it is true
what they say
in how your body
finds a way—

no grief too big
nowhere to hide
i cannot ignore—
invisible inside

what is left unsaid
will not cease to be
forced into feeling
memories unseen

naming it—a loss
a loss for words to name
fearful anticipation
of never-ending bane

aimless, no direction
wrenching at my soul
always at the mercy
of the absence of control

confusion threatens safety
lack of logic, tear amiss
floating into morrow
choosing to submit

yet, as I disintegrate
i still manage to regard
incomprehensible beauty—
despite what still is marred

It feels like I’ve lost the way to write sometimes, but really I think it is just that it is taking me a really long time to start typing again. It feels like I’ve lost a connection and I can’t find the number to call for repair.

Whatever it was that bridged my soul to words isn’t as easy to access right now. I wrote so much when she was here and now that she is not, maybe I am just going to have to find my way through. I keep thinking there is something I’m not doing, but what I am doing—is grieving. For so long I thought that I lived in a perpetual kind of grief because of unending trauma and uncertainties. But now I know that is not true. This—this is grief. It’s like driving on the interstate and suddenly a brick wall appears. You wonder how you can possibly still exist after such an impact. The world around you keeps driving by as you sit, stunned, attempting to pull yourself from the wreckage…

How is it possible to feel a deeper sadness the further away time pulls me from when I was last with her?

Time does not heal. Time just keeps moving. Time is just a reminder of how many days and weeks and months it has been since she left. Time does not heal. Time has no grace or patience or ability to do anything other than to continue to inch me further away from being with her. But time is also what gives me the ability to take as many deep breaths, quiet days, and guiltless naps. Time is what I have to listen to my body and soul as I allow myself to continue to acknowledge what it went through the last few years, and try to discern the ways to restore. Time—to rest.

Right now rest continues to look like spending as much time at home as is feasible, limiting social engagements, and going to bed at 9pm. It looks like breath prayers, and reading, and knitting when as my mind continues to try to revert back to survival-mode-induced anxiety. It looks like taking more notice of sunsets and sunrises. It looks like taking walks without earbuds and without worrying about my pace. And really, it looks a lot like: grief. And part of resting I guess, is accepting that this is what it looks like, and giving myself grace—and then a lot more grace.

Grief forces me to rest. And rest is how I survive grief.

I miss her smile, holding her hand, changing her ostomy bags and hooking up her central line. I miss figuring out her meds and helping her get in and out of her wheelchair. I miss the smell of her hair and the way she looked at me from across the room. I miss seeing life through her eyes and watching her light up with joy when she saw anything with Disney. I miss getting all of the Frozen and Veggie Tales songs stuck in my head from listening to them all the live long day. I miss her spunk and blatant honesty. I miss—how I felt when I was with her.

Time does not heal.

But maybe….I don’t need healing.

Because I don’t want to ever stop feeling the pain of not having her here. Because it reminds me of just how much I loved—and even more so—the magnitude of the love I received when she was here.

Maybe I don’t need healing, but I do—need time. 🩷

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My husband, Paul, and I recently attended a celebration of life hosted by Nationwide Children’s Hospital for all of the palliative care patients who passed away within the last couple of years. It was so beautifully done. They held it at the art museum in downtown Columbus. It was surreal to see Rylie’s photos during the slideshow as each child was remembered, as I still find myself in shock that she is no longer with us. This journey of grief from such profound loss is....well, so many things. I tend to think time will help it feel a little lighter, but that has proven to be the opposite of the truth. I thought I could just take deep breaths and bravely walk through all of these feelings and make sense of it all somehow, but really it just wrecks me in the most unexpected ways. I feel as though I am holding this reality, this grief, in a large bag to the side. Like I know it is there and I know how big it is, but I do not have the energy or capacity to fully open it most of the time. And when I do finally reach a moment where I can fully accept and feel it, it is a pain so deep and so raw, that I feel as though I am being literally turned inside out. And yet, there is a sort of paradox—it seems the more deeply I feel, the more I find the goodness of God in it all….

With my daughter’s passing and my son simultaneously leaving for college I was left with a sudden void of responsibilities and purpose. My mind began to race and feel anxious about all of the unknowns of my future. But before I could even begin to posture myself into complete wallow mode in order to begin my downward spiral, there came a whisper of a potential job opportunity that seemed to align with my interests. But when I pulled up the full description of the position and list of qualifications, I laughed out loud at the idea that someone thought I could even be semi-qualified for such a position: assistant editor for a magazine. Now, some of you reading may be thinking that of course that sounds like the perfect position for me. But being the eternal pessimist realist that I am, all I could think about was how much I did not know how to use certain software and how my college degree (Cross—Cultural Studies) was nothing related to English or writing. But then I read the description again. And again. And AGAIN. SO many times. Because the more I read it, the more I realized how this was my dream job that had been posted. It sounded—fun?!? Because well, I love words. I love grammar. (Although I tend to just make up my own rules here sometimes…) I love editing my own work and helping others with their own letters and articles when I have the opportunity. I love the art of communication and have become so deeply passionate about it, in part because of how it has helped me heal and grow and learn through caregiving and motherhood. Advocating in various ways within the disabled community has helped me to realize the importance of the language we use when we write about people or to people. Even the simplest of sentences can have such a large impact if the right words are chosen. My excitement rapidly began to outweigh my pessimism realism, and so I sat down and spent a few hours one evening googling examples of resumes and then attempting to make my own resume and cover letter. Because, well—I have never had to have a resume. (No one really ever looks into your qualifications before you become a mother… And even more shockingly—when you are a caregiver without a nursing degree having to learn how to hook up IVs and feeding tubes and catheters!) And so, I submitted my resume feeling inspired and hopeful.

(Spoiler alert: I got the job.) And the amazing part wasn’t just the position itself—it was the provision within the actual job. Because the position was for the magazine produced by the C&MA (The Christian and Missionary Alliance) —the denomination where Paul is currently the director of Envision, one of the C&MA missions structures at their national office here in Reynoldsburg, just outside Columbus. It was his current job there that allowed us to move here three years ago when Rylie was having more frequent hospital stays at Nationwide Children’s Hospital. The position of assistant editor of Alliance Life magazine is in their development area of ministry. My desk is located merely one floor away from my husband’s current office. In fact, the entire building is a place where more faces are familiar to me than not. It is a place where a dear friend who also shares a love of all things words, will be one of several people I will be working side by side with on the magazine. It is a safe space, full of grace, where I am already loved and known, and where I also get to do the thing I love most—write.

The providence of this whole unfolding is not lost on me. The timing, the position, the place… And also—the irony that I could not do this job if Rylie was still here. And—I do not believe I could do this job had I never had her. I am capable to do this job largely in part because of what she taught me and because of everything I learned and grew to be because of her. And yet—I am only able to do this job because she is no longer here. It is a lot to process. But if I carefully reframe it all, it can become, “For such a time as this.” This job is no coincidence, but God’s provision. A new chapter. A gift.

Sometimes there are views so breathtaking and unique that make you pull your car over to take a picture. (Which, by the way, is not necessarily a frequent occasion in central Ohio.) And sometimes, those pictures can evoke feelings or an emotion that you know there must be some sort of meaningful word picture for…

On November 10th we woke up to snow on the ground. Snow in Ohio is not really shocking on its own, but snow that early in November, before the leaves have even fallen off of the trees kind of is! I was driving to a friend’s house that day when I saw the colorful trees around the pond and the snow highlighting it all in such a beautiful way, that I was compelled to stop and snap a few photos. That evening I went back to look at the photos I had taken to see if they had truly captured the beauty I witnessed. After only a little cropping this one seemed perfect all on its own, unfiltered.

