If you follow me on social media, you may have read about Ceorl. Ceorl is an old, weathered tree I came across years ago while walking on a favorite trail close to the Little Miami River. I love him in all seasons, but I have always loved him best in the winter when he is most exposed. I can see all of his twisted branches, and every stick that is part of his bent and bowed being. I have a framed photo of him in all his bare winter glory, hanging in my family room. I have felt life and wisdom and lessons and whispers of love from God seep into my heart when I stood beneath this tree, and I named him Ceorl (prounounced CHA-orl) because in the Old English poem “Beowulf,” the word ceorl is used to mean “wise, old man.”

More on this tree in a minute.

My life is very much in a season of change just now. So many aspects of it are changing almost faster than I can keep up with. And many of these changes seem sad and bad.

It’s clear now that, barring a miracle, my health will never return to what it was before my bout with Covid two years and seven months ago. My day-to-day life has greatly changed due to the damage that the mild case I contracted that cold February 14, in 2023, caused to my body and to my heart. Damage that no one understands yet, during these still-early post-Covid years. Damage there is no cure for. I can no longer do so many things I love to do.

Our older kids are off on their own adventures now, searching for their own paths in life. They are doing this with varying degrees of beauty as some follow God’s ways, and some choose not to. Some of their choices have affected relationships and some have broken our hearts and the hearts of their siblings, but they are their choices to make now. Mother Teresa once said: “God did not call me to be successful. He called me to be faithful.” Like so many other parents we know, we have made many mistakes, but we have done our very best to remain faithful throughout our parenting journey, and we have had to face that we must let go of the “finished” picture we had hoped for. My parenting of most of my children has greatly changed now, although we do still have a few younger ones we will continue to parent to adulthood for a few more years. But we understand better than ever now that the “success” of those children’s completed pictures, just like all the ones who went before them, is out of our hands, no matter how much we may want to pour our love and dreams into them. And they, like we, are still works in progress. I can leave them safely in God’s hands as he continues to do His work in their hearts and minds, teaching them through their mistakes and bad choices and eventually, in His time, please God, bringing beauty from ashes.

Our ministry, The Shepherd’s Crook Orphan Ministry, has been forced to all but fold, drastically reducing the work the passion in our hearts longed to keep doing until we left this world, and cutting our salary in half, resulting in even greater dependence on God for every aspect of our daily provision. Our work and financial situation have greatly changed.

I even had to totally change how I homeschool these last few kids through their final years of school, after doing it basically the same way for the past thirty-three years. My health and the limitations on each of my days have forced me to find a better way to meet both their and my own needs.

I sometimes feel like I no longer even know who I am. 

Change can be good. Often, it can be great! But so much change all at the same time, especially change that we didn’t choose and would never have chosen if it had been up to us, can leave us feeling disoriented and lost and like all of life is suddenly out of our control. Maybe even sometimes wondering, “what has this all been about anyway?!”

God has been doing a lot of inside-of-me work over the past year or so as I have been trying to process and accept all of this. Trying to learn how to live in all of these new ways and embrace unwanted and unforeseen changes as they come.

Recently, I stepped out onto my front porch early one afternoon and spotted a white moth resting on the white vinyl siding of our house. It was breathtaking and one of the most calming and beautiful things I’ve ever seen. I wanted to just stand there on my front porch and look at it forever. I was mesmerized by it and wanted to take photo after photo, trying in vain to capture all of its amazingness. Later, I started to wonder what kind of moth it was, so I did a little research. My best guess is that it was most likely a Virginia tiger moth, and it’s pretty rare to see them. I also read the following information that I tucked away into the little parts of me that are trying to process all of these changes:

“If you ever have seen a white moth, you must have been amazed at the rarity of it, but also at the sweet presence of nature it carries with it. Very often, the wonder you experience when you encounter one comes with a feeling of peace. White moths encourage you to embrace change and face life’s difficulties as a part of your transformational journey.“

Apparently many cultures traditionally agree that the appearance of a white moth indicates transformation and new beginnings as reminders to embrace change.

God does often use nature to speak to our hearts and encourage us, so this was a little food for thought for me. And honestly, I fell in love with this moth.

Two days later, since the weather had suddenly cooled off dramatically, I was back on my beloved trail and looking forward to standing beneath my Ceorl tree again for a few minutes. As I neared the spot I have memorized so well, I gasped when I saw him lying on the ground, still hauntingly majestic, but now clearly dying. The most recent summer storm had pulled him up by the roots, toppled him, and left him to return to the earth he had sprouted from who knows how many years ago. What a tremendous crash that must’ve been when it happened! He must’ve shaken the world as he fell, declaring that things would never, ever be quite the same again in this little spot in the woods.

Scott and I stood side by side in silence. Then we quietly snapped a few photos and recorded this short video. I tried to find words to express what I was feeling. There was sadness for sure, but it was a peaceful sadness. More like what you feel when you finish the most amazing book you’ve ever read, close it, and then just sigh deeply and sit with it for awhile, missing it. It felt kind of like that. Like a chapter had just ended, but like it was time for it to. Time to turn and walk on now into the next great adventure.

And suddenly, I remembered my white moth. God was indeed trying to help me hear an important message. Change. Transformation. New beginnings. It was time. Time to release this long grieving process and make way for new things.

