We purchased a hot tub a few years ago, with the intention of putting Eva in it, to help her tight muscles. That hasn't actually been something that's worked in more than just theory for many reasons, and so in the meantime it's been a toy for Phoenix. However, something stirred in me over this past winter... Midwest winters can be brutal, and I struggle with being an indoorsy outdoorsy person... meaning, I love the comforts of inside but I want to be outside enjoying them. I do not want to put on 1,000 layers of clothes and go for a winter hike, but I DO want to escape the demands of inside my home... to sit outside my home in hot water while watching the snow fall or the sun shine through the trees. And so I did. For sometimes as little as 10 minutes, I'd try to get in my hot tub a few times a week. With a job and a life that both happen mostly all at my house, I can go a little nuts if I don't leave my home every once and awhile, but it's not always practical to do so, so the hot tub became what felt like my safe little enclosure, like I'm an animal at the zoo. Nothing could get me there, or need me there, or hurt me there, or demand anything from me there. It was just quiet. Blissfully quiet.
One of the things I love to do from this spot is to stare out at the row of tress along the green space we have next to our house. Again like with the antiquing I mentioned in my last post, I'll be looking so intently sometimes that I have to shake my head and wonder what I'm looking for. But what I've realized is that this is where I look for Jesus. And after months of gazing out there, without so much as a single inkling of His presence, I finally heard something. A question. I felt I heard Jesus ask me:
"It isn't all I am, but even if it was, would my company be enough?"
After Eva's accident, we were faced with decisions right away, and they kept coming. The first decisions were, do we keep going? Do we keep fighting for her life, when the scans and tests and everything she was showing us indicated eventual brain death, or super severe brain damage, which would change her forever. There are lots of things I can point to in this journey and say "I didn't know how hard this would be!", but as for where we're at on a surface level, that's actually not true. One of Eva's doctors – her surgeon... an incredible man, one of the smartest people ever – so humble and kind and experienced – sat us down in the corner of Eva's hospital room and told us exactly what we could expect on this journey from a 10,000 foot view. (This is after us begging him for any sort of wisdom he had to offer). At this point, they had already told us that Eva would never be the same... that she'd probably never speak, not be able to see, not know who we are, not be able to move (or if anything, maybe just her right arm). But we weren't asking for clarification in her diagnosis. What we were doing with pleading eyes is asking our trusted doctor, and now friend, what the right thing to do was. Keep going? Let her go? He shared with us in his experience what he sees happen in families after occurances like Eva's accident... I just didn't want to believe him.
From decades of experience in these circumstances, this is a paraphrase of what he shared...
If she lives, the rest of our lives with her will be incredibly difficult. He said that it's very common for marriages of medically complex kids to end in divorce – the stress and the caretaking and the grief become too much, end exposes every growth edge. He shared that this will be a very long road... countless procedures, surgeries, hospital stays. He said often times, at least one parent looses their job. It's just too hard to keep it in the midst of it all. And then the financial impact of that, plus the lack of support and resources. He said that having a child survive with the severity of of Eva's traumatic brain injury has a major impact on the other children in the home, and it's a lot to ask of them. They inevitably come second, because they aren't emergent. This doctor said this all with great empathy, and I will be forever grateful that he shared this with us. Because now that we are there, I can say that we were told. And I don't know that it would have mattered, because we believe it's God whose chose this path for Eva, and not us. But I can say that it makes me feel less alone to think we're not doing it wrong, this is just really, really hard. We've watched Eva cry incessantly, get one tube after another in her abdomen and chest, countless surgeries and pokes and x-rays and procedures and medications and it's just to much for any child. There are hospitals full of brave warriors (with brave nurses) everywhere, and it's unreconcilable what these kids have to go through. It would wreck anyone... how could it not?
After hearing his sobering prognosis of our future with her, after he left the room and we sat in quiet devastation for a few minutes, I had this thought: but you don't know me. You don't know us. If you knew me, and knew what an incredibly hard worker I am... how dedicated and persistent and how I don't take no for an answer... if you knew how huge my love is for her, and for Phoenix... if you knew how I can do hard things, I'm up for the challenge, I'm ready!.. you don't know my community, our support... and you don't know about our relationship with Jesus. With God. The ultimate sustainer, healer, redeemer. I (arrogantly) thought okay, you're basing this off of other people, but we are different. (I'll add here that I was terrified of gaining any knowledge of the disabled community and their caretakers before Eva's accident. I couldn't stand to think of anything heartbreaking, period. BUT IF I HAD, what I would have known is, Dugan and I are not the exception here. This is how this community is built – resilient, loving, hard working, not taking no for an answer, dedicated, determined, strong-willed, fierce advocates. It's also a community full of many people of faith).
