So this thing happened: I had a baby, then I blinked and now he’s having his first birthday.
Only, I didn’t blink. I didn’t close my eyes once, not even to pray. It’s peculiar how the memories and details of this time last year are fresh; they are imprinted in my mind as if it was last week and yet at the same time I feel as though three lifetimes have passed since then.
When this journey began I committed myself to documenting it, knowing that we would need a supportive community around us and believing that maybe someday in the future it would be helpful to someone else going through a similar experience. I failed in that endeavor. I sat down a few times with the intention of putting my thoughts and experiences into words on a screen, and even managed a couple of drafts but for the most part, I couldn’t. I struggled to separate the joy from the sorrow, the hope from the fear, and my perception of reality from the truth of reality.
The first several months after Jonathan was born, were nothing but sheer exhaustion. I mean life is like that when you can’t close your eyes. Then the stresses of the rest of our life outside of a CCHD baby began to snowball and catch up with us as we faced the typical as well as some unexpected challenges in our daily life. Most days I barely form coherent thoughts let alone intelligible sentences to my children and husband. I have failed to keep in touch with even my closest friends and family members. My phone is currently (ie always) painted with those little red bubbles that let you know how far behind in “being caught up” you are. At the moment I have 98 unread text messages and 72 missed phone calls. I won’t even tell you how many thousands of new emails I have or how many apps are reporting multiple updates. Sometimes for comic relief I like to screenshot it so I can send it to my extremely “Type A” husband. He does not find it amusing.
Here we are now a year after Jonathan’s birth and we’re still waiting to blink, to close our eyes and maybe even take a little rest. It seems though that every time we start to relax; to let our guard down, something else happens. Eventually I would like to recount all these pieces of the journey, at least to the best of my memory, which seems to be fairly shot these days. For now though we’re still in that rough trench, hunkered down waiting out the dark. We can see the inky black starting to fade to gray but it’s hard to determine if it’s truly daybreak or simply the artillery explosions lighting on the horizon.
There have been frightening and desolate moments when our hearts fleetingly thought all hope was lost but we have never been without our faith or belief in focusing on the positive. I wish this meant that sunshine and rainbows always shoot out of our mouths when we speak. The truth is that sometimes you’re in a dark place and there’s nothing you can do except exist in that space. It doesn’t mean we’ve given up or are dwelling on the negative. We don’t slough around depressed, devoid of laughter and enjoyment of every day moments.
It means we’re hesitant. We hesitate to brim with excitement over, well, anything and everything. We hesitate to make plans, to answer the door, to go out in public. We hesitate to take on any situation or activity without thinking of every possible outcome and creating a Plan B, C, and D. We’re tired. We overthink small decisions and moments. We feel lost. It seems like we’re always waiting for the other shoe to drop….and while we’re doing this it feels like life is on hold. Which is a strange paradox because life is simultaneously moving forward at an alarming pace. It is anything but on hold.
Did I mention we don’t sleep?
We are in a dark place and that’s ok. It is okay to be in a dark place.
This is a concept I’m slowly coming to understand. In my life I have always been one to grieve and move on. I’ve always felt it’s acceptable to be in a dark place for a day or two but then it’s time to get up off the floor, deal with your issues, and move forward. What I am learning is that it is not wrong to be in a dark place for a prolonged time. It doesn’t necessarily mean you are stuck dwelling on the negative and feeling sorry for yourself. Sometimes living in a dark place is a part of the path. After all, seeds cannot germinate without first being in a dark place.
We’ve been in this trench for about 18 months now, and that makes people uncomfortable. I get it. I’m not comfortable with it either, and I for sure wouldn’t be comfortable with any of the people close in my life being here for this long.
Remember the movie Under the Tuscan Sun? There’s a line from the movie that goes:
“You know when you come across one of those empty shell people, and you think ‘What the hell happened to you?’ Well there came a time in each one of those lives where they are standing at a crossroads… someplace where they had to decide whether to turn left or right.”
