it today. It is one day before the 2024 Presidential election, the world is exceedingly polarized and it seems, lacking empathy and filters with our friends, family and loved ones. If I am honest with you, I am not jaded, but I am a bit weary: the biting and bitter rhetoric that comes at every turn, families and friends who walk on eggshells with one another, a profound loss of respect and finally, saturation by ads, mailing, phone calls and texts. Yes, I AM a bit weary…

More than that though, I am sad. I am pained and hopeful for something so much better for all of us.

 Dr. Martin Luther King Jr said, “If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do you have to keep moving forward.”

Whew….that’s a thought, isn’t it?  Whatever we have to do…?

What have those before us done, in order to keep moving forward? Our history books are full of those who have worked, scraped, sacrificed and never given up to keep going forward. Our Bible – the very life and love of Jesus…

We took communion at church yesterday and our guest pastor talked about “taking, receiving and giving.” I can’t stop thinking about that today…

It is my hope and prayer today, that we can really SEE one another as we vote or maybe already have. Can we see the person just ahead of you at the polls, another who is wearing the opposite candidate’s t-shirt as someone’s mom, dad, teen or grandparent? Can we see ourselves speaking to others as if they ARE those people in our lives?

I’ve been doing a lot of talking with those who have been around longer than I. Most reflect to me, “Elections were not this way before. If your candidate won or lost, you may have been happy or sad, but everyone realized this was democracy and why we all get to choose. It has become so divisive, splitting relationships and involving a level of anger and bitterness we’ve never seen.”

How about you? If you are reading, do you agree? Or is it difficult to remember anything other than how the political landscape feels today?

Here’s my thought today… if this is all you can remember, both political parties with drive to win, to be for America, but with decidedly different approaches and the spirit of pain, dissension and ugliness that we can all feel, let’s make the next 24 hours better. Let’s make the days and weeks following Election Day, results and everything after, BETTER. Let’s make that our most important goal, no matter what – as if we actually WOULD, FLY, RUN, WALK, CRAWL OR WHATEVER WE HAVE TO DO TO KEEP MOVING FORWARD.

******

*Here I am, the day after this election has been completed. I read through these words I jotted on Monday and they are poignant to me. “Whatever we have to do to keep moving forward…”

This takes on a new meaning for all of us today, I suppose. However you land with these results, celebrating or hurting, hopeful or disillusioned, God is for you, he is for us, ALL.

Take good care of your hearts, your thoughts, and your people. Breathe, look around, find something beautiful right where you are.

“Here is the world. Beautiful and terrible things will happen. Don’t be afraid.”

Frederick Buechner

Both/And

Psalm 13

xoxo