If you’ve been following our story via Instagram or Facebook, you’ll already know a lot of unexpected change has been happening in our lives. In a time where consistency is desirable because then at least I can have control, change keeps finding us. It’s like cornstarch and water. When moved quickly, the two substances create a solid. The moment it is still, it turns to liquid running through your fingers. We’re becoming the liquid state of that cornstarch experiment, unable to control a thing. 

I’m often asked this question, “How are you doing?” but my most honest answer is so loaded that I usually give a quick, simple reply. I love sharing our story, I just don’t ever have the time or energy to talk for 2 straight hours (and you probably don’t either).

While Asa was still in the hospital after his emergency skull surgery, the second big surgery of his life (and mine), a close friend asked how I was doing. I told her, “It’s so bizarre, but I haven’t cried once”. This feeling left me puzzled. On one hand, I’ve done this before. I even went alone to the hospital with Asa for pre-op while Ryan stayed home with Koa, and I felt 100% confident. The first time around, we needed to both be there. And after one go-around (not to mention our time in the NICU), we became pros. I have cried while holding Asa down when he’s wiggling in pain, getting poked by needles. I’ve cried watching him be wheeled away to a 6-hour invasive skull surgery where there was risk of stroke and death because of his heart defect, I’ve cried seeing him for the first time post-op, seeing his sutures for the first time, going home without him, etc. This time around, all that same stuff happened, but no tears. I felt kind of cold, wondering if I had become numb, if I loved Asa as much as I should because it was ‘easier’ to see him go through all of this. Her response to my simple reply was, “I think it’s okay to be a little numb right now, therapy will explain it all later”. We both laughed. I am always joking about which will come first, a mental breakdown or years of therapy when all of this settles down. The more I think about it though, with all I allow myself to process in the middle ground, I’m not so sure a mental breakdown is in my future. 

Throughout this journey, I’ve allowed myself to cry when a new wave of grief comes, to be angry when I feel it welling up inside me, and to feel defeated when I find the end of the rope of exhaustion. But I. Never. Stay. There. I allow it to come, I let it out, and I move on, always with a newfound grace. If there’s one thing I’ve done this season, it’s give myself freedom. 

I have found myself sobbing with courage and power as I prayed over Asa, telling the enemy that I was crazy to let him steal as much as he did from my family and that it wouldn’t happen again. I visually sat him in a chair and with tears streaming down my face I boldly proclaimed, “You will sit and watch the miracles God performs in my son’s life”. I’ve also sat holding Asa, exhausted from all the appointments and the never-ending questions I have going on in my mind, while I quietly and tearfully asked God, “How did you think I could handle this?” Some days I feel ready for the job, adequate in caring for him. While others I’m wondering if I’m good enough. 

My best friend was pregnant when Asa was born and her due date was only a few months after mine. She was present at my birth and had her own experience with mourning and disappointment. She knows everything I’ve ever thought and vice versa. A few months ago she was gearing up for labor as her due date approached. I found myself so anxious about it. I was nervous, excited, scared, and jealous. I was in a small group text to get updates during labor and hers was a long one, so texts were coming in late into the night. I was so tired and wanted to sleep but couldn’t, knowing the final moment was coming. I was excited for her of course, but I was also dreading the text that would say ‘she’s here and she’s perfect’. (It’s not that I don’t think Asa is perfect, but that wasn’t the first word that came to mind when he was born). I knew her baby would be just fine and healthy, and I envied the experience she was about to have, thinking ‘this should have been me’. The text finally came, and I cried. I was happy she was meeting her healthy baby, but felt so completely defeated in disappointment of ‘what should have been’. I was finding a new layer of grief and it wasn’t pretty. For the next few days I spiraled into a depression I hadn’t known since the first week of Asa’s life when we were told he wouldn’t live much longer. I found myself hiding tears from Ryan and selfishly feeling sorry for myself. I was grieving the normalcy of birthing a healthy baby that I wasn’t given, for some reason specifically the ‘normal’ experience of bringing a baby home right away and integrating him into the family. Something we weren’t able to do until 2 months and a lot of trauma later. A couple days had passed and we were finally getting to meet her baby. I gave myself a pep talk the entire way there, hoping I wouldn’t just break down and sob, because how awkward, right? I pulled myself together and cried a very reasonable and normal amount of soft tears when meeting your best friends’ baby for the first time. After the moment passed, I told myself good job.

The next few days I stayed in that depression. Then randomly one night, I woke up to feed Asa and had an encounter that I’ll never forget. I was still stuck feeling sad, when all of a sudden I had a sobering revelation. I felt this ginormous beam of light coming out of me. The light within me was shining so bright, it was as if it could be seen from miles away, shooting up towards the dark sky. It literally broke the depression in one instant. It shed light on shame, fear, disappointment and jealousy and they simply had to go. The two realms couldn’t exist and the light was far more powerful than the darkness within me. Afterwards, I couldn’t find even a hint of depression. I was filled with yet a new wave of grace and courage, ready to continue walking this path set before me, even while I championed others on theirs. The light brought peace, confidence, and clarity. No darkness could come near me. The revelation felt so random, but then I thought about the new baby girl’s name, which means light. I told my friend about this the next day, talking about how prophetic that name was for her and how she’s already living up to it. To which she replied, “That’s all I ever prayed her life would be marked by”. Ellie has already found her way into my story, or maybe I into hers. 

