No one can really know what a life is like unless they are living it. I try to convey hard moments in this writing place, attempt to communicate facets of all of this with clarity and truth and a kind of vulnerability I am resistant in nature to display. Christ’s work in me, these words you read here. Last night, Jesse lost his ability to speak coherently. He could say words, and could tell they were not the words he intended. He laughed at first, because this is one of the things that just happens in our lives now. After half an hour of jumbled speech, the laughter faded into grief, the calm into panic quieted only by the presence of our children so near, keeping us both reacting with awareness of their peace at stake. He moved to our bedroom, and I remained in the living room in a well-worn spot which affords me the ability to see him in our bed while tending to other facets of our lives. Over the years, we’ve developed a system for these kinds of things, so much so that, two Wednesdays ago, when Jesse had a particularly awful seizure followed by literally crippling fatigue, I was the only adult in the room I surveyed who did not wear a look of panic. I’m used to it, you see. Our kids were also unfazed. They knew just as well as I exactly what was happening.
I knew he understood me, though he could not respond. I knew what to ask and how to ask it. I knew how to lift him off of the ground and get him to the van. I knew he would resist help walking, even though he was unsteady on his own feet. When we got home, I knew I would have to lift his legs out of the van and help him into the house. I knew he would go to one of two places in our bedroom to recover. I knew I would have to hold him standing, squeezing him as tightly as I could, pressing my chest into his so he could feel the rhythm of my heart and steady depths of my breaths, whispering in his ears to breathe with my breaths, to let his heart come to a slower beat, to match my own. “You are safe. You are loved. You are protected. You’re okay, Jess. Safe. Loved. Protected. Just breathe.” He crumpled to the ground, laid his head on the pillow I had toted into our bathroom with me, curled up in a ball on a large rug he loves to run his hands through while I take a bath and he verbally processes through his day, and fell into the deep sleep of a man who had just run a marathon on one leg without so much as a crutch to aid him. Seizures are taxing to his physical form and to his emotional state. Mine, too. I knew what the pacing of our lives would be for the next three hours. Kids were fed and sent to shower and climb into bed while he rested. Half an hour later, he was sitting up and eating the food I prepared and placed beside him for when he awakened the first time, knowing he would be hungry but too weak to get up and feed himself, too beat up from the inside out to call out my name. He ate, asked for more, and fell back into slumber in the few minutes I was gone refilling it. He regained enough composure to pray with the kids that night. Sometimes, he does. Sometimes, he does not.
The day before the aforementioned Wednesday, he had a seizure while sitting at the dining room table and Adley, seeing it begin, calmly walked up to me and asked if she should get him a pillow or if he was ok to just put his head on the table, since it did not appear to her to be a very bad seizure. She is 8, now. She was 5 when all of this began. It’s her normal. Three days before his Wednesday seizure, our youngest son came running down the stairs to find me. He was crying hysterically, caught up in a panic attack born of overwhelm his tender years would not allow him to identify. I scooped him up into my arms, squeezing him in the way I would be holding his daddy a few days later, and told him to breathe with me, whispering into his ear, “You are safe. You are loved. You are protected. You are okay, Abe. Safe. Loved. Protected. Just breathe.” I walked to his room with him and helped him sort through the things spilled out on the ground, the provokers of his overwhelm. Buckets full of trigger memories were emptied onto his floor. The toys he used to “play pretend” with his “old daddy” years ago. The stuffed animal his “old daddy” brought to him from a trip. Adley came in to help just as Abe was recounting a memory from years ago, and she said in a way that was half-statement, half-question, “Well, but Daddy is better now cuz his tumor isn’t so big…”. She turned to leave the room and I grabbed her arm and turned her face to mine. “Your daddy is very sick, baby. We’ve been given lots of years with him we didn’t expect to have and we are so thankful…but he is the kind of sick where he will never be well until he’s healed and home. Remember that we don’t know how long we will have him with us.” She nodded knowingly, pivoted toward the doorway, and left. I saw her set her jaw and shake her head in slight defiance as she walked away, as though telling her reality “NO” would make it go away. She returned a few minutes later, looked at me and then her big brother, who was sitting on the edge of the bed with eyes full of tears, and said, “Well. We’re just gonna be grateful we have Daddy now, huh, Mommy? I’m glad he didn’t die, yet. Aren’t you, Abe? I’m glad we got to keep him for a while.” She brought Abe’s beloved blanket to him. He smiled. And that was that. We cleaned up his room, exchanging different memories as we worked, talking about books and characters from games Abe loves. Jesse came home, and they ran down to greet him, giggling excitedly about their day, and hugging him before they ran outside to play.
When people ask me how we are doing, the “No. Really. How are you doing?” kind of asking, these are the types of memories that flash through my mind. How are we doing, really? We’re okay…We are also not okay. Is that an answer?
Our lives, like everyone else’s, are too complex to be communicated in a one word response as we pass briskly by one another in route to whatever task lies before us. I think…I don’t know…I think we’re just really bad at being okay with not being okay, and we are worse at receiving anything but positivity in response to our inquiries about someone else’s state of being. We’ll take a false sort of “Fine” over having to hold someone’s grief in our hands and help them carry it. This is true of me, too, sometimes. But, friends. We were made to live. Made to carry each other. Made to grieve and suffer alongside. And we rob our selves of so. much. good. when we keep the part of us made to be given away. My life, Jesse’s life, the lives of our children…they are hard. So hard sometimes I have nothing inside me but pain and fear that it will never relent, that there will be nothing left of me to give to anyone the next moment, that my children will never recover from the trauma of a daddy dying even while he lives. I lie in bed at night and have no words to utter to God anymore, some nights. Other nights, words flow out like a busted pipe. But this I know, because this I live: Every broken moment, every dark night, every tear, every grief…none of it lasts. It all fades away in the blaring light of Hope.
How are we, really? Meh, we’re sorta okay sometimes, sorta not others. But we’re going to be just fine, because we’ve learned to hope anyway.
“Therefore, since we have been made right in God’s sight by faith, we have peace with God because of what Jesus Christ our Lord has done for us. Because of our faith, Christ has brought us into this place of undeserved privilege where we now stand, and we confidently and joyfully look forward to sharing God’s glory.
We can rejoice, too, when we run into problems and trials, for we know that they help us develop endurance. And endurance develops strength of character, and character strengthens our confident hope of salvation. And this hope will not lead to disappointment. For we know how dearly God loves us, because he has given us the Holy Spirit to fill our hearts with his love.” Romans 5:1-5 NLT