The next morning, as I sat with my book, Watching for the Morning by Vaneetha Risner, a woman who knows the heartbreak of unwanted change to a life that she thought was pretty well planned out, this was my reading for the day:

“Remember not the former things,
    nor consider the things of old.
 Behold, I am doing a new thing;
    now it springs forth, do you not perceive it?
I will make a way in the wilderness
    and rivers in the desert.“
Isaiah 43:18-19

“While I am convinced I’m living out God’s best for me, there are days I mourn what used to be . . . memories of a life that no longer exists. How do we get past the disappointment of losing a precious part of our life? When we verbalize it, and what it’s attached to, the sadness loses some of its grip. The things we love will always be a part of us, but their loss doesn’t have to devastate us or define us. Embracing means gladly receiving and even welcoming whatever the Lord gives me, even when it wasn’t in my plans. It means being fully present, living in the now, finding joy in the moment, and not constantly longing for what was in the past. God told his people not to remember the past because He was making a new way in the wilderness. While we may always remember what we’ve lost, we can be sure God is making a way in the wilderness and rivers in the desert. Lean into His work and embrace it. Trust that God is dong something beautiful.”

One of my favorite historical women of faith, Amy Carmichael, broke her leg so badly that she spent the rest of her life bedridden and in pain. During this suffering, she wrote a poem called In Acceptance Lieth Peace, in which she described the futility of the many ways we often try to deal with loss — forgetting the precious thing(s) we’ve lost, trying to stay so busy we don’t think about the loss, shutting ourselves off from living and giving up. Then she closes with this verse:

He said, “I will accept the breaking sorrow
Which God to-morrow
Will to His son explain.”
Then did the turmoil deep within him cease.
Not vain the word, not vain;
For in Acceptance lieth peace.

God is bringing me along this path to a place of Acceptance and peace and the embracing of all He still has ahead for me, in spite of how it may look right now. And He uses other people and so many aspects of nature in His beautiful world to whisper this guidance to my weeping heart. To think of Him, the Creator of all, taking time to place a white moth on my front porch wall, and to lead me to this tree filled with so many lessons through the years! Such a merciful and loving Father we have watching over us. He cares so much for us and so much about the things that cause the tears to roll down our cheeks and the cracks in our hearts.

“For many days neither sun nor stars appeared, and the severe storm kept raging. Finally all hope was fading that we would be saved.”
Acts 27:20

“. . . At that point, they could only see part of the picture. The part they were living at the time. That’s all they had. [But the] story wasn’t over yet. God was not finished. God does miraculous things. Even when all hope seems lost.” ~ Vaneetha Risner, Watching for the Morning

My beloved orchid just very suddenly and prematurely dropped it’s full and healthy blooms yesterday in, as my mother would say, “one fell swoop.” I’m not sure why, but it was almost as if they just got tired of holding on, and then let go. All of them at once. I can understand that feeling. The leaves also don’t look so great suddenly, though, so I’m not sure what caused this. Whatever the reason, it’s bare now and looks sad. Maybe it will come back eventually. It has before, so there is reason to hope.

Four days from now, our family medical insurance policy will end.

Since we have had to cut our small non-profit back almost to nothing, let our staff go, and reduce our work to only a small attempt at continuing to help orphans, Scott’s already-small salary has now been cut in half.

Almost 2 1/2 years into my recovery from Covid-induced heart failure, I am, at this moment, barely improved from where I was at my worst, thanks to the unbearable heat and humidity this summer — in spite of an intense recovery plan involving multiple rehabs and a new trial on an experimental drug treatment that is, so far, only causing worse fatigue, drowsiness, and terrible nausea as I gradually titrate up to the full dose. I’m running daily fevers again and suffering from flu-like symptoms almost constantly, on top of struggling to breathe and even walk short distances, due to weakness and poor balance, and a dysfunctional diaphragm.

Saturday night (last night), I finally managed to drag myself in and out of the shower before climbing into bed, wondering why the house was feeling so hot. Scott — while juggling about a million things for the kids’ bedtime routines without my help at all — did a quick check and determined that the AC unit in the 30-year-old part of the house wasn’t cooling at all. The fan was running, but there was no cold air. Thankfully, the unit in the 13-year-old addition seemed to be working fine, so he went about waking kids and moving people around to fit everyone into spaces in the cooler part of the house, then texted our favorite repairman who has been caring for our heating and AC needs for years. Our repairman replied right away, saying that he would come first thing the next morning, even though it was a Sunday, and instructed Scott to turn that unit off completely.

Since we had just determined that we didn’t have enough money to order groceries for the coming week, we had no idea how we would pay for a service call, much less a possibly expensive repair. So we prayed for God to continue carrying and providing for us, and we settled in to go to sleep. But before we fell asleep, a dear long-distance friend (a friend who, I think, didn’t yet know about our AC problem) sent me a gift via Venmo. Maybe that would be enough to cover the service call? We were amazed at God’s timing.

The next morning (this morning), our repairman arrived and checked things out. When he reset things and tried to start the unit back up again, it worked! We think we may have a bad thermostat, but if that turns out to be the case, Scott can replace that himself. For now, though, both units are working and cooling the house, even though no residential unit can provide complete relief from this insanely high humidity.

But that’s not the most amazing part.

Once he was done, he refused to accept payment for the service call.

And that’s still not all.

Then he handed Scott a box of new filters for the units.

And then he proceeded to check and clean both units, top off their Freon, and tell us that he wants to come back out in the fall to check and clean the furnaces. Still refusing to accept any pay.

Then . . . he GAVE Scott an envelope with some cash in it! He PAID us! What in the world?! What was happening here? With the gift from last night, and this gift from this morning, we can now order some groceries for the next few days! AND our AC is working again. This was such a strange plan for how to provide for our needs.

This is the kind of God who is holding us, caring for us, providing for us. The One who hears our prayers and guides our steps, as He writes a most amazing story and never, ever leaves us.

After Scott came upstairs to tell me all that had happened, we both teared up, and I wrote this kind man a text to thank him. This is part of his reply to that text:

“And you wanna know the strangest thing the last couple days I told Scott you guys have been on my heart you guys been on my mind. I was thinking you know I haven’t heard from you guys in a while. I said I hope they’re OK. . . . I also truly believe that God has everything to do with this. God puts this on my heart to help certain people . . . so just make sure you give him the praises.“

Our medical insurance still ends in four days. We are still working to figure out how to move forward on only half-salary as we navigate a new (very slow) world of Social Security and Medicare. But God embraced us gently this morning and whispered into our ears, “I’m still here. I’m still writing your story. I will take care of you. Just keep trusting me even in the storm.”