During Asa’s recent overnight sleep study I found myself looking through old pictures. I came across a picture of Asa’s original nursery in the corner of our bedroom, from before he was born. It had all the normal baby stuff, a changing pad, diapers, wipes, and some cute wall hangings and shelves. Then I found a picture of what his current space looks like. Medical equipment, syringes, cords, an IV pole, tubing, cords, an overly full outlet extension, and more cords. I flipped back and forth, letting the gravity of our reality sink in, yet again. I was angry that Asa never got to experience that first nursery, more-so that I never got to experience it with him. I’ve found many layers of grief on this journey so far. In the midst of learning to be thankful for the child I was given, I’m still mourning the one I imagined, the one that was never actually mine to begin with. Isn’t that funny? We paint fantasies in our head, ones that don’t exist. And when it doesn’t happen just how we imagined it, we’re caught off guard. I was caught off guard by this new wave of grief, wondering why I was here again. Haven’t I already gone through this? Then I quickly reminded myself; grace. You’re going through something big Cassie, it’s okay that you’re here again. So I felt all the things, I let them settle, I accepted and acknowledged them, and I moved on. 

At the same time, I also find myself so completely thankful. I feel as if I have been invited into a very elite club where I get to learn about all of these incredible things from such a personal and intimate place. Inclusion, acceptance, differences, love, compassion. The special needs community has been such an amazing group to discover.

When I think about the road ahead, I often describe it as a long miracle. Asa has been prayed over for instant healing, and to be honest?, I am expectant but I also know that this kind of miracle will take time. To be on the receiving end of prayer for healing is a weird place to be. I’ve prayed for healing before. You get moved, you get filled with faith and love, and then.. realistically.. you walk away. I’m the person still sitting and waiting though. And I’ve accepted that. Something else that’s difficult is knowing that everyone’s life moves on. Whether you’re in a good season or a hard one, the lives around you continue.. with or without you. We’ve really honed in on the group of friends we walk with in this season and I wouldn’t have it any other way. They’ve walked with us, truly walked with us. That doesn’t mean always knowing what to say, it doesn’t mean always finding an answer. It means being consistent. It means offering a listening ear, a shoulder to cry on, or someone to just hang with and do normal life stuff with.

I recently received a prophetic word about God taking care of my family and putting my dreams in front of me. My first thought? “How do I dream when most of the time I’m simply surviving? Or when my mind is flooded with a million other things that have nothing to do with myself?” The part that touched my heart the most was “God will take care of your family”. That’s really all I care about right now. I have dreams, but they’re most certainly shelved for the foreseeable future. I’m not saying God couldn’t, I’m saying I don’t have the capacity right now. My dreams are to live on a commune with my family for a season, to create sustainable systems in urban homes and creating gardens for kids to take care of themselves so they can get outside in the dirt, to write a NY Times Best Seller and go on a book tour, to teach prophetic activation again, to adventure again- traveling, backpacking, camping, to lead a ministry where I take groups of women on short backpacking trips where I teach them the basics like pitching a tent and lead them through connection with their hearts. Honestly, how would any of these happen right now? I have more faith for these things to happen than ever before, but my number one priority is that my family would be healthy and happy. 

When I imagine what it is I’m doing with God, I see a dead end at a rounded cul-de-sac with multiple doors. I’m standing in front of 5 doors with a choice. Which one will I walk through? The path I’m on has ended, and I make the decision of which to walk on next. There are banners over the doorways. One says Denial, one says Bitterness, one says Hope, one says Trust, one says Disappointment. All the doors are closed except one, disappointment. As I peer through the opening, I see something I never would have imagined a path behind this door looking like. It’s a narrow path weaving through a lush, wild, bountiful, beautiful garden. It’s narrow enough for one body at a time, and the foliage is tall so there’s no telling where the path leads. It’s inviting, but unknown. The vision pans to an aerial view. I see the paths and where they go. Denial and bitterness both quickly veer off to the left, with twists and turns, eventually ending in a maze that leads nowhere. To get out of these paths, you must find your way back down the path you came, back to the initial cul-de-sac. These paths are barren and dusty. The three paths on the right: hope, trust, and disappointment, all end up intertwining in some way or another. Finally they find themselves consistently weaving like a braid, all heading in the same direction. The three become one, like small creeks joining into a large, meandering river, and it goes on beyond the eye can see. 

Friends, there is no authentic hope and trust without real, raw, and painful disappointment. Just in the same way that our love for God wouldn’t be authentic without a choice. If everything in our lives went according to our plan, if all our expectations were met, oh how easy it would be to have hope and trust. But oh how shallow they would be, how shaken they would be with the first unmet expectation that meets them. When disappointment comes, because it will, it strengthens our hope and our trust in God. I think that’s why I saw the path of disappointment as lush and beautiful, instead of dark and barren. It sure feels dark, doesn’t it? It sure feels barren and lonely, but the beauty that is being created in the midst far outweighs the momentary darkness, if you let it. If you travel that path just a little bit longer, I promise you will find the intersection of hope. I promise trust will find you again.