I see the hospital room, the bed, the medical equipment, and the large cup of coffee I hold in my hand. I see the nurse, PCA, doctor, another doctor, and a few more, then the cleaning lady and the other however many people that come in and out of the room every day. I see my daughter lying in the hospital bed and recognize the oddity of familiarity it has begun to bring. I see the text from my son, that gives my heart an ache because I haven’t been able to see him in over a week. And I see the window in my daughter’s hospital room separating us from the rest of the world, but I cannot see the rest of the world.
I’d hoped for an 11th floor admission this time solely to have the assurance of at least an amazing view, as the 5th floor has little to none. But the 11th floor was full and here we are back on the 5th where the only thing we can see out of the window is the other side of the building and ironically part of the Ronald McDonald House where I have a room across the street. I should be grateful this time for at least a glimpse of something else, as the last 3 admissions prior we were in a room on this same floor with only the view of another outside wall. But I don’t feel very grateful. I just feel like I can’t see.
When we lived out west in Wyoming I used to love that we could see for miles in the wide open spaces, unhindered by trees that may block the majestic views of mountains in the distance. I have always highly valued a great view. I find peace and hope when my eyes can gaze for miles until the end point is the horizon in the great distance. I get lost in my thoughts and gaze, taking in the beauty of a mountain view or trying to figure out how many people must be out there within the miles I can see to the horizon, and what they are doing. My imagination feeling free. And with all of the hospital stays the last couple of years, one of the things that has helped me endure was to at least have a grand view of the city of Columbus, however mundane that must seem in a city that lacks any variety in elevation. It is flat as far as you can see, but still gives me the ability to look, and imagine, and wonder, and bring a different perspective of sorts to our current circumstances. It physically helps me see, giving my mind brief respites and calm, and often enabling me to be able to see better mentally as well. Finding the good in the hard, the healing in the pain. But around about hospital admission #12 in the last year and a half it feels like I can’t see anymore. And in pace with my emotions, my physical views have now been stripped from me as well. Coincidence? Maybe. Purposeful? It is certainly beginning to feel like it. I can’t see. Literally.
Joy in the pain, healing in the suffering? I can’t see. God is in control, God is sovereign, God is with us. I can’t see. I can’t see anymore because the tears that fill my eyes cloud my vision, their release an attempt to cleanse and refresh. But I feel far from cleansed and refreshed. I just feel sad. And broken. And empty. The day Rylie was admitted last week was the same day one of her friends who also had complex medical needs passed away. A crushing sense of grief gutted me as I had spent the evening before struggling through yet another stressful episode with Rylie’s care, and realizing another hospital admission was impending when I received a text that her friend would likely not live through another day. I don’t know how to grieve and process the weight of it all. It is a reality when you have a child with such complex medical needs, that their days may not be as many as you dream your child will have. Multiple medical traumas, PTSD, and the day in and day out of skilled level nursing care to your own child - those are all really hard things, and take their tolls in different ways. But the loss of a child? I cannot bring myself to see, at least not yet. I can’t see as I sit in this hospital room after consulting with my daughter’s surgeon trying to decide yet again why my daughter just isn’t quite improving completely. Moving into the second week of just trying to stay sane when no one can yet give you even an idea of when she may be well enough to return home.
I have heard that our brains find comfort and security when it has a schedule or end date so to speak. When it can anchor hope on the light at the end of the tunnel because we can see it. Sometimes closer, sometimes further away, but if our brains can confirm at least the boundaries or foreseeable endpoint of a difficult, traumatic, or trying circumstance then it is as though we can move forward easier in that knowledge. Because it is just that: knowledge. And when we know something for sure we can grab onto it, steady ourselves with it, and sometimes move forward with more optimism because we know whatever ‘it’ is that it will not last forever. We gain a sense of control and what sometimes could be a manufactured type of hope.
But what about when we can’t see the end? When the tunnel has no light at the end, but is pitch black instead - increasing our anxiety with every step as we cannot tell what the next step will bring in the tunnel. Or if the next step is missing and will cause us to fall. We yearn and ache and weep for the light because walking in uncertainty for so long has dried our souls and broken our spirit.
The hits keep coming so to speak, is what I have felt like recently, with this last week feeling like the most recent one caused me to tumble down a staircase knocking out my breath, leaving me lying at the bottom on the floor deciding if I can get up again. IF I want to get back up again. I crave to see purpose and meaning and redemption in it all but I can’t. God is good, he is sovereign, he brings good to all things. I believe all of those things, but right now I can’t see. I’m left staring at the ceiling, broken and bruised, crushed and tired. So very, very tired. And for the first time in a long time I just can’t see. I can’t see why we needed multiple hospital stays and two months of extra stressful home care to finally figure out what is wrong. Only to be back in another open ended hospital stay because the fix is still not definite or concrete. I can’t see the light at the end of this hospital stay no more than there is light at the end of the tunnel in raising and caring for a child with such medically complex needs. Because there isn’t one. We are living in an uncomfortable, unsecure, open ended, never ending trial. A life of walking in suffering in depths I did not know existed. It has challenged everything I thought I knew and everything I’ve said I believed. Completely wrecked my faith- in the best of ways at times, but lying on this floor after such a painful figurative fall has me crying out for something, anything to call good. An anguishing feeling to be able to grab onto something, even if it is in the dark, because you know that light is not at the end of our tunnel.
