This is a story about Hope— a story about how I am learning, slowly, cautiously, like some sort of feral animal creeping in from the corners, how to approach it again.
I’ll start with the best part of the story, because don’t we always want to begin there?
This summer, I got better— not all the way better, not completely healed and healthy, but incredibly, noticeably, beautifully better. We went on hikes, on family bike rides, on adventures in National Parks, and most importantly, we began to feel what it was like to not be drowning.
After six years of chronic illness, the feeling of just barely making it day to day, week to week, without any margin or room to breathe, had just become a way of life. But when the cloud lifted and I began to feel like myself again, we took a deep breath and looked around wondering what we could do with this new space.
The kids constantly ask us “When can we _____?” (fill in the blank), and the answer was almost always “Someday, when Mom is better.” When can we go camping? When can we ride our bikes together, etc etc. But the one that kept coming back was “When can we get a dog?” We promised them that when that day came and I was better, we could get a dog and name him “Someday” to remind us of how long we had waited for “Someday” to come, and to celebrate that gift.
So as the weeks went on and I continued to feel stronger and healthier, my boys began to pray “Dear God, please send us the perfect dog at the perfect time.” And along with the prayers, I began to obsessively research: It had to be a hypoallergenic dog, it couldn’t be a rescue (feel free to ask why, if you’re wondering). I landed on the perfect dog for us, only to discover that they didn’t exist under $2,000. Ugh, there was no way we could swing (or justify) something like that. Feeling discouraged, I remember praying one morning “Is there some way we could get a dog for free???” And there, like a direct answer to prayer, was Facebook… well, not Facebook exactly, but an ad on Facebook for a free Bernedoodle puppy giveaway to a lucky family who need only write a story of why they should win. To make a long story short, we wrote— along with thousands of others— and we won. Our Someday had come.
Winning this puppy was more than just getting a dog. It felt like all the years of silence, of disappointment, of wondering if God was really there, if He was really listening, if He heard our prayers… all of it seemed to be answered with a resounding YES! Yes, I hear you. I never left you. I know even the smallest little desires of your heart. Yes. yes, yes. I remember laughing and crying and pacing the house like a crazy person after getting the news: Someday was coming. Finally, finally, Today was “someday”.
Now allow me to back up a moment and talk again about Hope. After six years of unanswered prayers, six years of treatments that were going to be “the one” to finally make me better, countless missed activities (school concerts, birthday parties, family outings and other life events that passed by while I was in bed), and other losses that have slipped away, I began to learn what it was to curb hope. It was just easier to expect that we would stay in this place, rather than feel the pain, again, of reaching higher and getting burned.
Hand-in-hand with curbed hope came curbed faith. It had just become too painful. There were too many unanswered prayers, too much silence, too many times that someone had “prophesied” that God would heal me, too many times that I was told that the root of my problem was spiritual and that if I believed in God’s love enough, I would be healed (yes, that happened several times, once by a trusted doctor). In the midst of all of that, we were forced to leave our beloved church and community and God began to feel very, very far away. It hurt to pray, hurt to have others pray for me, hurt to go to church. I did the best I could— trying to find a balance of pushing through, wrestling with hard issues, and not putting myself in positions that caused panic attacks. Which is why, when I began to feel better and this miracle of an answered prayer took the shape of the cutest puppy you’ve ever seen, something came to life inside again. Silence had turned into “Yes” and the elusive “someday” became “today”.
This new birth of Hope didn’t come all of a sudden with the dog, though. It started months before, with neuroscience, and the discovery of a saccharine-sweet woman with purple eye shadow and a teleprompter. My doctor told me of an interesting treatment, one that trains you to re-wire your neural pathways (stay with me here). The idea is that our brains are either in the para-sympathetic (“rest, digest, and heal” mode) or the sympathetic (“fight or flight” mode) states, and that when someone lives in chronic illness (or chronic pain, or chronic anxiety), they never move out of the “fight or flight” mode, preventing their bodies from healing. It’s a bit of a kooky idea, but it made a lot of sense to me, and I figured it was worth a try. Enter the lady with the purple eye shadow. I began an online training from a woman who has taken this theory and tailored it for people suffering from chronic illness.
Well, I figured, it’s worth a try, and its not nearly as scary as the bi-weekly IV treatments I’ve been doing. That’s where I was wrong. With every other treatment, I’ve gone in with the attitude of “I’ll give it a try, but I won’t hold my breath”. Why risk more heartache over another failed treatment? But the difference with this one is that it absolutely required both Hope and Faith. I had to 100% believe that this was going to work in order to rewire those neural pathways and move into the “rest, digest and heal” state. It was one of the most terrifying prospects I had yet faced in my six years of illness. And slowly, over weeks and months, I learned to unclench those fists that were so tightly gripped in fear and self protection, and learn to hope again. In fact, one of my “exercises” was to spend 30 minutes a day visualizing at time when my body would be strong and healthy again. I confess that those scenes always involved me outside somewhere, with my family and a dog.