I fully subscribe to the theory of choosing to be an empty shell person (or not an empty shell person); choosing to be happy or unhappy, choosing to stay in the dark place or walk out of it. What I didn’t ever consider before was that sometimes you’re an “empty shell person” not because you made a choice to turn right or left but because it is simply the season you are in for the time-being.
I feel like one of those empty shell people but it isn’t because I’ve made a choice not to move on, it is simply where I am for the moment. I don’t want to be here. I don’t like the person I am while existing in this hard place (the dark/wilderness/desert/trench whatever you want to call it). This person is so foreign to me, it’s not who I am; who I know myself to be.
I know I won’t escape this place unscathed, you can’t live through it and not be changed as a result. Yet I am beyond ready to be free of it and the person I am in it.
A year and a half of walking through these perceived traumas. Is it over yet?
The children of Israel wandered in the wilderness for 40 years. Forty years.
I used to shake my head at this story and think “if they had just listened, if they had just had more faith then they wouldn’t have been punished with the wilderness for 40 years.” We are human so we make mistakes. Even when we listen and obey, have all the faith in the world, and do everything perfectly (which we can’t), terrible things still happen. We still end up in the wilderness; in those hard, dark places. What I find particularly interesting about waiting in the wilderness is God’s presence is so clearly evident. Much more so than in many other places. In the wilderness He led as a cloud by day and fire by night. He fed His people with manna and quail. He quenched their thirst with water from a rock. Their clothes did not wear out nor did the sandals on their feet.
I have a favorite pair of flip flops. They’re actually my only pair and I’ve had them for nearly 10 years. Instead of wearing out they have become more comfortable over time and don’t look old or broken down. Hence why they are my favorite/only pair of flip flops. A few days ago on an outing with my “middles” I blew out my flip flop. I was surprised, and not super thrilled to have to walk to the car with one bare foot. Surely it had to be a sign right? What the heck did it mean?
I do believe in signs. I believe God can use every day happenings to speak to us. Ok God, what are you trying to tell me?
I thought of all of the the things shoes and the soles of our feet symbolize. I thought of all the scriptures in the Bible of sandals relating to God’s provision and holiness. Maybe God is reminding me that sometimes we unknowingly tread on holy ground. Maybe He’s telling me that the time in the wilderness is coming to a close. Maybe he’s reminding me that Jesus’ heel was bruised but the enemy’s head was crushed. Maybe he’s telling me it’s time to put on new shoes and get on a new path. This is where I shrug my shoulders, lift my hands and say “I don’t know.”
What I do know is that last week my first baby turned 16, and this week my last baby turns one. I am blessed beyond blessed.
I recently explained our medical shenanigans to someone. When I share our story I often feel like I have to make an excuse because I’m sure people must think I’m exaggerating or making it up. I made a comment to the effect of being unlucky from a medical standpoint. The woman I was talking to turned to me and said “You think this is unlucky? All of your children are alive.”
I had nothing to say after that.
In the past year I have watched friends lose their children to death. It is unspeakable. I can only relate in the sense that I know how it felt in the moments I thought my baby was dying. It is not a club anyone wants join but it is filled with these remarkable humans who even while they have stumbled to the ground and are groping blindly in the dark to find the path again, are willing to take the hand of another who has fallen and help them to reach the path.
My own pain and terror of the last 18 months has been offset by the generosity of spirit that has often come from the most unexpected people. I keep a notebook with a list of people to send thank you cards to. There are several hundred people on this list, and some of your names I don’t even know. Some of you will never know how much your facebook comment or text message in a moment of despair touched my life. Thank you for checking in on us even when I never responded. Thank you for showing up when I needed someone the most. Thank you for feeding us. Thank you for caring for my children. Thank you for sending gifts to people you’ve never even met. Thank you for helping with overwhelming bills. Thank you for praying because for a long time I didn’t even know how to do anything more than whisper “Jesus help.” Thank you for not abandoning us or forgetting us here in the dark.
Happy Birthday precious Lion
The guilt raged within me that this precious babe should have continuously been in my arms being snuggled and loved into this world with his brothers playing cheerfully beside him and not relegated to an hour or two a day of his mom standing by his bed holding the tiny little fingers of the only part of him not covered by tubes and wires.