In going back to look at the photo, I realized how even the grey clouds that are typically dreary and depressing, actually added a unique depth to the scene on that day. The scene as a whole felt like a word picture that was waiting to be discovered: beautiful trees in autumn at their peak colors and beauty, just before they fall to their death—dusted with a crisp, white, wintery snow that seemed to freeze the scene in time. Clouds, that on their own, are only grey and dreary. But here they allow the colors of the leaves and snow to become the center of the beauty. Beauty that exists because of the storm. The trees were beautiful all on their own, in the sun. But after a snow storm, and lingering clouds blocking the sun they became a new kind of beauty—in their persisting.

Writing has been really helpful and healing to me in this current season of deep grief. But I also hope it serves to bring more understanding to the unique grief of losing a child, while I search for words that provide hope. Because honestly there is really no surviving this kind of thing without hope. And this photo represents so much hope to me. It reminds me that there is beauty in every season. And perhaps even more beauty, in a collision of seasons.

I began my new job as assistant editor a couple of weeks ago and it has been fun to learn all the new things and figure out my rhythm there. But as I came home each day I began to feel a physical pull within my being. Like a sensation of being physically ripped apart. It sounds a bit morbid, but it is the only way I know how to explain it. I couldn’t escape it. It was demanding to be noticed and felt. A whole new layer of emotional processing was not something I anticipated. But as I sat in it I came to understand that the “pull” had to do with a part of me that figuratively died with Rylie. The part of my identity that was so much a part of who I was and that nearly dictated every facet of my life: caregiving. Leaving everyday to go to my new job has forced me to come to terms with the fact that I am officially no longer her caregiver. And maybe it is even causing me to fully face her absence somehow. To fully feel it. I did not see this one coming… just when you think your emotions cannot become more intense and consuming… It made me feel a lot of things: overwhelmed, exhausted, annoyed, and shocked, to name a few. I knew when I pulled over that day to take the picture full of seasonal charm by the pond that it deeply resonated with me somehow. It is the perfect word picture for my figurative collision of seasons.

Collisions are painful and messy. They are disorienting and unpredictable. Like a lot of things in life, I suppose. And in the chaos of collisions, it becomes difficult to tell the two colliding things apart. Two things combusting simultaneously, leaving only their wreckage behind. Being a logophile (or, “someone who loves words,” in case you wondered if that was an actual thing), I of course had to look up the exact definition of “collision.” Webster’s online dictionary defines it as: “an encounter between particles resulting in exchange or transformation of energy.” This makes it feel even more fitting. All of the years of caregiving that required me to be highly attuned to the needs of others, helped to develop a passionate, compelling energy in me to see overlooked individuals like Rylie. It has driven me to help be a voice for those who are not being heard. And though she is no longer here—all of the momentum I gained with her, remains in me. It is a fire within me that cannot be squelched. And I believe it will serve me well in this new role, as I get to funnel all of that energy into helping produce a magazine that is passionate about seeing people and communicating meaningful stories. It was a kind of job training in a way. A unique preparation for an amazing job opportunity that has given a kind of perspective that cannot just be taught—it has to be experienced. Although you could say that I truly I had the best teacher—Rylie.

However, this collision has been nothing short of excruciating and messy. I feel as though every facet of my being is being affected by this collision of seasons. So many emotions, changes, adjustments, and unknowns. And yet, I can’t help but continue to admire the unexpected beauty in the midst of it all. A sort of persisting beauty. My daughter forever in my mind, reminding me of how to love well and find joy in all the places. Even in my gut wrenching sobs I can almost audibly hear her say, “I’m sorry you’re sad Mommy. You okay?” Because that is what she used to say anytime she saw me cry.

I cry a lot these days. But I am realizing that many of these tears are merely my soul working out how to emerge from such a massive collision. And, they are helping to work out who I am becoming in the process. Over time I’m hopeful that I will be able to breathe a little easier as this collision begins to settle, and as I figure out how I am going to put myself back together with the wreckage. Pieces of me have been permanently lost or destroyed, and others are being repurposed. But Jesus is putting me back together again through redemption. Restoration. Hope. Hope that even while I can miss my daughter more than I thought possible, I can find ways to continue to honor her and the gifts she so graciously gave to me.

“Suffering has been stronger than all other teaching…. I have been bent and broken, but - I hope - into a better shape.”
― Charles Dickens, Great Expectations

I went to visit my son Hudson at college for the first time recently. He goes to a school 9 hours away from home so it is not a place where I can easily visit on the weekends. Paul happened to have a speaking engagement planned there and so of course I was going to take the opportunity to tag along! I decided to go down a few days before Paul to spend some extra time with Hudson to just be present with him and hopefully encourage him. He began his freshman year of college, only 3 days after sitting with his sister as she took her last breaths in the ICU. And while he has been doing well, he has also been having some difficult days emotionally as he tried to process and grieve her passing while adjusting to a new environment.

Now, I want to preface this by saying: I always assumed my kids would be embarrassed by me simply by existing as their mom. And even though neither of them has ever actually made me feel that way, I still have a tendency to consciously try to not embarrass them during specific situations (like this trip). But what happened, is that I showed up at Hudson’s school and he immediately began taking me all around campus, introducing me to so many people, and friends he has made since the beginning of the semester. And, not in a sheepish kind of way. He drug me all over that campus enthusiastically announcing to anyone he knew, “Hey, this is my mom!!” Even going to the effort of yelling at a friend he spotted way down a hill to get his attention to tell him that I was there. The next day I had the opportunity to proudly watch him as he helped lead worship on stage at chapel that morning. He insisted I sit on the front row and sat with me the remainder of chapel. Then I sat with him and his friends during the lunch hour where they gladly opened up their circle to me. Later in the coffee shop when he left the table for a few minutes, his friends continued to include me in conversation and we laughed a lot as they began educating me on some of the apps they use (ie. the poop map app—a socially interactive app for tracking where you poop. Yes, this is an actual thing).

Everywhere we went it was because he asked me to come with him and everyone we saw that he knew he was excited to introduce me to them. And several different friends, at different times, out of nowhere just began gushing to me how much they love Hudson and what an amazing, kind person he is—and then proceeded to speak encouraging words to me as his mom. *Cue tears* I mean—sheesh. I was so focused on coming to encourage my son while making sure I didn’t embarrass him, that I was completely blindsided by these students speaking words of exhortation over Hudson and myself. I was in complete awe of the acceptance and love and community there.

There was a special kind of kindness I experienced in those few days, and such an overwhelming sense of unconditional acceptance. It was such an unexpected gift. I went to make sure my son was okay, and to encourage his heart, and in return I feel as though I was encouraged ten-fold by him and his friends. I realized, he was proud of me—the mom who has spent most of her life fighting to feel comfortable in her own skin and to believe that she is “good enough.” He was proud…..of me. I think part of me did not even know how to respond and take it all in. It was so abundant, the love and acceptance I felt there by my son and his friends. And of course, to see my son feeling so seen and loved and accepted in this new chapter in his life so far away from home, filled my heart with SO much gratitude.

I came home full of joy in seeing him thrive, and it alleviated much of my selfish ache for him to be back home. Seeing him there and knowing it is exactly where he is supposed to be was like a balm to my mother’s heart. I was able to admire him for all of the ways he has continued to persevere and work through grief and healing. And I got to witness the example that he is to his friends as he holds both grief and joy.

The irony of it all, is that I would have never been able to make that trip if my daughter was still here. Especially since it was a trip that I was going on with Paul, we had no way of finding care for her extensive medical needs for such an extended trip. And there is a good chance she would even be in the midst of another hospital admission. She would still be here—but I would not have had such a profound experience of joy with my son. . .

My experience that week with my son will go down as one of my favorite, most meaningful memories of all time. For several reasons . . . one being that it was one of the most profound, powerful pictures of holding grief and joy simultaneously: in realizing that I could not have both experienced this visit with my son and still have my daughter here with us. How can I feel such amazing, devastating feelings all at once?!