There is always reason to hope when that hope is in our all-loving Father.

Yesterday was my birthday. I’m sixty-six now! And I’m still raising young teens That’s weird, right?

It wasn’t the kind of day I would’ve chosen for a birthday, but it was still dotted with so much sweetness and love and hope, and all of the surprise messages on Facebook were a blessing for sure. Thank you to everyone who took time to send me a message!

I also see that last year’s birthday was the last time I updated my blog. It’s been such a packed year. There’s no way to recap a whole year, so I’ll just say that I’m learning to live life in the new rhythm that Long Covid’s damage to my body dictates. It’s not fun. Sometimes it’s so discouraging and hard that I want to give up. I’m in multiple rehabs and daily at-home programs and still seeing specialists and therapists in Cleveland, Columbus, and Cincinnati. Just recently, I felt like I was making really encouraging progress with my energy and my breathing, and I was feeling hopeful about the future. But our children’s needs also continue, and balancing it all can be so complicated. If I overbalance just a little bit either in trying to meet the children’s needs, or in pushing forward just a bit too hard with my own rehab, then I have such physical and mental crashes that I have to back up and start again. That’s where I am today. And that’s what this new rhythm of life looks like. In fact, this current crash forced me to cancel my Rehab PT today and focus on resting instead—just when I felt I was doing so well. It’s 4:00 pm, and I’m still sitting in bed. Resting. Praying, Thinking. And now . . . writing this post.

Yesterday, on my birthday, Scott and I spent the day wading through tough cognitive testing with one of our adult daughters who will always be in our care. We are in the midst of several grueling processes to try and get some new, helpful services for a number of our kids, and those processes include more appointments, more testing, more meetings, and more drain on my limited store of energy. But the hope is that, eventually, this will also bring even more enrichment to these children’s lives and, in Kathryn’s case, more help for us. She is a total care adult, and we are praying that it will lead to some much-needed, in-home help with our care of her. Please pray that we can find someone who is knowledgeable, capable, dependable, and kind. Someone Kathryn will be able to connect with. Someone we can fully trust to care for our sweet girl when we have to be gone for other kids’ or our own appointments.

Additionally, one of our older kids is suddenly dealing with a very serious and completely unexpected health issue. It will require a very major surgery, a long and difficult recovery, and some possibly drastic life changes for this child going forward. I won’t go into more detail about that right now. But it has been hard for everyone, especially this child we love so much.

Kathryn’s seizures are finally stable again after a very rough spring, but she woke up with a mouth full of really terrible canker sores almost two weeks ago, and poor thing didn’t understand why she was in so much pain. She was mostly so sweet throughout the healing process, but trying to keep her hydrated and find any foods she could tolerate was huge and hard. As of today, the last sore is almost healed. This photo was taken a couple of nights ago. Kathryn had been crying silent tears of frustration after trying and failing to eat dinner that night, and Roslyn’s little Holland Lop bunny, Mako, snuggled close to her and gave her little bunny kisses, licking her forehead gently. It was the sweetest thing, and it made Kathryn smile a bit.

All of these extra challenges — not to mention the school I still need to finish with the kids this summer, the broken appliances and wheelchair lift in our Ethel van, and the current financial crisis with our non-profit, The Shepherd’s Crook Orphan Ministry (etc. etc. etc), were gradually draining my tank, leading to the crash at the end of the day yesterday.

But when we got home in the late afternoon, one daughter had spent a few hours with Kathryn, baking these darling and yummy daisy cookies as a birthday surprise for me, and another showed up with these flowers, a card with a note of deep love, and a gift card for a manicure. Those things felt like my own sweet little rabbit kisses. I’m so thankful for the support of my kids and my husband.

I’m also so thankful for the precious, deep-in-my heart lessons God has been teaching me as I’ve worked very slowly through several books during my private study on Biblical lament over the past couple of years. I use the word “precious” intentionally, focusing both on it’s meaning, “dear, beloved, and cherished,” and the meaning, “of high cost.” I do feel these lessons have cost a lot as this health struggle has been real. Harder than anyone except Scott knows. Every aspect of my life and our family’s live has been affected in many ways by it. But I truly have never tasted anything so sweet as the nearness of God that has been, and continues to be, part of this journey.

As Michael Card says in his book, A Sacred Sorrow:

“Could it be that today He is inviting us to taste and see that what we imagine as bitter and foul tasting will lead us to a sweetness we would have never expected?”

One more piece of happy news. Our family is growing again as we welcome a new daughter by marriage into our circle. Nathan, our first adopted child, will be marrying Leslie in September, 2026. We had a little, very low-key, family celebration for them this past Sunday. This photo includes everyone except four of our children, a son-in-law, and daughter-in-law, and eleven of our twelve grandchildren. We are so happy for both of them, and the joy of this season is felt by all of us! (The camera was on a tripod with a timer and no person behind it, so all three of our dogs were so confused about where they were supposed to be looking – but they are very much part of this family, so . . . )

I really did have a happy birthday, and I am so, so blessed. And although there was some discouragement in having to cancel my plans and pause the progress in my recovery today, the rest and the time to reflect have been sweet.

And I might just close this then hold one of our rabbits for some real bunny kisses now.

I want to share a little story. It happened just today. But sharing it will require a little vulnerability on my part. Honesty. A confession, in fact. 

Life is always about more than just ourselves.

If we really believe in God’s sovereignty and that he works all things for good, we shouldn’t need to be reminded of this. But I do need to be reminded sometimes. 