What I didn't know at that time was that our doctor wasn't saying this is what happens in the absence of the internal fortitude I knew we posessed, this doctor WAS considering these assets of a community he knew deeply. He was saying that this all what happens ANYWAY. Anyway. He looked at us a few days in to this nightmare and was actually very accurately accessing us based on all of his experience with people in our very same position. And that didn't change the prognosis. All it did, I think, was change the fact that he was kind enough to share it with us, because he trusted us with the hard truth, and with being able to proceed with that information as a piece of a puzzle we were frantically trying to solve.
Fast forward to four years and 8-ish months since Eva's accident, and on this particular spring day, I new I needed to retreat to my safe enclosure of the hot tub, because I. WAS. PISSED. And Heartbroken. Heartbroken because, honestly, Eva's dear surgeon was right. Here we were, right on track. Limping along on the very path he'd allowed us to peek into before it was our reality.
What I didn't know at that time was that our doctor wasn't saying this is what happens in the absence of the internal fortitude I knew we posessed, this doctor WAS considering these assets of a community he knew deeply. He was saying that this all what happens ANYWAY. Anyway. He looked at us a few days in to this nightmare and was actually very accurately accessing us based on all of his experience with people in our very same position. And that didn't change the prognosis. All it did, I think, was change the fact that he was kind enough to share it with us, because he trusted us with the hard truth, and with being able to proceed with that information as a piece of a puzzle we were frantically trying to solve.
Fast forward to four years and 8-ish months since Eva's accident, and on this particular spring day, I new I needed to retreat to my safe enclosure of the hot tub, because I. WAS. PISSED. And Heartbroken. Heartbroken because, honestly, Eva's dear surgeon was right. Here we were, right on track. Limping along on the very path he'd allowed us to peek into before it was our reality.
I think it's important to respond to a question here that someone without a similar experience might ask – isn't life with Eva worth it? Absolutely!!! But the element that makes this a far more complex question than "isn't she worth it," is, "is the quality of the life she has on this side of her accident, and all the ensuing complexities, worth the cost?" And that, my friends, is a question that plagues us nearly every day. It's a weird part of the human experience, and even weirder that sometimes we are able to make decisions based on quality of life, and sometimes we are not. And then comes the question of, who or whom gets to decide what "quality" is? It's a lot to process. I don't know the answers, honestly. But of course she's worth it. Times one billion. For me (and my disproportionate desire for happiness and joy, I would literally do anything to make my children happy. The tension is, though, as all caregivers know... we could give everything in the world and that still can't make our kids happy. I can't make Eva happy. I can help, and I can try, and I can love her so deeply, unconditionally, completely. But that can't make her feel better... can't make her body work or stop hurting, can't make her head feel good, can't make her seizures stop or her body be calm. And so that's what's hard. She can find joy in this world, but this world and what it has to offer isn't good enough for her. It's just not. She was made for heaven... we all are. The difference is just that some of have an enjoyable enough existence to temporarily forget.
I'd been trying to desperately to keep every plate spinning in the air that the surgeon said would drop. And they were all flying around on their swirling sticks, all drunken and out of control, ready to spin completely off and go flying somewhere. I was so sweaty and exhausted form spinning them, (trying to control them), my only hope at this time was that they just didn't all fly off at once, creating more shrapnel of their own. I was so mad. I starred at those woods like they were a human person looking back at me in the face and I said, GOD, YOU... (I won't talk in all caps but I said it mean, okay?) God, YOU me feel so foolish! I thought we were different! I thought if that because of our faith in You and love for You and trust in You, we would have a different outcome. But here we are. We are on the exact same freaking path that Eva's kind surgeon told me we would be on five years ago. We are on that path, walking head first into loosing everything. And Jesus, what did You do?? Where are You? And here's the worst thing I wondered out loud to the forest:
What the heck is the point of following Jesus if it all goes down the same way as if we didn't? Essentially, what difference did You make?
What happened next, what I felt in my heart, is all hard to explain. It feels like it all kind of got laid out for me at once, as something I felt and understood more than an actual dialogue, but I'll do my best to share what became clear to me in the following moments – the thoughts I believe God impressed on my heart, the questions I was asked, and the conclusions I've come to.