My soul has been painfully split open. Pain sears through my heart. And I ache to depths I did not know were possible in grieving the loss of my daughter. I am split open and yet—here I still am. It is tempting to lie down and give up. It is easy to just look for ways to attempt to numb the pain to try to alleviate this anguish. But as last week proved, it can also be easy to just show up and allow joy to find you without forgetting your loss. And in fact, joy is somehow all the more powerful when found in the midst of such deep grief. Joy doesn’t have to be experienced in lieu of grief. In fact, I believe I have experienced such a joy because of my grief.

“. . . Though you do not now see him, you believe in him and rejoice with joy that is inexpressible and filled with glory. . .”
-1 Peter 1:8

If you know me, you know that writing has always been an outlet for me. It has been my therapy and my place of refuge. It is my place of processing and growth, and where I experience some of my deepest spiritual connections. But then my daughter died, and I suddenly lack the motivation to write or type. Then I begin to almost guilt myself in a way. That I should be writing because, well, that is what I do. And yet—I just don’t feel like it. Not like in a depressed kind of way. I almost feel stuck in time, like I am floating. My daughter died, my son left for college, my husband went back to work and I. . . am here. Staring at the wall, crying in her room, or wandering aimlessly around the house or at the grocery store. I feel. . . lost.

Last week in therapy I kept saying how confused I felt about it all. Mostly about the loss of my daughter. Never have I been at such a loss for words. “It is just confusing,” I say. And then my therapist asked the question, “What is that word doing for you?” *Silence. Staring off into space. . .* And then I realize that the word confusing is serving as a holder so-to-speak. Every time I say “This is just confusing,” in response to a question of wellbeing, it is actually my way of shelving it. Setting it aside. Keeping the door closed. And as an Enneagram 4 this is definitely not a typical response for me. I am always one to dive into feelings head first. In fact, my weakness can be struggling to reel in my deep feelings because if I am not careful they can begin to completely sink me. So to recognize that I am avoiding such an enormous feeling of grief was, well—confusing.

Rylie’s bedroom is right off of our living room. Not down the hall or around the corner. In fact, it is just a few steps from one of the couches and just to the left of the TV in our living room. There is a sign with her name on it hanging on her door, and because we cannot bear to change anything yet, we keep her door closed with her name strung across the top and see it all the live long day. Her room is so central in our house. We could leave the door open but Paul and I agree that being able to see everything in her room without her in it is more difficult at the moment than just keeping her door closed. In processing the word confusing and how I am using it to avoid feelings that need addressing, it is like keeping her bedroom door closed. The door has become a metaphor for my emotions and feeling everything related to her death.

The other day I was driving to the store, and thinking about this situation that is giving me writer’s block. And as I thought through my writing here and on her Facebook page that I keep updated, I began to realize something: when I would write, I would write with her and for her. I wrote to be a voice for her and the larger community of overlooked people and their caregivers. I wrote to bring awareness to our realities in hopes of encouraging others to not just see other people, but to look for them as well. And I wrote from a deeply personal place where I felt like God helped me sort out my thoughts as I wrote. It has always been such a profound spiritual experience for me. So now, she is gone and I think perhaps I just don’t know what to write without her. She guided me, encouraged me, and taught me. And she was such a large part of my own identity because I was also her primary caregiver. Much of my life for 20 years was literally spent taking care of her directly in in such extreme, complex ways that now it takes my breath away to look back and see all I was managing just to keep her alive and well. And so to go from that, to having nothing I am responsible for in such an intense way, has left me feeling lost. Was she my sole motivation for writing? Or is my silence just a temporary response to grieving such an enormous loss?

I have said multiple times over the years how my kids have changed my life. I do not recognize the person I was before they existed. I continue to feel undeserving of such amazing kids. They have been a large part of helping me with my own identity and experiencing true, unconditional love. With Rylie specifically, she has always been a comforting presence and I think I always looked to her to teach me how to suffer well and what true joy is. And I can see now that I actually leaned on her in a lot of ways. But the other morning as I was reflecting on my writer’s block, I had a feeling of her saying, “You are ready to do this on your own now.” As though it was time to take my figurative training wheels off.

Confidence has always been a struggle for me—believing in myself, owning my abilities, and figuring out my likes and dislikes. Writing has been a safe space for me because of how I can methodically read through something before it becomes publicly available. It gives me the time to sort and process what I want to say and get it to the place where I feel it is communicating clearly before clicking ‘Post.’ When I began writing it was out of a place of wanting to be heard but not feeling brave enough to be speak up. I was telling my experiences and where I was finding God in the everyday without the worry of being interrupted or feeling ignored. It was a healing place in making sense of my struggles, my extraordinary life circumstances, and my places of deep pain. It was my experiences as a mom and caregiver that pushed me to my limits in such a way that gave me a deep need to find a way to decompress and process. And as an internal processor this is why writing is so therapeutic for me. But because so much of my writing has revolved around my life as a caregiver and in the world of disabilities, I think I kind of feel like I lost my partner. My inspiration and drive towards advocacy feels somewhat blunted. Or—have I become so used to leaning on my experiences primarily with my daughter, that I haven’t had to fully have the courage to just write on my own? It sounds silly but I think now I am having to figure out if I trust my voice. For my whole life I have defaulted to being a follower. I have a self—effacing tendency to the point that I tend to sacrifice my own wants and desires in order to make sure everyone else is happy and/or to avoid conflict. I have often lacked the courage to fully appreciate myself and to embrace who I was created to be. Or to believe that my own voice has enough value and worth to stand on its own. I tend to want to check with someone to make sure whatever I am doing seems okay. Almost like I need a stamp of approval before submitting something or presenting something of mine into the world. My soul can feel so timid and small and unworthy. So I think I have struggled to type words since her passing because they feel even more so like my words. Maybe I’m lacking motivation because I’m struggling to be fully motivated to just be myself. My inner critic wants to suggest, “How would that benefit anyone?” in response to just being me. But maybe now, more than ever, is when I need to access all of the wisdom Rylie has gifted me with. Now is the time for me to practice living into the person she has helped shape me to be. My daughter may be physically gone, but her imprint forever remains on my soul. The changes in my heart and my outlook on life do not just reset because she is no longer here. Maybe now is the time for me to truly practice being valiant as she was. To live unapologetically, allowing myself freedom to be me. Perhaps it is—for such a time as this—to start a new chapter of my own becoming, whilst I continue to grieve the colossal void she has left behind.

I can keep going even though she is no longer here. Or —I can keep moving forward because she showed me how to live.

Rylie you were more than an inspiration to me. You were my daughter, my friend, my teacher, my cheerleader, and you always made me feel fully seen. You gave me courage to live into each day with open hands, and to be generous with my smile. Your steadfast grace never ceased to amaze me, and your openhearted hugs were the best. I do not want to keep writing without you. But I know I cannot stop writing just because you are no longer here. You left me with so many words left unsaid. So much you gave me in your brief time here with us. When you were here I had the privilege of writing about things in real time with you. And now that you are gone, I am feeling an overwhelming resolve to articulate to the world all of what you showed me. I hope I can bring honor to your legacy of unconditional love and joy. Your were a gift, and somehow even in your death, you continue to give. There is so much I want to go back and tell you. But for now I will bask in all of the beautiful gifts you left me with, to help me continue on, and strive to live well.

All of these years I was taking care of you—only now do I realize just how much you were taking care of me.

Saving Rylie’s eulogy here in my Substack. SO much more to say about Friday but for now– just gratitude. Overwhelmed by the number of people, near and far, who showed up to honor her life. What a blessing to see how many lives were impacted by Rylie’s. So thankful to the various people who showed up in various ways to help make it the most beautiful service and gathering afterwards that we could have asked for.❤️

*Tentative date for the Celebration of Life is September 20th*

Rylie lived as though pure joy coursed through her veins. She lived into who she was created to be, allowing nothing to dull the authentic joy that existed in her soul. She lived with more contentment than questions, more presence than worry. She anticipated the future but did not allow that anticipation to overshadow whatever was in the present. When you were with her- she was WITH you. For someone who the world often tragically overlooked, you always felt fully seen by her when in her presence. She welcomed anyone and everyone into her life and spoke to everyone as though they were known to her.