Today is my 65th birthday. Last night, I had completely forgotten about this. I only remembered that the day was all about getting dental cleanings for the nine youngest kids. Kathryn asked me at least five times yesterday if I was going with her to the dentist, and I assured her that I was. I was a little worried about promising her this because I knew it was an early morning appointment, and often early mornings are really hard for me; sometimes they are actually impossible for me to pull off. By the time I climbed into bed last night, the level of fatigue I was feeling was extreme. I knew there was no way I could make it to the dentist with the kids this morning. Scott would drive five of them in our accessible van, Ethel, but with all of the wheelchairs, he couldn’t fit the other four kids in. Someone would have to drive another car. I felt so frustrated about my weakness and limitations as I asked our daughter Raiza if she would be able to drive a carload instead of me. She agreed to do this, and I fell asleep on a pillow dampened by my tears. 

This morning, when I woke up, I was still feeling sad. I was also feeling guilty that I had let Kathryn down (she was a little tearful when I told her I wouldn’t be able to go with her), and that I had to ask Raiza to give up her morning to drive in my place. I received a couple of texts from our kids telling me happy birthday, and I was shocked to remember that it was actually today. Then so many messages began pouring in from dear Facebook friends (thank you all so, so much). But I still felt sad and tired and discouraged about not being able to do something as simple as accompany our kids to the dentist. Scott and the kids all got out of here right on time, and I began working on a little dinner prep, and helped Erin with her puppy, Archie.  

As the dentist was nearing the end of all of the kids’ appointments. Scott sent me a message and told me how moved he was by something that was happening with Raiza there at the dental office. A young Hispanic mom was at the front desk with her son who has autism. She spoke very little English, and she was so scared and worried about her son’s dental appointment and was trying her best to communicate his needs to the staff, but she was flustered and couldn’t make herself understood. Raiza overheard enough of the conversation to pick up on this mom’s stress and her deep concern for her little son. Raiza, for those who don’t know, was born in Bolivia. She is fully bilingual, having learned English very quickly as a child, but also having retained her Spanish. She has such a tender heart, and being a mom herself, is especially tuned in to relationships between moms and their children. She asked if she could help, and this mom’s relief was immediate. Raiza stayed with her and translated everything this distraught mom wanted to make sure the staff understood, and also the information the staff needed to explain to the mom and her little boy. It made all the difference in the world to this sweet, lonely, and frightened mother.

The instant I got this text from Scott, I was ashamed of myself. I had been moping around, feeling sorry for myself because of my health issues that are affecting my parenting, silently whining that I couldn’t be at the dentist with my children. Me, me, me, me. This chain of events that led to me having to stay home was about so much more than me.

Life always is about so much more than just ourselves.

The perfect timing of Raiza’s presence in that waiting room was no accident. She was there for this mom, just when this mom needed her so badly. She was the perfect person to be there. Kathryn was fine with her daddy and another older sister by her side. The other kids were all fine. And Raiza was right where she was supposed to be. I would’ve been useless in this mom’s story if I had been there. God knew this. The impact of this light bulb moment was powerful. It was like a slap in the face and a hug, both at the same time. Both of which I needed. 

God writes our stories. He writes good and beautiful stories. Even the parts that are dark and sad are part of a good and beautiful story. We often just have to wait to see that.

I cried again this morning. There was some sorrow and regret in those tears, but mostly they were tears of joy that we follow a Leader we can trust. Only he can see all of the pieces to, and people in, the story that we know nothing about. We just have to stop looking at ourselves and look to him and believe that he knows what he’s doing. 

I promised a quick update after our trip to Cleveland, so I’ll jot a note here about that, as I close. The pulmonologist did a number of tests, but they didn’t shed any light on the breathing problems or the deep, deep fatigue that is so much a part of my life. Again, I want to make it clear that I am still so much better than I was before my heart began to heal, and I am thankful for that every day. But these other issues still affect my life in so many ways, and I miss being the me I was before all of this happened last year. This doctor felt that everything seems to still support the conclusion they have all come to now that the Covid I had in February, 2023, is what caused all of this. He will continue to follow me and his hope is that these remaining issues will eventually resolve the same way the heart is, but no one knows if that will happen. If not, God is still caring for me and loving me and using me and my children in his stories. I trust his ways even if I can’t understand them. 

And I thank him for this beautiful reminder this morning. 

We will celebrate my birthday, Father’s Day, and one granddaughter’s birthday all together this coming Sunday, but my kids are showering me with love and attention today. One daughter brought me a beautiful card and these daisies. I love daisies! Another daughter has gone to buy my favorite ice cream right now, and I have been ordered to choose any movie I want for tonight. Thank you to everyone who has remembered me today, and for all of the hundreds (thousands?) of prayers over this past year. I am so thankful for every person God has brought into my life. 

What a very long year this has been. In most ways, it feels like it’s been much longer than one year.

Last April, I was just starting to get sicker, and it was gradually becoming clear that something wasn’t right. Last May, I continued to get slowly even sicker, with a significant change for the worse the weekend after Mother’s Day, and by the end of that month I had an official diagnosis of congestive heart failure — caused by unknown reasons.

I won’t go through the whole timeline, but by October, I was so weak and tired, and struggling so much to breath, that I had to begin using a wheelchair for any movement outside of our house. I felt like it was very possible that I was going to die. I became aware of an almost ethereal, but still tangible and very personal, slowing of everything, and it felt very real that 2023 just might be my last autumn on earth. I recognized (then and now) that this sounded dramatic, and Scott is the only one I shared these thoughts and feelings with, but I felt certain that the acknowledgement that it could be true was something I needed to face. And moving through that process seemed to heighten all of my senses, allowing me to savor all aspects of life around me, and making me keenly aware of a precious connection with God as he taught me new and deeper things about myself, about him, and about our relationship with each other. I felt more tuned in and more alert as I drank in that fall in a way I’ve never done before. It seemed like I was able to see every vibrant color, smell every earthy smell that is part of nature moving into its winter slumber, hear every exquisite sound as the leaves dried out and rattled against each other on their branches, and feel most acutely, on my face and deep in my soul, every breath of wind that tossed those leaves. It was a strange mix of sadness and peace, and a feeling of being safely held by God as I just waited to see what was coming next.