It feels strange to write this, but Hope actually made me better. The training and treatment had an incredible effect. I was exercising, hiking, riding bikes— just functioning. And the most amazing part was, I felt like myself again. The vice grip of fear and restraint that I had put on in self-preservation was beginning to lift, and I began to feel the freedom to feel— and even to (slowly, cautiously) pray and go to church.
Enter Someday. Here is the unexpected twist in the story: Almost the moment that our sweet little bundle of hope arrived, I got worse. There were days and occasionally even weeks where I was still functional, and I hoped that I would bounce back to where I had been, but that was not the case. Soon we were right back to the place we had come so used to: barely making it through each day, with no margin, feeling completely worn. It seemed like there was constant yelling in our home, either at each other or at the very large, very mischievous puppy. We tried and tried to make it fit, but after working every angle, we came to the heart-breaking conclusion that we simply didn’t have the capacity for a dog, even for one as miraculous as Someday.
So, at the time I am writing this, we have about 24 more hours before we will say Goodbye to him. We found a lovely woman down near Santa Barbara that trains therapy dogs, and is willing to take our pup and transform him into an amazing gift for some other lucky family. If he can’t be our “someday”, it helps to know that he will be someone else’s.
Letting go of Someday feels like a lot more than just saying goodbye to a cute puppy that has been part of our family for five months. It feels like letting go of the feeling that we had “arrived” (or at least, that we were about to), that this season of illness and loss was finally coming to an end. And hardest of all is letting go of the idea that somehow this was God’s giant “Yes”.
I wish I could say that I have taken this turn gracefully— that I have taken any of these last six years gracefully. I wish I could say that I have approached loss and disappointment with faith, strength and courage, that I have continued to trust in God’s goodness and presence all along the way. I have watched a handful of other people I’ve known navigate death, illness and loss with a spirituality that has left me sometimes envious, sometimes suspicious and sometimes ashamed. Questions spin around in the hamster wheel of my mind: Why does God stay silent? Why is He so far away? Why would He give so beautifully, only to snatch it away? What is prayer? What does it mean when we pray for something good that never comes? Is God disappointed in me? Am I doing something wrong?
There are theological reasons, good Christian answers, to all of these questions, and let me tell you they do not help when you are in the middle of it (so please, please, if you hear someone asking these questions in the midst of loss, do not give trite answers. Do not tell people “God has a plan” or “God never gives us more than we can bear” or “God is good all the time”. Those answers hurt far more than even the questions themselves). I also know that I am tempted, as I let go of so many other things, to let go of Hope as well. I don’t want the pain of disappointment again, on top of all the other pain.
But the last few months, I’ve gotten in the habit of hoping again. It takes a lot of intentionality— and it can be terrifying and incredibly painful, but somehow even with all the risk, it still feels better than weeding out the little shoots of life and emotion that keep creeping up. One of my favorite stories from the life of Jesus is when he gives an incredibly strange and even bizarrely morbid teaching and most of his followers walk away, shaking their heads and saying “This teaching is just too hard”. Jesus turns to his twelve disciples and asks “What about you? Are you going to leave too?” Peter’s answer has tethered me: “To whom else would we go? You alone have the words of eternal life”. This may not make sense, it may feel “too hard”, but where else would we go?
Maybe I don’t have answers. Maybe there aren’t even any answers to be had. It may be that our “someday” will never come— at least, not in the way we imagined or prayed for it to be. Maybe being #blessed doesn’t mean that God will give us what we want or take away our pain. I think of Mary, the mother of Jesus, in her beautiful Magnificat, declaring that all generations would call her blessed. By our standards, her life was anything but. I wonder if she ever asked God “Are you still here? Do you still love me? Is this really what you planned? Am I doing something wrong? Are you still good?”
I think it is more than okay to ask those questions, more than okay to doubt, more than okay to shake your fists at heaven. More often than not, I struggle to pray, at least in the way I used to. For the time being, it hurts too much to take communion. And I still sometimes break into a sweat when we go to church or when someone offers to pray for me. But I am moving forward. When I can’t find my own words, I pray liturgy— the trusted voices of those who have gone before me. When I can’t hear another sermon or read another Bible verse, I turn to Father Gregory Boyle or visit Narnia to find the stories I need. I spend time every day in guided meditation, training my brain, like physical therapy. I am listening, in the quiet spaces, to hear what my fears are saying, to speak gently to them and offer them to courage to push ahead. There’s even a part of me that is hopeful that in the next year or two my body will reach complete healing. But more than that, I hope and fight for the confidence to know in my bones that God is here, that He is good, and that I will one day again hear His “Yes”.
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