Her presence and light will be deeply missed, but we can only hope and pray that we can emit some of that light in remembering her example and life. For someone that the world may have seen as less than or UNable- she communicated more through her life and soul than anyone could with words. In fact it was so profound that no words exist to adequately express it, it could only be experienced.

She was a living picture of perseverance, determination, strength, courage, and love, all wrapped in perfect joy. A constant marvel and mystery to the medical world- she went out on her own terms, with her signature M.O. of stumping even the best of physicians. But really we know that the truth is that her body was tired. It had fought far more than most will ever experience in a lifetime. And while she had nearly accumulated every type of specialist to her care team, we find it no coincidence that the last one she added to her list was cardiology. Because it was her heart that ultimately sustained her these 20 years- both literally and figuratively. And for all she has been through, her heart finally got tired too. It was medically inexplicable why it tired so suddenly and rapidly these last few weeks, but when we think of all her body had been through it just made sense. She was just tired, and ready to rest.

Rylie's name means valiant, and valiant she was. And even in her death she taught us courage. Today we say goodbye, well done, rest in peace sweetheart. You deserve it.

We know her death will not overshadow her light. And we know that we can still carry her light within us. We can miss her, AND choose to keep on with all of the gifts she gave us so freely. We can all decide to live a life changed because of knowing her, while allowing ourselves grace to grieve losing her. And we can honor her life by remembering her example and allowing it to shape our own.

She was light. She was love. She was the best.

We let you go Rylie. Well done, queen.

“The light shines in the darkness, and the darkness has not overcome it.”
John 1:5

“But we have this treasure in jars of clay, to show that the surpassing power belongs to God and not to us.We are afflicted in every way, but not crushed; perplexed, but not driven to despair; persecuted, but not forsaken; struck down, but not destroyed; always carrying in the body the death of Jesus, so that the life of Jesus also may be manifested in our bodies.”
2 Corinthians 4:7-10

*Psalm 139:1-16*

On my way the other morning I was thinking that I would love to stop for an iced horchata, but I realized that at that time of morning there would likely be a very long line. But after leaving my house and miraculously getting all green lights, I approached the Starbucks and saw only one car in line. It was then that I knew it was my destiny to have that iced horchata. The one car in front of me gave me pause as they had their car packed full of helium smiley face balloons. Three of them were side by side, the width of their rear window, all smiling perfectly right side up at me as though they were willing me to be happy. SO many smiley face balloons…. Anyway, I got my iced half-caff horchata with one pump and asked for a straw (because what kind of lunatic wants to drink from those kinds of cups without a straw??) and proceeded to get through the most dreaded intersection with ease, hopping directly onto the interstate, to then have no one interfere with my pace in the the entirety of my time on I-70. It really got my attention-- all of this smiley face, green lit magic. It felt so unnaturally easy, like a giant sigh of relief. And, when I pulled into the hospital parking deck and saw that all the spaces were full, I circled around and there it was-- someone pulling out of the premier parking space. It was like the cement ceiling opened up and heavenly parking deck lights lit up the space that was so clearly assigned to me that day. The parking space that is so great that it is somehow even better than a handicap accessible one. It felt amazing.

And then, from the depths of my soul where my analogical thoughts lie, began to bubble up comparisons of that morning to my present life situation…

That morning it was a total breeze as I made my daily trek to the hospital downtown. So very easy to get to the place where my daughter was requiring hospital level care and observation. So easy to drive to the very place… that is presently causing life to feel more difficult and overwhelming. A place that has held so many traumatic moments and miracles. The place that brings conflicting feelings of dread and warmth. When you know the exhaustion about to ensue and that you get to see your hospital friends that help you feel so understood and known in the medically complex world. The place that exists as a primary reason for your exhaustion and one where you feel so safe and secure. That morning I was provided with great ease in getting to the hard place. As though I was being welcomed there. As though I would be met there in the hard place…

Our daughter Rylie spent most of 2024 in the hospital. Sometimes weeks at a time, and sometimes months. Her increasingly complex medical needs have caused her to need extra involved, intense medical involvement the last couple of years. We had previously been living in Cleveland for about 8 years with no anticipation of moving. We had already moved all her care to the childrens hospital in Columbus after realizing the difference in care from our local hospitals in Cleveland. A few years ago when she began having more frequent admissions to the hospital in Columbus two hours away, a series of very unexpected conversations and circumstances landed my husband a job just outside Columbus complete with the ideal home a mere 20 minutes from the hospital. We loved Cleveland. And we were committed to a continued 4 hour round trip for her to see her specialists and to have admissions two hours from home because we loved it that much. We could not fathom why we would ever leave a city so dear to our hearts. And so I have joked that we came here kicking and screaming, even as the Lord paved every step of the way to make the move as seamless as possible. My husband’s job opportunity and selling our Cleveland house after just 1 showing were just some of the many provisions that continued to confirm God’s leading (or dragging) us to Columbus.

We grieved a lot the first few months and couldn’t help but to question why God would seemingly rip us away from a city and people we loved so dearly. And then after about a year and a half after we moved here, Rylie began having more frequent and longer admissions clarifying part of why we needed to be here. And yet - I also couldn’t help think sarcastically, “Thanks God for making our suffering a little more convenient...”

We really are beyond grateful to not be living two hours from the hospital that provides her phenomenal medical care. But I couldn’t help but wonder, “Why couldn’t you just help her not need to go to the hospital so much?!?” Selfishly in those first few months after moving we would complain and grieve, and in our height of sadness one of us blurted out that it was like we all had to pick up and move our entire lives just for - Rylie. As though it was all about her. But later as I was processing it was as though God said, “What if it is all about her??” Well, that initially seemed unfair and frustrating, but then became equally enlightening. As though there was something he had for us to see, to learn, to grow in together as we rallied around our family member who needed the such specialized care and assistance. We felt like we had all made this enormous sacrifice in large so that she could get the absolute best medical care. But then I realized, we were also being cared for, being provided with some ease for our family to at least be closer together logistically when her needs became so much more demanding. Making our suffering…easier for us to bear??

I do not know all the answers to my questions. Especially the ‘whys’ that I am always tempted to ask. And I am not sure I will ever get specific answers. What I do know is that God has provided in ways for our family that I would not have chosen. I would have chosen complete relief from having to spend what is now literally half of our time or more, in the hospital. I have been is some really dark places mentally, and had some seriously despairing moments on more than one occasion. My faith is regularly being tested and I have to convince myself often that we are not cursed or being punished. Because at times I just cannot imagine any other reason why the things that happen, happen. And then how another thing can happen, and become even more difficult than the last time.

Writing pulls me up and out. That is what I always say. But it takes some serious discipline at times for me to just make myself sit and write the words. Maybe I am stubborn and even though I know how much it will help, I want more time to sulk in my dark place. Maybe it is me looking away and giving the silent treatment to God out of utter frustration in not getting my way. And sometimes, it is honestly just from the very literal exhaustion of it all. But when I do begin to write the words and make more sense of my thoughts, there is always a reoccurring thought when everything else in me wants to lie face down in defeat: “God has to be in this. He is here.” It just seems that it’s rarely in the ways I would like for him to be. He waits patiently for me to shake out all of my frustrations and disappointments. Every single time I surrender and look for him—he is there. Like an unexpected presence in smiley face balloons, horchata, and a green lit, premier parking space.

It doesn’t mean that then I can fully see and understand the full picture or behind the scenes. Or that I can know that in the future that I will look back and be grateful for how I saw him. I just means that he keeps whispering, moving. Gently shaping my heart through an often immensely painful set of circumstances—-if I let him. I do feel cornered sometimes, like where else could I possibly look except for up?? But honestly that is often right where I hear his voice the clearest.

There are times when I feel like I literally have nothing left. Empty of motivation and lacking hope. Feeling at the very least that I am just existing without any choices in mine or my family members’ lives. It is suffocating at times. But—

“What if it IS all about her?”