Then as 2023 rolled into the past, and 2024 opened before us, I started noticing improvements in my health. Testing showed that I was right; things did seem to be getting better, although no one knew why. More testing was ordered, and then almost two weeks ago, it was definitely confirmed. My heart is healing. It is fully recovering, and I am unquestionably returning to full health! The PVC’s are completely gone, my left ventricle is now working well, the wall thickness of that ventricle is looking almost normal, and my ejection fraction has returned to the normal range. My cardiologist was glowing, and practically giddy as he shared this news. He really cares about his patients and was so concerned and frustrated that they couldn’t find any answers. The testing this time clearly showed that I had been suffering from myocarditis, which is an inflammation of the heart:

“Myocarditis is usually caused by a viral infection. A severe case can weaken the heart, which can lead to heart failure, abnormal heartbeat, and sudden death. Symptoms include chest pain, abnormal heartbeat, and shortness of breath.” ~ Mayo Clinic

It’s pretty certain now that the virus which caused myocarditis for me was Covid. I contracted Covid in February, 2023 — just a few weeks before all of this started. But that inflammation of my heart is now gone.

As we left the clinic that evening and headed back to our hotel, I was feeling such a collision of emotions in my brain and heart that I couldn’t sort them all out. I was definitely happy and couldn’t wait to tell our kids — a number of whom had shared with us that they have been afraid I was going to die. But once Scott and I climbed into bed with a pizza and got ready to start a movie together, I dissolved into tears. Bubbling to the surface was a feeling of so much sadness for dear friends who have also been struggling all year. Who have also been praying for healing. Whose children are also fearful of losing them, as they watch them grow weaker and less able to do everyday things. I leaned against Scott and poured out bitter tears over the unfairness of life in this world. What about K, and H, and B, and J, and others I pray for every day — dear ones I communicate with fairly regularly?! Some of us have formed a kind of bond this past year in our shared struggles and uncertainties. I suddenly felt like I was now shut out of that room where we had been able to fellowship together with a common understanding, and I wanted them to come with me. I didn’t want to leave them behind. Why me, God, and why not them?! Why would you bring healing to me? I am certainly no more deserving than they. Their children and grandchildren and loved ones want and need them just as badly.

I spent much of the next week just being quiet about my news and trying to sort through all that I was feeling, and asking God to help me accept the things that I can’t understand and to believe that he is good. Good beyond anything we can comprehend even when things don’t make any sense at all.

I came across this verse and have been holding onto it as a promise while I continue to process my healing and to hold onto those still waiting for their answers as they walk whatever path God has for them now. I don’t want to lose my connection with them. I want to share their pain with them, and cry with them, and pray for and with them.

“I will restore you to health and heal your wounds, ’declares the Lord. . . . In days to come you will understand this.” Jeremiah 30: 17, 24

And now spring is here. The purple wild flowers I watch for every spring are appearing in all their glory, and while spring can’t come even close to rivaling fall’s beauty (Scott disagrees with me about this), I’m trying hard to keep really seeing the beauty God has for me going forward. And barring any unexpected events, I will be here to greet autumn 2024 with open arms when it arrives.

Unfortunately, the breathing challenges have continued in spite of the healing that is taking place in my heart. Strangely, I recently had to do a month-long course on a muscle relaxer due to some complications after an oral surgery, and during that month, my breathing returned to normal. Normal! I noticed this immediately after starting the muscle relaxer, and that month, aside from the constant sleepiness caused by the medication, was glorious. I was astounded by the miracle of breathing every single day as I would sometimes just sit and marvel over the miracle of air moving in and out of my body so effortlessly. I hadn’t even fully realized how hard I’ve been working all year to make this happen until I no longer had to do so. It was such an amazing feeling. And it was a disappointment when that all went away within two days after I stopped taking that medication.

I knew this had to be significant, and after doing a little research, I felt sure it must have something to do with some kind of diaphragm dysfunction. But would my doctor listen to a graying old lady who might just appear desperate for answers? Yes! He did. And he agreed with everything I had to say. And it turns out that this is one more area that can also be affected by Covid — the function of the diaphragm.

We return to Cleveland Clinic on May 30 to do some testing to try to narrow this down a bit, and we’ll meet with my pulmonologist there again. So we are continuing to pray for answers for this last piece. This isn’t my favorite doctor, and I don’t know exactly what to expect. But it’s a next step.

In the meantime, my cardiologist has given me full permission to push myself now as I help my heart move forward with its recovery. He wants me to try hard to fit in both a cardio workout and a separate brisk walk every day. This is hard with the difficulty breathing, and as the temperatures and humidity are both rising (unseasonably so!), it’s getting even harder. But this past week, I managed about 4.5 miles a day, five days out of seven. He warned me that relapse is a risk for this first year, so he doesn’t want to begin backing off on any of my medications until I’ve gone a full year continuing to recover, So those will all stay in place for now.

I’m so grateful to all who take time to read my rambling (and sometimes long) thoughts poured out here. I thank God for all of you who pray for me and our family and who help provide needed support for the kids here at home when Scott and I have to travel for my care. And for all of the words of love and encouragement throughout this hard year. Thank you. I do pray that, somehow, these ramblings provide some encouragement for someone who needs that, and at least make you feel not so alone if you also sometimes question the confusing ways of God that so often seem to contradict his assurances of love for all of his children. He welcomes our questions and our doubts. He wants us to come in deeper and to know him better.