"What were you expecting of me?" is kind of what I heard Jesus ask me. And I didn't know the answer... or, I did? Um... well for starters, I was expecting You'd heal her. And if You didn't do that, I expected, um... You'd make the rest of it less painful for all of us, I guess?
And then I received a picture of being on a walk through the woods with Jesus, and I wondered how that would go. I thought about what I knew about His time with the disciples... traveling, fishing, resting, dining... I thought about how calm Jesus seemed to be (mostly)... patient, almost unbothered. Of course, not every earthly experience Jesus had was documented, and yes, I remember the flipped tables. But mostly, I started wondering how my expectations of Jesus in the midst of our crises reflected how the gospels actually documented him acting around his most beloved friends. So I started picturing Jesus and I on a literal walk through dense woods... what would I expect of Him? My answers to myself were weird and inconsistent... would I expect that I wouldn't get a single scratch in the brush? No. Would I expect Him to jump in front of me if a Black Bear started charging at us? Yes. 100% yes. Especially if this is the second bear encounter. I'd let one bear encounter pass, but for sure not two. Would He have stopped it though? If we got lost, would I expect Him to have prevented that? I.. I don't think so? If we came to a fork in a path, would I expect Him to lead me, or would we both look at each other and shrug? I mean, did He and the disciples never get lost? Did He show them every right way? Did they ever get sick? Hurt? Betrayed?
I started to think that I had made up some sort of weird algorithm of Modern Jesus Math that wasn't actually Biblical at all. It turns out, I expect Him to allow me some hurt. But not immense, gruesome hurt. Not copious experiences of hurt. That kind of hurt I would expect Him to stop, obviously. And then I feebly chuckled, because nothing I've ever actually read about this walk with the Lord should have set me up with those types of expectations. Jesus is the King of the Underdogs. The Leader of the Lost. People don't need a Way Maker if they are living the actual dream. What makes it hard, of course, is to compare our journey with the people around us that have easier paths. But the fact remains, the stories I've heard of Jesus aren't who I want Him to be in my life right now – which is like a Holy Harry Potter, swooping people [us] away from every sad/hurtful/traumatic/etc. thing with the flick of His all-powerful wand. I actually don't see Jesus living that way at all.
(I *will* have some questions when I get to Heaven about why the writers of the gospels didn't feel like including more occurrences where Jesus said "no, I will not heal you even though you've committed your life to me and are so incredibly amazing!!!!"... but maybe when I get there, I probably won't care about the answer. I can also see how it's appealing to people to pray to His mother Mary, because she got Him to perform a miracle even when He wasn't ready, so I've tapped her a few times to be like "could you please put in a good word?..." Anyway...).
I started to think that I had made up some sort of weird algorithm of Modern Jesus Math that wasn't actually Biblical at all. It turns out, I expect Him to allow me some hurt. But not immense, gruesome hurt. Not copious experiences of hurt. That kind of hurt I would expect Him to stop, obviously. And then I feebly chuckled, because nothing I've ever actually read about this walk with the Lord should have set me up with those types of expectations. Jesus is the King of the Underdogs. The Leader of the Lost. People don't need a Way Maker if they are living the actual dream. What makes it hard, of course, is to compare our journey with the people around us that have easier paths. But the fact remains, the stories I've heard of Jesus aren't who I want Him to be in my life right now – which is like a Holy Harry Potter, swooping people [us] away from every sad/hurtful/traumatic/etc. thing with the flick of His all-powerful wand. I actually don't see Jesus living that way at all.
(I *will* have some questions when I get to Heaven about why the writers of the gospels didn't feel like including more occurrences where Jesus said "no, I will not heal you even though you've committed your life to me and are so incredibly amazing!!!!"... but maybe when I get there, I probably won't care about the answer. I can also see how it's appealing to people to pray to His mother Mary, because she got Him to perform a miracle even when He wasn't ready, so I've tapped her a few times to be like "could you please put in a good word?..." Anyway...).
I pictured that it started raining on our walk. What would Jesus do? Chill vibes. Storming? Well, we know He sleeps through storms so that wasn't super helpful. In this daydream vision, He didn't actually DO anything but walk with me. Next to me actually. But, I did imagine us making a fire. I imagined us laughing sometimes. I imagined us embracing when we got to the clearing, and delighting that we got through that together.