^“But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.”
(2 Corinthians 12:9-10)

Not because the world revolves around her, but because through her weakness the power of Jesus is known? What if there is something far more powerful at play in the midst of our suffering— because of our suffering? It sounds upside down but I pretty much feel upside down in this never ending season of life so I am beginning to think he has more for us in the upside down (not Stranger Things) than we are privy to. The hard things shake us up. Flip us upside down. Kick us around and push us in the corner. But what if the hard things that corner us, actually enable us see more clearly? What if the hard things are slowing us down and blocking our view of everything….except Jesus?

”For in this hope we were saved. But hope that is seen is no hope at all. Who hopes for what they already have? But if we hope for what we do not yet have, we wait for it patiently.” (Romans 8:24-25)

Hope in the things we canNOT see….

I have to have hope. Because absolutely nothing else makes any sense otherwise. If God’s love for us is everything scripture says it is, then there is where our hope lies. In love. In the knowing that love always prevails. In believing that love doesn’t just disappear when the impossible things are happening. Time and time again I have been challenged in my faith as we have lived witnessed and experienced more suffering and trauma and grief than I thought humanly possible.

^”I consider that our present sufferings are not worth comparing with the glory that will be revealed in us.” (Romans 8:18)

If our present sufferings are really not worth comparing to the glory that will one day be revealed in us because of said suffering…..well… I guess there will be some sort of serious glory so magnificent that my brain isn’t capable of imagining it. Because the last few years have been so hellacious to live through, challenging to put words to, and difficult to relate to anyone about. The last couple of years have been utterly exhausting in every sense of the word, and caused continued chaos in our home and family life. And so I am pausing and asking myself:

What if it is all about her, because it is actually all about HIM?

Because ‘his power is made perfect’ in our weaknesses. How many people have been affected by Rylie’s persistent joy whilst she’s in a hospital gown? How many people have learned more about hope and experienced Jesus through her sweet, persevering spirit? Her very existence, demeanor, and everything she endures along the way in the midst of her joy is a testimony. What if I am being challenged in my faith? Can I still believe when I feel like I cannot handle one. More. Thing? When I am walking around feeling like an empty robot, sleep deprived, and mentally exhausted without the ability to feel like I can fully rest in the midst of these times?!

And yet, maybe resting looks more like believing than napping sometimes. Maybe it feels more like immersing yourself in words of hope than taking a vacation day. Maybe resting… is choosing to believe, even when I don’t feel like it.

Maybe hoping is resting.

“…and what is the immeasurable greatness of his power toward us who believe, according to the working of his great might that he worked in Christ when he raised him from the dead…” (Ephesians 1:19-20)

It is the immeasurable greatness of his power toward us who believe, according to the working of his great might that he worked in Christ when he raised him from the dead. The same power that raised Christ from the dead is the same power to us who believe. Who hope….

What if it IS… all about Him?

“so that Christ may dwell in your hearts through faith—that you, being rooted and grounded in love, may have strength to comprehend with all the saints is the breadth and length and height and depth, and to know the love of Christ that surpasses knowledge, that you may be filled with all the fullness of God.” (Ephesians 3:18-19)

Graduation was nearly a month ago, and the party was a couple of weeks later. It isn’t that I haven’t had the time to post or share but it is like I just couldn’t sit down to write something. This was monumental, a shifting of seasons, a major milestone and yet… I cannot seem to figuratively pick up my foot to step into the next thing. I feel paralyzed by the moment and the millions of smaller moments surrounding the event. I see now that it has existed in my mind as more of an expiration date or finality of sorts until now. Graduation. The overly dramatic (is that redundant?) side of me throws myself on the ground as I mourn for all the ways my motherhood is surely over. And I simultaneously melt into all of the regretful, guilty feelings of all the ways I could have done better. “It’s too late,” I tell myself. “It’s over. What’s done is done.” My youngest turned 18 — becoming a legal adult and then two days later our home is filled with guests to celebrate completing this momentous occasion that serves to launch him into the rest of adulthood. It feels as though I am trying to gather handfuls of air to save something, to memorialize it, and to fully absorb it all. But it is all happening so quickly and my mind and emotions cannot keep up. They have dropped out of the race dehydrated and cramping trying to catch their breath. I am just being honest, although even as I write this my eyes widen at the absurdity that is my thought process. I am his mother. I always will be his mother. This is just life.

And so I am trying to sort out what it is about this season that has me so incredibly defeated and weepy and confused. (Other than my own beautiful, brutal season of perimenopause). It is, I believe, a lack of control. Unmet, unrealistic expectations. Being forced to let go of something before you feel ready, when ‘ready’ really means ‘perfect.’ I drown in the list of regrets and unfulfilled dreams for his childhood and my motherhood within it. Because I wanted to do this right. I wanted to be the best I could for him because I never wanted him to know the feeling of abandonment or to question his value. I never wanted him to feel unheard or unseen or unloved. I wanted to be more involved and present with him and less defeated by my own mental health struggles. It is almost as though I have attempted to hold him up as high as I could to keep him away from all the really painful, life altering situations and traumas. But no matter how far I kept him away, there was no escaping the pain and trauma that has existed within his life and our small family for most of the last 18 years. Ironic, isn’t it? I tried so very hard to keep him away from to insulate him from the hard things, and yet nothing was able to protect him from the things so completely beyond our control. And ironic because…it seems to me that those very things, are the things that have shaped him into who he now is - in the very best of ways.

I catch myself saying or thinking at times, “How is he my kid?” I feel so unworthy to be able to call myself his mom. Others comment on the amazing young man he is becoming and I feel as though I cannot take any of the credit. Despite the fact that myself and his dad were the primary people influencing his life these last 18 years. “It must be a fluke,” I think. I think it must be luck because there is no way I possibly had anything to do with raising such an amazing human. But when I reflect on his childhood and all of the times I messed up, or the uncontrollable circumstances he had to witness and live through because of his sister’s medical trauma and the resilience he has developed because of it — I realize I may not have been entirely responsible, but perhaps in my own determination to be a conduit of faith and to not give up, that there was more than enough grace from God to redeem what felt like utter losses and failures. Perhaps redefining my own expectations to be ‘doing the best I can do’ instead of whatever imaginative perfection I have concocted in my mind that is absolutely impossible to live up to. Perhaps I have to find enough grace for myself to not actually live in a constant state of “I could have done better.” And instead live in the moment and appreciate all of the unexpected ways his character has developed because of the wounds. To remember all of the ways I gave extra when I felt like I had none, in order to try to keep him feeling safe and loved and seen. To remember all of the sacrifices I have made to give him the best of whatever circumstance I could.

Most people seem to associate love with a feeling. An instant attraction or love at first sight. I believe there is something called ‘infatuation’ and then there is love. Infatuation being more of an emotional feeling about someone and love being more of a choice and action. Which is why you can like someone without loving them and you can love them without liking them. Many mothers describe seeing their babies for the first time and the instant connection and bonds felt. And it has been often that I have felt broken or different because I feel like I did not have similar experiences, assuming therefore something must be wrong with me…. While it probably had quite a bit to do with the fact that I was unable to hold either of my children or nurse them right after birth, and that they both spent their first weeks of life living in an isolette in a hospital ICU - I still always felt like I was different from other moms. I would consciously, purposefully (and still do) hug and express words of affection. Not because it is necessarily flowing out of me at that moment, but because I know they need that and I know that is loving. I have felt robotic at times and felt guilty that I have to remind myself to do things that seem to come so naturally for everyone else. But what if that is just a perfect example of love? Love is a verb. Often associated with a feeling - but not always. Sometimes a selfless act is the sole reflection of love in a moment. If love was easy, our world would be a whole lot happier and — I am convinced there would also be better drivers in the greater Columbus area…

And so to circle back around— I have literally worked and tried and fought so hard to love. Sometimes it felt natural but a lot of times it took effort. And in all of these years of loving my son I seemed to have subconsciously given myself a deadline: graduation. That somehow became the end all for all my efforts, in my mind. Get it right before graduation or it will be too late. He will leave for college and it will be over. But — love also looks like surrender and faith and hope that the Lord will sustain your child as they leave the nest. And knowing that the nest has a door that will always welcome them back. And that loving them is coming to terms with yourself and your lack of control and faith that God will continue to be present in their life even when you are not around. He will not be entirely alone. God is with him. In him. Sustaining and growing and leading him. And it will feel natural to him in the moment because after all - that isn’t it what he has witnessed me doing his entire life? Finding sustenance in Jesus, and growth despite all my mistakes and imperfections? Or rather - it is because of those things?...