“When you come out of the storm, you won’t be the same person who walked in.”
~ Haruki Murakami

Pretty notable thunderstorms passed through much of the country last week, and we had our share here in Ohio. As the biggest of our storms came to an end, I happened to look through our family room window. It was so beautiful, and I stood there mesmerized, feeling like I was seeing a snapshot of my inside self. Am I really coming to the end of this storm? It seems like maybe.

In my blog post at the end of January, I shared the news that the PVC’s in my heart had suddenly disappeared on their own, and that although my health had improved, I was still really struggling. The entire picture concerning this whole mysterious saga of my heart issues was still just that — mysterious.

It has been a full year now since I was diagnosed with heart failure, and in this blog post, I am so excited to say that for almost four full weeks now, I have felt great! Not just better, but much, much better.

I have felt so many times just like the photo above — like I have passed through a powerful and exhausting storm and come out of the other side. Maybe somewhat battered. Maybe weary. But glowing at my center. So thankful. Definitely changed. I am not the same person who went into this storm a year ago.

I feel highly tuned in to small beauties all around me that I might’ve missed before. Awed by the normal, everyday things around me. I marvel at the incredible-ness of our human bodies. The way they move to carry us from Point A to Point B. The way a clear-thinking brain can plan and juggle many thoughts at the same time. The way air can move in and out, in and out, in and out of our lungs with no effort on our part. It truly amazes me, and sometimes I just pause, sit still, and feel the strength in my trunk that holds me so upright without my having to focus on it. The way my legs feel a glorious stretch as I take normal strides through a grocery store. Or the miracle of effortless breathing as life-sustaining air just moves through my body. What an incredible gift!

Also, my faith is stronger than it was a year ago. It is surer of Truth. God has used this storm to enable me to trust him more than I did before. And this ability to trust him better has resulted in a peace that is deeper and more filling than the peace I had when this storm first came to me. I feel like I know him better, and I know me better. I feel so much more okay with who I am and with who he will continue to shape me into.

I know there will still be more storms ahead. Many, I’m sure. And I don’t even know that this particular storm is gone for good. It could return. Since no one knows what caused it, we can’t know that it’s gone forever. I return to Cleveland Clinic on April 15 to repeat some tests and see what they show now. And while I’m there, I will ask some more questions, not really expecting to get answers. The flip of the switch that resulted in the very sudden end to my struggles to breathe, started the day my oral surgeon put me on a muscle relaxer. I had some complications from a tough oral surgery that set in motion some pretty agonizing spasms in my facial muscles, and we’re still trying to get these spasms completely under control. Part of that treatment has involved taking a muscle relaxer three times a day. It leaves me really sleepy, unable to drive, and still easily tired-out. But I have been breathing almost perfectly since I started taking them. Is this timing just a coincidence, or is there some kind of connection? I won’t go into more details right now about all of the factors in play, but will just say that there are still unknowns.

I am breathing, though! Breathing almost normally! And I am choosing to relish each delicious moment of this, regardless of what might be coming ahead.

I hope to be able to stop the muscle relaxer soon, and get back to driving and not feeling drugged all day, every day. I do sometimes feel some fear about the possibility of the breathing struggle returning at that time, but each time I begin to be afraid, I just pause and feel the beauty of breathing, and ask God to keep filling me with his strength to trust him. Stay tuned. And I am so thankful for all that this year-long storm has done to the inside me so far.

When God takes me away from my dreams, I need to rest in his immeasurable love. I need to remember God’s absolute sovereignty. God calls me to trust the bedrock principles I know from Scripture and from experience — that God is completely sovereign and loving and wise. Will I trust my circumstances that constantly change? Or will I trust God who is unchanging?” 
~ Vaneetha Rendall Risner, “The Scars that have Shaped Me”

I’ll end with a few pictures from our Easter. I kept forgetting to take pictures as I was so busy just drinking in all of the beautiful moments around me, but our oldest son and his little family were in town for the week leading up to Easter, and it was so great to have almost all of our family together on Good Friday. Sadly, a couple of our sons had to work and couldn’t be with us that day, but it was a gorgeous and memory-making day anyway. Scott and I loved having all twelve of our grandchildren together, and spending time with our two West Coast grandsons we don’t get to see very often, doing things with them that my health wouldn’t have allowed before this recent drastic improvement. I even prepared much of our Easter dinner! This felt huge for me! What a gigantic, happy blessing this Easter was, even though we weren’t able to get all of us to church yet.

Our four youngest grandkids on an outing with Scott and me

Kathryn’s long-distance nephews were so gentle and good with her, and she cried so hard when she had to say good-bye.

Such a fun family gathering for food, soccer, Frisbee, talking, running, climbing, cornhole, and hugs

One of our Easter tables

Easter dinner 2024

Cousins

This morning I opened my eyes to gloomy skies, a heavy heart, and a tired body. I sat in my bed and stared out of my window, and the only prayer I could muster was, “Oh, God. I’m floundering today. Please help me.”

I stared at my dear little mini-orchid that seems to be moving into a season of dormancy now, and realized that it is a perfect illustration of how I feel right now. Tired, bent, ugly, dried up, and kind of useless. I now have two little orchids, and one has already settled into its dormant stage. There are two fairly fat buds on this one that offer tantalizing hope, but based on my experience with my first, now dormant orchid, those buds will probably never open and will eventually fall off of the drooping, drying stem. I’m no plant expert at all, and living with orchids is a new thing for me, so I’ve tried to research what’s going on and what to expect. I read this about orchid dormancy: 

“Orchid bloom loss and orchid dormancy are part of the regular life cycle of your orchid, when it rests between bloom cycles. Flowering plants don’t flower all the time, they need to take a break and rest before reblooming.” 