I can’t see because I am in it. And I literally cannot see past our room, forcing me to move my gaze back into the room. In the thick of this reality. Like I am supposed to absorb it all differently this time. See something differently? I see this hospital room and the hall with all of the other rooms filled with babies and children who have all been here for various amounts of times. Some days, some months. Our neighbor here in fact has spent the last 10 months on this floor with the literal horrible view. Every night I kiss my daughter good night and pray for protection over her as I leave her to be cared for with professional strangers. I walk across the street and slide my key card to get into a house that isn’t like the one you live in. You cannot just ask to stay at this house, or even pay to stay unless your child is a patient at the hospital. It is a house full of rooms with families experiencing all different sorts of medical crises with their children. Some staying a night or two, and some moving in for months on end if their child needs extensive hospital care. It is a world where everyone is experiencing the heartache of watching their child go through something difficult. Something you never want your child to experience. I have made many new friends there over the years when we have stayed there and it is not because I am so extroverted (because I am very not). But it is because I can literally walk up to any parent and ask them the simplest of questions and form and instant bond. I can honestly say I get it, I see you. It is an instant connection because I have realized that pain is not particular or persnickety. Pain has no barriers when you can’t see the light. No judgment here, only a desperate need to connect with another human that feels something similar. Another human to empathize and relate to who you can cry with you in the rawness of this dark pain.
You see something interesting happens when you are forced to live through a specific kind of painful experience. Actually two things, two very different things. It gives you a super power to suddenly be able to connect with any other human being who has been through or is going through the same thing. But it also seems to repel anyone else who hasn’t. You suddenly have your choice at building instant friendships with anyone who has a similar war story. A friendship equivalent to instant coffee or instant oatmeal. You just get right to it. But you find yourself isolated from everyone else who hasn’t been through the same thing - sometimes intentionally and other times not. Veterans connect with other veterans, AA meetings have their own instant connections, and refugees can relate with each other in ways most will never be able to even partially relate to. Human pain and suffering connects us deep ways, forging relationships and creating bonds that are only experienced. Too difficult to explain the how. Because it is impossible to put adequate words to the ways these relationships are sewn together, welded in a solidarity and understanding.
And so as I lie here at the bottom of the staircase in the tunnel without a light, I hurt in deeper ways than I’ve known before and feel emptier than I knew I could feel. I struggle to find motivation to get up, keep going, you know- fight the good fight. Keep advocating, keep hoping, keep on keeping the faith. And to be honest I do not have anything super profound to share. I just felt the need to write. After some encouragement from my husband today who reminded me how long it has been since I have actually wrote. Writing helps me process and heal and communicate. And writing is what I have felt like God has given me to put a voice to an overlooked population that few are trying to listen to. Because no one necessarily wants to hear the hard things. Society isn’t searching out those isolated in their stories of suffering with an empathetic ear. But we are here. And our stories may be uncomfortable but maybe it is our raw humanity that the world needs more of. Pain and suffering are what draw humans together in the deepest, most meaningful of ways, and yet we still fight the urge to run the other way when we see it.
It is these relationships I have made and other stories of suffering that I have connected with, that remind me I am not alone in the dark. And they also remind me that there are so many others who are still alone in their darkness. Who ache to connect with someone else who gets it. Who SEES them. And deep down in my own weariness of this moment I know the significance of being able to connect with others in this way. I know because I have experienced before how Jesus shows up in these relationships in the most unexpected ways. But I need a minute to remember, and hope again, and walk in it all again because for now I just need to lie here asking more questions as I lament.
Tonight the tunnel feels darker than usual. I can say the truths in my head but my heart is struggling to allow them to penetrate. I just need to feel right now, and grieve, and take a minute to lie here in the dark. To give myself time to catch the breath that was knocked out of me and figure out how to hope when I do get back up again. I tend to feel all things deeply (#enneagram4) and so I do know there is a danger in getting stuck in my feelings and forgetting the facts, the truths.
This whole week I have heard myself say in my head “I can’t see. I can’t see…” And a couple of days ago I was updating page info with my blog site address. And because I struggle with all things technology and remembering how to get places on the web, it took me a minute to even figure out what the exact website address was to my own blog but when I finally pulled it up I saw my own words speaking right back to me. It has been a while since I posted something and I had forgotten the words written on my own home page:
“Disabled Faith is surrendering everything, holding onto nothing, and allowing the brokenness to bring the healing. Experience the reckless, redeeming love of Jesus…”
Followed by:
“Hebrews 11:1 Now faith is the assurance of things hoped for, the conviction of things not seen.”
I can’t see. And yet: Faith is…the conviction of things NOT seen.
Faith. It is a lot easier to have it when you see a light at the end of that tunnel. Or is that really just optimism and a good mood manufactured from the control we feel when there is a light? Is it really faith when we feel in control? When we anchor our hope in a tunnel light? Or is true, authentic faith found when we believe through the dark?
These are a few of my questions while I lie here. A light at the end of my tunnel isn’t going to show up, but maybe while I lie here I will find a little more endurance to look for sparks of truth and try to stand again, as I stumble around in the dark, reaching for this thing called faith.
I can’t see right now and I have been deeply grieved by the fact that I can’t. But it is because I forgot hope comes from the things we canNOT see…
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