Thank God for redemption. My son is the living definition of that word. Not because of everything I was able to protect him from- but because of everything I wasn’t able to protect him from. Severe bullying in middle school, ADHD, several major relocations and new schools, being the sibling of a chronically ill sister and all of the traumas he has lived through with her, and coping with the reality of knowing she may not be with us for as long as we hope for. He has tangible proof of the redeeming love of Christ in his life because of all the hard things I tried to keep him from experiencing.

So, maybe the next time I have annoying paperwork to fill out, and boxes to check how many adults and children in the home, I can with confidence and pride, check “4 adults.” Even if it does still make me a little lightheaded and nauseated. Just like everything else I have attempted and tried, I can also try to live in fulfillment for the humans we have kept alive and raised for all these years. I can feel proud of their accomplishments, and confident that just as God has been ever present with our family, he only continues to be present with our son as he ventures out on his own.

I am trying to… accept it all. That is the word that has come to mind recently. There have been a few things recently that have just felt hard to accept. Accepting my son leaving in August to go 520 miles, 9 hours and 28 minutes away to college. Accepting shattered realities with my other child who is medically complex and fragile. Accepting enormous changes that are to come to our family as a whole, whatever they may look like. But accepting isn’t dismissing or discounting any of these changes, it is choosing to move forward with hope. It is finding the strength within to trust in the goodness of God, even if it is found in the most unexpected of ways. Because it is not too late. Because, grace.

Jesus says, “I am near. God is good. My grace is sufficient for you🖤”

Acceptance takes courage. And sometimes it may simply look like:

One. Breath. At. A. Time.

In recognizing my disdain for this unexpected outcome, I realized I felt like I was pouting. There is a scene in the movie Paddington that my son and I will refer to sometimes and mimic. It is a scene where the dad gets upset and he dramatically looks away. His wife asks him what he is doing and he responds, “My looking away face.” That is how I feel. I am sitting with my arms crossed doing my “looking away face” from God. I feel empty, numb, and….I just don’t even know. How are you supposed to feel when such a blatant defeat is before you?! And yet, now as I reflect I admit I feel pressed to ask myself the question - Why was this defeat? It was defeat because I had already decided what the happy ending looked like. I had already determined the definition of victory. I had already imagined what the light at the end of the tunnel was illuminating. And if this is true, I guess I am doing my ‘looking away face’ at God because he did not allow the happy ending I wanted. He did not intervene the way I thought he should. My desperation for completeness, triumph, and ease ultimately caused me to start looking the other direction. Fisted dreams and holding onto my desires because my soul felt like it just could not bear anymore heartache, perpetual exhaustion, and immovable grief. I didn’t recognize that out of desperation my mind took over to focus solely on a conclusion to an oh-so-weary season of life.

I began looking away when I decided to only focus on a happy ending, which ultimately left me looking away from God in frustration with my shattered, close-minded expectations.

Usually we are complaining about how others tend to ask how we are doing at times with an expectation that things are getting better. It is difficult for people to accept the open ended hospital stay, chronic illness, and permanent disabilities. It seems natural for us all to default to focus on where and when the happy ending will be. An ending signifies the time for a new beginning. An ending is a conclusion. And a happy ending means that no matter what you hardships you went through, you encounter something amazing at the end. It is closure. Bruised and battered perhaps, but you still made it to the other side, being able to look back on what was and no longer is, as you step forward into a beautiful new beginning. Beauty from ashes. It’s biblical, right?…

I have recently been stuck on Hebrews. And as I have cried and pouted and looked away I felt the pull to still open Hebrews and read. And as I read through chapter 4 I got stuck on verse 16.

“Let us then with confidence draw near to the throne of grace, that we may receive mercy and find grace to help in time of need.”

Mercy and grace. And asking with confidence meaning I fully believe that God will provide it. I need mercy and grace. Non of this outcome has felt merciful or graceful. The exact opposite in fact. So now I am pleading for it all the more, because now I feel like I honestly don’t even know what else to pray or ask for right now. Because a few weeks ago I thought God hearing our desperate cries for healing, was responding with my happy ending. And I thought right- he did and he does hear our pleading for healing for our daughter’s broken body. But now sans my happy ending I am having to figure out if I am willing to still choose dark faith, and believe that he is still sovereign. And to believe that when my human mind cannot seem to make sense of the utter chaos in my life that is completely out of my control, that he is still here.

And I suppose… it all depends on where I am looking…

I don’t know what is right but all I have left is to just be.

Choices have been stripped from me and I can hardly control anything. What is left is survival. But is there a right way to survive? This is wasted energy to ask this question it seems. You just… survive. You exist. And you wait and watch for what will happen next. I have a million questions, but many of them are just wasting energy and draining what little capacity I have. Because I don’t know when this season will end. I don’t know if the suffering will ever cease. I don’t know—why.

I don’t know what is the right way to do this, but I can look at what is left.

My grit, determination, and will to survive is still here. Hope. There is my perseverance and strength to get up the next day without knowing if it will be any different than the last. Hope. I have belief that there really is something bigger at work that I cannot see. Hope. And I can have faith that when nothing feels right, I can give what I have left. Hope.

Hope is all that is left.

What is right, and what is left? I hope by showing up with grit and choosing to persevere, it will allow me to let go of my need to know: my need to know what is right, why this is, and if it will end. I can know hope, and hope helps me to sit in the unknowing. I hope in what I cannot see. I hope because I cannot see. Hope is having faith it can co-exist peacefully with the unknown. Faith is believing that the unknowns remain unknown for a reason, and as much as I want to know - perhaps there is a goodness if I don’t. A goodness that perhaps I would never know if I knew what I wished to know.

I know hope is right. I know faith is good.

And I know for now- it’s okay if that is all I have left.

He waits, I try
He waits, I wonder
He waits, I just want to know why

Is he in the waiting
Can hope be found there
Where time seems suspended in this storm?

Has he turned his back
Has he forgotten me
Did he give up on my wavering heart?

I squint, I try
I want to see
I want to believe he is near

But it feels like he’s just - waiting
And wants me to wait too
It feels cruel, and harsh, and unfair

Am I deserving of this place of sorrow
Is this pain just my cross to bear
Is it consequences for my actions
Or lack of hope, too much despair?

I try for words
I want to pray
I want to believe in sovereignty and love

But this place, this barren desert
My soul can hardly bear

Here he waits, but he still sees
He waits, I cry, I beg
He waits, I wonder where he is
He waits, without giving reasons why

I try to wait with him
I try to see what is unseen.
I try to have the courage
When waiting seems to have no end…

If waiting is love
If God is love
And love, never fails-

If waiting is love
If love is believing
Bearing and enduring all things-

Then, is this love in the waiting?
Is he waiting because he loves?
And if love is in this waiting-
Is this where I find resolve?

He waits, he loves
He waits, he sees
He waits, he loves-
He IS.
LOVE.