It looks useless and sad, but there is much life and preparation going on deep inside, and eventually, visual signs of that life will return as beloved blooms again. I am trying to learn to live in this new rhythm of up’s and down’s concerning my strength and function and ability to breathe well. That undulation naturally brings along with it an emotional component that can affect everything about each day and result in fear and despair. I’m trying to learn — failing sometimes and conquering other times — to ride these waves, searching for anything God has for me in them. If I can just remain open, there is continual growth in both the up’s and the down’s, and even in both the failing and the conquering. And God is with me through every new and mysterious step. I am not alone.

I finally finished my intentionally slow read through Vaneetha Rendall Risner’s book, The Scars that have Shaped Me, and decided this morning that I would start it again. I always find things I missed when I do a second read-through of an excellent book. The Foreword is written by Joni Eareckson Tada, another beautiful and very human person who has suffered, cried, and questioned God publicly, wrestled with him in the growth of her faith, and encouraged thousands of suffering people in their earthly walks. In this Foreword, she talks about the impossibility of living life as a quadriplegic over the past fifty years since a diving accident broke her neck when she was a teen: 

“It has everything to do with God and his grace that sustains — not just over the long haul, but grace given in tiny moments like stepping-stones leading you from one tick of the clock to the next. And the beauty of God’s grace is that it squeezes those hard moments together, eclipsing the years until one day you look over your shoulder and all you see is five decades of God at work. What you are left with is peace that’s profound, joy that’s unshakable, and faith that is ironclad. It is the hard but beautiful stuff of which God makes your life. Suffering is a strange, dark companion, nonetheless. It’s an unwelcome visitor, but still, a visitor. Affliction is a bruising of a blessing; but it is a blessing from the hand of God. It is how God meets us in our suffering.” 

I don’t know what’s ahead, but I am asking God to take me through each “tiny moment.” 

I want to start with an apology to those who have been reaching out to me, asking for an update and details about my upcoming heart ablation. You have only received silence in response, and I want to explain.

I didn’t mean to make you feel ignored. I just didn’t have any clear answers and couldn’t figure out how to reply. The past few weeks have been filled with confusion, mystery, and a mix of emotions. As of this morning, I have more definitive news. My heart ablation, which was scheduled for next week, has been officially canceled. This update will fill in some of the details. If you don’t want to read it all the way through, I understand that for sure. I would ask if you’d consider at least skimming to the end to read the personal note I closed with. For those who want a fuller picture, read on.

This whole saga has been a bit shrouded in mystery from the beginning. The clearest answer anyone could find to explain the extreme symptoms I’ve been experiencing was the fact that I was having very frequent PVC’s and that those PVC’s were non-perfusing. I won’t go into what that means (partly because it’s not that important here and partly because I don’t fully understand it myself). Doctors could never really agree on whether they felt this completely explained my symptoms or not, some stating that they didn’t see that explaining everything, and others saying it made perfect sense to them. But they did agree that the PVC’s needed to be stopped. Hence the planned heart ablation, with the understanding that it might or might not correct the problems I’ve been having for almost a year now.

But now my PVC’s are gone. They, unexplainably and suddenly, disappeared a few weeks ago. My most recent Holter Monitor results have confirmed that. This should be good news. A miraculous healing. A return to health. A reason for celebration. But it’s mixed news at best. Some good, but mostly just more baffling information. Confusing. Because, while my health has definitely improved with this mysterious change, it’s still far from normal. I am still unhealthy and very limited in my ability to function.

I struggle to catch my breath all day some days, then have better days when I don’t struggle so much, and occasionally I have a day when I feel strong and normal. I love those days so much, but they are rare. I am no longer using the wheelchair, which is good news, but I can’t ever know how far I might be able to walk on a given day, and even on the good days, my pace is slow. I can’t ever predict which kind of day it will be. I can’t find any kind of pattern. 

I am now truly and in very real ways facing the possibility that I will never have any answers and never be fully healthy again. There is nothing that anyone can do because they can’t find the problem. There may be more visits to Cleveland, and maybe more testing (that is being discussed), but mostly everyone is just in the dark about where we go from here, and they have expressed that openly to me.

I’m in a weird place mentally as I try to process all of this. I am so very thankful that none of my days are as bad as they were when the PVC’s were so frequent, and I’m thankful that we didn’t needlessly go through the ablation. But if I have to live the rest of my life like this, how do I do that? That’s the question I’ve been wrestling with throughout this past week.

I am grieving at this moment. I don’t even really know what I’m feeling or thinking. I’m still so young. We expect to still have many more grandchildren coming to us in the years ahead. I want to be healthy enough to play with them. Make memories with them. Help care for them. The ones we already have now, and the ones in our future. I want to do fun and active things with my husband and with my adult kids. I want to dance at all of my children’s weddings. And I want to be full of energy to finish raising our younger kids who are still in such need of mothering. 

And what about Kathryn? She is pretty much a total-care child and always will be. It takes strength and energy and strong breath to shower all 135 pounds of her and dress her and exercise her and play games with her. She will need this kind of care for as long as she lives. My girls who have served by my side with such joy and love, providing this care for her while I schooled and cared for the other younger kids, are all moving on to their own lives now. As they should be. I’m so excited to see them starting their lives. And my plan was to be ready to take these duties back over myself by now. How will I do that? 

This is not what I wanted. But barring continued miraculous healing, this is what I am now facing. This morning in my quiet time, I read this in my book, “The Scars that Have Shaped Me”: 

“Grace always heals deeper. For most of us, ‘grace always heals deeper’ is a sweet idea, but we’d prefer the physical healing. Or emotional healing. Or the return of our wayward child. Or reversal of a financial disaster. Those things are tangible. And visible. A cause for celebration. But grace. That’s an invisible healing. To an outsider, nothing looks different. Life still looks shattered and God may seem uninvolved.  In reality, we are profoundly changed. Grace gives us the courage to face anything, healed from the inside out. For this healing is not just for this life but for the next. It is spirit-breathed, not humanly understandable. It is permanent, not temporary. My grace-saturated healing is not superficial. It is deep and enduring. It cannot be stolen by adverse circumstances. It has led to an abiding joy in God that I wouldn’t exchange for anything.” 