Then I pictured the same walk without Him with me. I turns out, it felt different in that I didn't carry this same pleading feeling of like "could you please do something about this?!", and that was kind of nice. BUT, I did feel scared. I felt very alone. The darkness felt darker. And I didn't like it.
So then, the question:
"It isn't all I am, but even if it was, would my company be enough?"
Truthfully, I want more. I want Him to fix it. I want Him to do something. And this is where the "It isn't all I am" is important... because what any Christ-follower knows is that HE IS ALWAYS WORKING. Even when we can't see it. Even when we don't understand. And so what I think Jesus did for me in this question is to say, okay, look, you will literally never understand on this side of Heaven. What I'm doing is both too hard for you and too big for you to wrap your beautiful human-sized brain around. And, what could I tell you that would make watching your daughter... and your family... suffer, that would be worth it? Nothing. Nothing you can grasp here, anyway. And you've spent the last handful of years looking for answers that can only come in a language you don't speak. Lindsay, you cannot even comprehend what I am doing.
BUT.
I will be with you. Undisputed. No caveats. All the time. I will be with you, and you don't have to do it alone. And is knowing that enough for you to decide to do it with Me? Even if nothing you experience is different?
And the answer is yes. To whom else would I go. (John 6:68-69).
Yes, I want to walk through the woods with Him. Even if, to my naked eye, He changed nothing along the way. As heartbreaking and painful as that is. Which, it really, really is. And the worst is that, barring a miracle, this will get worse. But what's the alternative? Go with no one? The alternative is to go alone? No. 100% no.
Yes, I want to walk through the woods with Him. Even if, to my naked eye, He changed nothing along the way. As heartbreaking and painful as that is. Which, it really, really is. And the worst is that, barring a miracle, this will get worse. But what's the alternative? Go with no one? The alternative is to go alone? No. 100% no.
I'm going to cling to this picture of walking through the woods with Jesus, and I offer it to you as well. A reminder of feeling the comfort of His company if nothing else. And believing that while He might not be actively doing the thing, He's actively, patiently, quietly, mightily working on every thing.
I have typed and re-typed my comment at least ten times. My words are not adequate. I want to say something that will somehow make this better or easier for you. I want to say something that will make you smile or bring you joy. I want you to know that you, Eva, Dugan, and Phoenix are in my prayers daily. I pray for strength. I pray for comfort. I pray for laughter. I pray for physical and emotional healing. I pray for wisdom. I pray for your marriage. Most of all, I pray that Jesus continues to make his presence known to you and that you are continually reassured that you are not alone.
As the mom of a little girl with severe cerebral palsy, I wish there was a way for me to more fully express how what you’ve said in these two blog posts is so beautiful and honest and true, and how grateful I am that you’ve written them. All I can truly say is wow, and thank you. Sending you so much love and strength as you and your family walk this journey with the Great Physician by your side.
Your blog was so real and you allowed me to glimpse just tge faintest shadow of your daily life. It looks so very hard; massively hard. Yet it is so much better to walk with Jesus than to walk alone.
I’m walking through a season of grief and hurt that seems to crush me most days. I find myself avoiding others sometimes because the pain is real & my heart is too raw. I have walked with Jesus for many years now and I know His goodness. I know His healing. I know His comfort. But this pain is so very hard. This grief; It washes over me and I feel like I’m drowning. And all I can do is cling to His words. He did promise suffering and hardship and tears. He said He would wipe away those tears. But when? He never promised easy. But He did ask us to come to Him when we are weary. He will give rest. I remind myself to go to Him. I must continue to pour out my sorrows at His feet. Only He gives rest. So keep reaching for His hem. Be that woman who waited years to crawl at His feet and grasp His hem and hope for healing.
Such a heartbreaking yet beautiful blog post. I don’t have a disabled child myself but I do care for one on a regular basis and I believe her mom feels so many of these thing. Watching The Chosen season 3 it hit me that Jesus has the ability to heal and “make things better” BUT He is obedient to His Father and what His Father reveals with bring Him the most glory. This also allowed me to see His heartbreak at knowing His loved one is hurting, has the ability to fix it and knows it won’t bring about the Fathers plan. It made me see Jesus with such an empathetic, hurting heart knowing humans pain. Prayers for your family!
Thank you for this. We are in a hard situation with a terribly mentally ill child and I relate to this so viscerally. No healing seems to be coming and things just get worse and worse and I’ve prayed so hard for healing. Thank you for these reminders. I just want the easy life but God is in these hard times somehow. Thank you, thank you.