I look up to this - a smile so pure. Joy incarnate. JOY in this place. JOY right after that place. JOY in this moment. I cannot fully understand where her joy comes from, how she so easily produces it, so freely. She is here, in the moment. Enjoying the things she can enjoy now. All day I sit trying to find something to fill time, to bring my mind and heart some solace. To drag me away from the tornado that my emotions cannot seem to resolve. And all day every time I look up this is what I see. Her relentless joy and content spirit, and deep love for us just being here with her. She doesn’t seem to process and recover from things the way I do. She seems to simplify it all in a way that makes me think there is something good in this place. No matter the depths of sadness I’m feeling, or how much I reel from the intensity of it all - SHE is good. Her smile is the only good thing I can find right now, the only thing that can penetrate my pain. It doesn’t alleviate the pain, but brings some awe and beauty into the midst of it. And it causes me to feel a tension so strong between wanting to fully appreciate the gift of witnessing pure joy, and the very fresh critical wounds that have devastated my soul. But maybe the full appreciation of joy is only felt when the pain has not subsided. Perhaps appreciating and finding joy in the midst of pain has a more powerful effect than experiencing joy all on its own…

I have felt reluctant to let go of any of my grief and sorrow. Like I want justice and acknowledgement and understanding and answers before I can just ‘move on.’ But her smile, her joy is like a gentle quiet communication. It isn’t forcing me to stop crying. It doesn’t shame me for feeling what I feel. It isn’t saying its okay, or we need to move on. It just is. It is joy. It is here in this place where I mostly feel I will never fully recover from. It is here with me as I weep for what was and what will come. Joy is here in this place. And she fully embodies it in a way that makes it impossible to deny there is a God. Her smile is quiet, yet communicates louder than any words ever could. Because it is authentic, transparent, real. It just is. JOY, is in this place….

Joy is a gift…wrapped with my sorrow.

I don’t want to be here.
Jesus wept.

The unknowns become fears
The feelings I don’t know how to feel
Jesus wept.

My soul aches
My body grieves
I haven’t been here before
Jesus wept.

It feels like too much
I have no tears left to cry
Jesus wept.

Anticipatory sorrow
The weight of grief
Breaking of my soul
Jesus wept.

All of the what ifs
Attempting to find sense
Utterly no control
Jesus wept.

My mind searching for absolutes
My body feeling familiar trauma
The tension between my emotions
Jesus wept.

Where is the purpose
What good is there here
How can this possibly be under your hand
Jesus wept.

Your presence is near
Your miracles evident
Yet relief is not something we yet feel
Jesus wept.

I can’t not believe you are seeing it all
I can’t not believe in your sovereignty
But my shattered soul longs for reprieve
Jesus wept.

Where are you
Jesus wept.

Where are you
Jesus wept.

I cannot find the things you promised would be good
My capacity for living in these unknown spaces wears thin
Depths of grief I can never unfeel
Jesus wept.

I do not know how to be here
I do not know how to survive this anguish in my soul
Jesus wept.
In this moment all I do know for sure is-
Jesus weeps.

My heart is weary
Jesus weeps.
My body feels the pain of my bruised soul
Jesus weeps.
Despair tries to creep in
Jesus weeps.
All feels dark, hope feels scarce
My feelings too big to discern
Jesus weeps.
I feel isolated
Jesus weeps.
I don’t know, I can’t see…

But, Jesus weeps.
Hope can survive.❤️

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What is grief? I have reflected on this a lot lately as I have been in a really intense season of grief. And reflecting on its relation to strength. Is it the opposite of strength? Does it require strength? Does it build strength? Do we embody grief? Is it just deep sadness from loss?

We know that grief is what we experience from a loss. It a fog in your soul. An invisible wall between what you felt before the thing that caused your grief, and after. Grief is like the yearning to dissolve the wall, but the deeper the wound, the larger the trauma, the greater the loss - the less apt you are to find a way to completely dissolve this separation between who you were and who you are now. It isn’t like a personality disorder, but more so a testament to our human fragility, and depth. A reminder that “Life is pain, highness,” as the man in black said in The Princess Bride.

I have caught myself saying to a couple of people recently, “I will never get over it,” when referring to the most recent traumatic events I have lived through with our daughter. I dont know if you can just get over watching your child nearly die right in front of you as you stand helplessly, while a room full of hospital staff working frantically to save them. And not just this experience in and of itself, but sandwiched between other hospital stays and other devastating realities that exist with us now… These weeks and months have been too much to fully take in and process and…..grieve. And yet, my entire being has made itself very clear that I will in fact not just get over it. It has forced it’s way into my soul, demanding to take up space. It will not be ignored. I can fight it or I can submit to it and the ways it colors all the things around me and within my existence. Some may say you shouldn’t sit in your grief for too long. But I would say - don’t ignore the grief and continue to attempt to just push past it. Because grief cannot just be pushed past. It is within, and ignoring it will only cause it to present in other ways like resentment, bitterness, and depression. Grief needs to be gone through, not pushed past. Lived in, not ran from. It is also a portal to feeling deeper than you have before, and knowing empathy in a way you had not before. It stretches you. Grief is the quake that cracks open the protection we have attempted to pad our souls with. Craters of human pain we never wanted to feel, that remind us just how vulnerable we are. And just how broken the world really is. And just how fragile we are in our souls and bodies and minds and emotions.

For reasons that I have not yet discovered, I have realized that I continue to subconsciously make assumptions about things and how they will not happen. “That would never happen to me,” I will think. Or, “I know that I could never live though that like other people have had to do…”. “I literally do not think I could bear it.” And then, it happens. I am shocked and surprised, a confirmation of just how ignorant I was living. Perhaps it is because I feel like it is so unfair? Haven’t I been through enough? At times it feels like a personal attack. Or a punishment. And yet, I think really it is just that some of us end up experiencing human pain in ways we could have never imagined. Pains that cannot accurately be described or discussed…they are only known, by those experiencing them.

Grief can be isolating, but it doesn’t have to be. It is isolating because those who do not understand it are often not all that willing to sit in it with you. It is difficult to be free to feel and process without feeling like a burden. And if you have ever lived through the rejection of someone dismissing your pain or causing you to feel like you are just ‘too much,’ you know why it becomes even more scary to attempt to share it with anyone again. Grief is sacred. Loss and pain and and the tears that come with them are sacred. And being made to feel as though you should ‘get over it’ or that your feelings are not welcome can feel like a violation of these sacred places in our souls. This is why I believe so many of us do feel like we need to just ‘get over it.’ Because we have searched but cannot find the safe places and people to walk with us in our grief. To be with us in our grief. And unfortunately, other’s discomfort often dictates our own emotional health…

I want to talk more about grief. I want to hear more stories from the hard places, and the devastating pains experienced. I want us to all begin to feel okay with not feeling comfortable and choosing presence over comfort. I don’t want to be told how strong I am or how God only gives us what we can handle. I know how strong I am, because I have been forced to be. Telling someone they are strong because of the trauma they have experienced is not really encouraging. It is like telling me my shirt is blue if my shirt is blue. It is a fact. It isn’t affirming. Being heard and acknowledged is affirming.

None of us are immune to pain. Pain cannot be outrun or avoided. And if pain is not avoidable in our lives, why do we tend to avoid speaking about it? If pain is a universal human experience, shouldn’t we all be discussing it everyday life? What are we so afraid of? If we cannot bear to grieve through the pain and sit in the pain with each other, we miss out on the opportunities to experience deeper, authentic relationships with each other.

I am strong. But I am also weary. And grieving. I can be all of these things.

Can you be with me?

Can we all be with each other?

Life is meant to be shared in all of its experiences. Perhaps especially in the most painful ones.

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Grief is most often associated with death. It is a feeling associated with unwanted change involving loss. In terms of seasons, autumn is basically change and death amidst beauty. It is my favorite season and happens to be the time of year I get to celebrate my birthday. I have personally had to walk through so much grief over various great losses throughout my life. Yet, I can say I have undeniably found beauty between the lines of shattered dreams and losses.