I want to believe this. I want to live this. I want this to be true about me. So . . . for right now, I am crying. I am grieving. But I’m doing that in the arms of a God that I know loves me and isn’t finished using me in this world or in the lives of my children. I don’t know how long I will snuggle here and cry. But . . . eventually . . . I believe he will breathe his healing into me, and I will get up and live again no matter what the future looks like now. Differently, but still living. Not today, though. Today is for crying and being held. 

PERSONAL NOTE:
I have been asked many times since this all started almost a year ago whether I chose to be vaccinated for Covid. These questions have come both from people who know me well, and from those who barely know me at all. I have not answered any of those questions. I will answer that now. 

We, like most of the rest of the world, researched the best that we could during those scary and tumultuous months. We had friends die from Covid, and we feared for the safety of our vulnerable children with special needs and compromised health. Every one of us did our very best to make right decisions during that time for the sake of our loved ones. We each made the decisions we thought were best during those dark months, knowing that none of us could know for sure if we were right (even though many people on both sides cruelly insisted that they DID know for sure). Yes, we did vaccinate. And there is no reason to revisit that decision now. Even if someone could convince us — prove to us — that vaccines caused what has happened to my health, how is that helpful now? I am at peace with that decision, and there is no reason to look back. We always all make the best medical choices that we can with the knowledge that we have at that time, and then we place ourselves in God’s hands, knowing that nothing can touch us without his kiss of approval. We can trust him with anything that comes into our lives. I choose to look forward.

There is some speculation from some of the doctors that actual Covid may have brought this on. I contracted Covid for the first time last February, 2023, and while I was only mildly ill, I struggled with shortness of breath continually after that illness, although I thought it was gradually improving. Then all of the other symptoms began to show up in March and April, and worsened dramatically in May. There is still so much not known or understood about this virus and its effects long-term and how it seems to affect some people, but not others. I don’t think we will ever know what has brought this into my life. But please don’t talk to me about vaccines versus no vaccines. I won’t get into that discussion. I don’t think there is anything anyone could show me that is any different than much of the research I have done myself. Scott and I are very experienced in listening to and sifting through what medical experts tell us, seeking out information and educating ourselves, and then making the best decisions we can. We do not want or need anyone else trying to make those decisions for us. We need loving support and not judgment from either side, and we thank everyone who has been so lovingly offering that to us.

Life as part of our starkly atypical family has, for many years, made typical growing-up things like playing organized sports or participating in community activities pretty much impossible. God and I have had many discussions about this. 

I tell him, tearfully, how important I think it is and beg him to make these things possible for our kids, and he smiles at me with love and wisdom as I gradually, and once again, realize that he is making sure they all have the really, really important/crucial things they need. And I am able to trust him again. For awhile. 

It’s this somewhat cyclical routine between the two of us. I whine. He loves and teaches. And then shows me, through our amazing kids, how unquestionably right he is. He is preparing our children for life in his own perfect ways. 

This year we have, unexpectedly and with lots of transportation help from friends, been able to let Nolan try basketball. He is fifteen and has never played before. He joined a team of boys who have mostly been playing for years. This amazing group of boys took him right into their circle and began teaching him and helping him. His coach has been fantastic. And he has loved it so much. 

His sweet spirit has made friends, and one boy in particular just this past week, feeling the kindness that emanates like breath from Nolan’s heart, chose to open up to Nolan about his grief over losing his family dog a few days ago. He has only shared this loss with Nolan as they have sat and talked several times about the pain they have both experienced in losing a beloved dog, and as this boy asked Nolan to keep this to himself because he isn’t ready to talk about his pain openly with the rest of the team right now. They shared stories of their dogs and the ways in which those pets touched their lives in deep and unforgettable ways at critical times. These teen boys even cried together. And last night, when their team played their first game of the season, this friend told Nolan that he wanted to play in memory of his dog. Their team won the game 32-12, and Nolan told his friend that his dog would be proud of him. During the game, Nolan was so attuned to making sure his friend was okay that he had no idea what the score was. He focused well when he was on the court, but he never thought about the score. That’s how his heart works. 

He’ll never be a basketball star, but he is a team player and a star for sure. He is taller than a number of the other boys, and his very long arms give him advantages some of the others don’t have. But he isn’t aggressive and holds back a bit when he is playing. I assumed this was his lack of confidence due to inexperience, but last night after the game, he casually mentioned that he usually plays “kind of gently” because he knows he is bigger than many of the boys. “Some of those boys are just like little kids, and I don’t want to accidentally hurt anyone.” That’s my son. 

This boy experienced abandonment, abuse, neglect, betrayal, and hurt beyond imagination in his first seven years of life before he finally came home to us. So often, this kind of early childhood pain results in bitterness and brokenness that can be impossible to overcome. Somehow, it had the opposite effect on Nolan. It grew inside of him an infectious joy, the ability to find good in even the bleakest situations, a tenderness for others, and a deep desire to prevent or alleviate pain in every opportunity he is given. 

Scott and I were at his first game last night, and I couldn’t have been prouder. I watched every second of that game except for the moment he made a goal on a rebound. Argh! I missed that! He never even mentioned it after the game. Someone else had to give me the details of what I had missed. He only wanted to talk about his friend and the loss of his dog and the memories they shared together. I love this boy so much. He is such a gift to us and to anyone who comes in contact with him. He has so much to teach the world about the beauty of living atypically.

Here are a few action shots I did manage to capture of our son Nolan. He is the tall thin guy with the gorgeous ebony skin.