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.