Autumn equinox appears and darkness begins to outlast the light during the days. We do not get to see the sun as much as we experience the absence of it, as we enter into the quieter months of the year. And yet to be so much about death and darkness, autumn is arguably the most beautiful seasons in many areas of the world. And, it is something you do not have to try hard to appreciate. Even in the midst of trees losing their foliage in death, you just appreciate the changing leaves and recognize their beauty in the vibrant changing of their colors. But what about other forms of death in our lives? Is it possible to find beauty in death of other things? Death of a dream, death of an ability, death of a loved one? How is there anything lovely about the demise of any one of these?

Beauty is there, it is emerging, it is waiting to be found. But these things are more difficult to find if one is not actually looking for it... 

If you find yourself imploding with the pain of a great loss, it will indeed take deep faith to find the beauty. This doesn’t mean we stop feeling, or that we do not allow ourselves space to grieve, it just means that the chasm of grief we feel deep in our souls is not the end of the story. At least it doesn’t have to be. The chasm will find something to be filled with, no doubt. But it is up to us what we fill it with. Our choices are ultimately narrowed to despair or hope. And the latter of these is the one that will take the greatest strength and faith to find.  

Hebrews 11:1-2 says, 
"Now faith is the assurance of things hoped for, the conviction of things not seen. For by it the people of old received their commendation."

Grief feels heavy and dark. Abrupt, unimaginable losses can leave you feeling an ache in your soul, a feeling of gasping for air - yet no amount alleviates the anguish of depravity. In the dark it feels like there is little to see, little to look forward to. And yet the darkness is exactly where the deepest strength within us can emerge and decide if we will in fact be convinced that there is still hope. It is faith forged deep in our souls, that resolves hope is how you will move forward. That there truly is hope. It is there with you in the darkness, a future promise that you will be able to look back on this season and be encouraged by how God was present with you (commendation), and what you could see in the dark. And in future seasons of darkness, encouragement will come by a remembering of the strength of faith you had that gave way to hope in the blackest night.

I know the dark. I know it all too well. And over time I have come to be able to embrace it more, as I recognize the ways it has brought that much more brilliance to things in my life that I have not always seen as redemptive. 

Faith is not allowing a why without an answer to cause you to despair. Faith is focusing on the tiny breaths of hope in the stillness, when you still feel like you are gasping in grief. Faith is a resolving of your heart, a knowing that no matter what, there will be good and beauty that you will be able to eventually see. Faith is believing that -
“If I say, “Surely the darkness shall cover me, and the light about me be night," even the darkness is not dark to you; the night is as bright as the day, for darkness is as light with you." (Psalm 139: 11-12)

For we are known by a loving God who knows our pain. We are seen by a gracious Father who is with us in our grief. And we are loved so deeply that even when he allows our greatest pain, we can cling to faith that there is hope that he redeems, and brings light, and makes all of it good in his own time. And in his own way. 

Hospital stays are difficult to describe unless you have lived it. I have laughed in the past when I realized people have thought it was similar to staying in a hotel room. It is more like a prison cell, but without the lock on the door. Instead, people are allowed to come and go freely at ALL hours of the day AND night. It is not just a nurse caring for a patient. There is also the PCA that comes in every 2-4 hours to empty drain bags and take vitals. If you are on respiratory treatments those are scheduled every 4 hours on a different 4 hour schedule. The cleaning lady comes whatever time she can during the day. And then there are the floor doctors, a surgeon perhaps, occasional social worker, and what feels like 17 other kinds of people that come and go as they please. Often asking question, after question, after question. You have no control over any of the things. You are at the mercy of everyone else’s schedule and whatever ‘schedule’ they are on so there is no predicting what time someone may be by except for med administration 3 times a day. Or in my daughter’s case this stay, I believe 5 or 6 times a day. The bathroom in the room doesn’t even have a lock so showering and toileting are at your own risk of privacy and hopefully you have no shame…. But one thing I learned about hospital stays a few stays back is that fun bandaids can make a difference. So every hospital admission now, we buy a box of fun bandaids because in this children’s hospital for some reason all they have are these yellow Tweety Bird bandaids. My daughter has no interest with those. I hide the Tweety bandaids and replace them with the fun ones in the drawer so there is no mistake of which ones nurses will use. “Death to the Tweety bandaids,” I think angrily….. Stupid yellow. What kid even watches Looney Tunes anymore?!?...... 

A few weeks ago I wasn't around early morning but when I came to her room at the hospital she was crying hysterically and yelling something. The nurse was there and having a difficult time understanding her. I found out they had just done a finger stick for labs and they thought it scared her or hurt really bad. But I finally calmed her enough to understand her to say “princess” with big tears in her eyes. She was trying to make sure they used a princess bandaid (a fun bandaid) as opposed to those darn Tweety bird bandaids. “No no yellow,” she said. I looked and they had in fact used the princess bandaid, but because of her spasticity she couldn't bring her hand around to see for herself. After reassuring her, she calmed down instantly. It was then that I realized the importance of the fun bandaids. And, it was just last night in Kroger that I recognized their significance…

It isn’t just that my daughter hates Tweety bird so much, you see. It is much deeper than that. Fun bandaids represent a little control and freedom. Something fun and happy in the midst of really painful and difficult circumstances. They have become a comfort of sorts to her. And, also to me I suppose. It feels like some sort of liberation and retribution? Revenge on the Tweety bird bandaids?.......

The bandaids are also though, a word picture that I see. They don’t take the pain away or stop you from feeling. They don’t make you forget. They merely provide a little comfort to your overall painful situation. People who reach out to others going through painful life circumstances are kind of like human bandaids. They cannot provide instant healing or take away the pain. But they can exist as a comfort in providing support in tangible ways or by simply being present in your story of pain and suffering. Bandaids act as a sort of protection, but also a comfort. They are just there. Not doing much else other than just ‘sticking’ around. That is their job. Their function. To stick around IN and during the pain, providing a little protection. I wish more people were like bandaids…

Because of the disabilities and complex medical needs that our daughter experiences, we live in a pretty constant state of underlying discomfort and stress both in and out of the hospital. Yet also, we have formed some of the most meaningful and beautiful relationships with families because of it all. People we may have never been friends with had it not been for our similar circumstances in life. And it is in these relationships and conversations within them that I have noticed a common thread throughout: A lack of human bandaids, so-to-speak. We are often put in awkward positions of conversations where people mean well, but can end up hurting us even more. Attempting to ‘fix’ our difficult circumstances or deflecting. Avoiding asking us questions that may result in an uncomfortable answer to them. Ignorant comments dismissive of our feelings, and making assumptions. SO many assumptions…. Or just overlooking and/or avoiding our families altogether. The common theme I hear among other people and parents involved with those with disabilities is how they just want to be included. Seen. Heard. CARED for. There is a whole lot of ignorance at times from people on the outside. Ignorance that could be remedied by: presence. Asking good questions. And being willing to lean into the discomfort that families like ours are living daily. 

I often give the example or word picture when talking about those in chronic illness or permanent disability situations: If you were walking on the lake shore and saw someone out in the lake thrashing around and drowning, what would you do? Would you just keep walking and pretend you didn't see them? I like to think that most any human being with any sense and spec of compassion would act immediately in SOME way. At the very least they would call 911 if they were physically unable to rescue them themselves. Or recruit others to help. You would do something. And that is what I feel like it should be with all of us who are figuratively drowning. And yet it so often just feels as though the whole world is walking by pretending they don’t see us gasping for air, exhausted from just trying to stay above water. 

In our extra difficult seasons when our daughter is in and out of the hospital frequently we are so grateful for those who reach out as ‘bandaids.’ Bringing meals, coffee, helping with extra costs, or even things like letting our dog out when we are not able to be home. Bandaids. These acts of kindness and provision do not fix our pain. They don’t make it go away. But they provide us with some much appreciated comfort and feelings of being seen when we are beyond exhausted, battling discouragement and loneliness. These ‘bandaids’ are reminders that even though these seasons can feel incredibly isolating, that people are still choosing to see. Choosing to do something. Choosing to ‘stick’ around, and be present with us.❤️

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