Patience to Endure

Tag: love

  • Coins

    Coins

    I am struggling today with the “what ifs”. I read that the brain actually prefers guilt over helplessness. Mine is desperately trying to make sense of senselessness. Grief, it seems, can make us become our own harshest judge.

    I remind myself, moment to moment sometimes, that the medical professionals didn’t even know how sick you were. The labwork beguiled the raging infection within you. I just get stuck in the loop seeing it all in hindsight and, I know, that is unfair. It is called “counterfactual thinking” because the randomness of it all is so unsafe. Guilt creates the illusion of control and it is less frightening than believing nothing could have stopped your death even though that is where the harsh, cold, cruel truth resides.

    For twenty-four years my nervous system tied my wellbeing to yours and made your safety my biological responsibility. It was beyond maternal instinct. It was in the very system that made me who I am. Apparently, the neuroscience of it is my brain hasn’t immediately understood yet that our relationship has changed. It still wants to know how to find you, protect you, and fix whatever is wrong. It has not relaxed enough to accept I only find you in my memories now. My brain is deceiving me to search the past instead of the present. It is running thousands of alternative timelines looking for the one where you would have survived.

    My heart knows though even if I found a timeline in which you lived you still would have not. It is a form of self torture of love not ready to let go. My brain exhaustively is still trying to protect you even though my heart knows you are where you no longer need my protection. You have HIS and there is nothing from which you need protecting. It seems now the only protection I can offer is me from myself.

    Sweet boy, I fight the feeling that I failed. I should have, I could have prevented this yet still know I had no control. I cannot control when God says yes and when God says no. How I wish I could. You would still be here with me.

    The average distance between the head and heart is twelve inches. For me, it is measured in years…twenty-four of them. My watch has ended but I can’t seem to put the sword down quite yet. The battle is no longer for your health. The war that rages is between my heart and my mind. Grief set me here in the in-between. This is not where I am supposed to stay. This is not where God wants me to be. I know with all certainty you would not want me here.

    For now, my sweet boy, I travel back and forth. They are both torturous and broken lands. Sometimes a reprieve allows me to wait in the middle. The irony that my head is protecting my heart and my heart protecting my head is not lost on me. Both are in the process of healing and neither are home. Not yet.

    The struggle is two sides of the same coin. My heart and my head are who I am. Each are trying to protect the other and even with the best intentions the flipping creates a chaotic cacophony that just hurts. The day of agreement, they say, is a while away. Grief this deep and this profound does not dissipate soon enough.

    I am waiting for the funeral home to call me back to let me know when I can bring you home. We finally have enough money to pay their bill. I am sorry it took so long. I have cleared a space in my office for you. We sat and had coffee there every day. You would sit for hours while I worked on the computer. The only thing you ever wanted in life was to be in the same room as me. It was my truth as well. In some way others might find morbid, I find comfort having you with me still.

    Your brothers picked out an urn with a picture frame on the front. We liked the idea of being able to change the pictures. They miss you.

    This pain I feel is another two sides to the same coin. For twenty-four years I basked in the glow of so much love and the honor it was to care for you and have you care for me. The coin flipped on February 21st. As great as the love between us is the despair that sits on my heart every day. I know it will get better ever so slowly. The day will come when I think more about your life than your death. I pray it comes soon, sweet boy.

    As I sit in the living room on this gloomy day I find another coin. Your chromosomal deletion is what made you special and beautiful and loving. The coin flipped and your chromosomal deletion is what made you not survive.

    For today, the coins all lay face up in a way that is unbearable. Yesterday it was sunny and eighty degrees. Today it is snowing. Even nature flips her coin.

    I take great comfort that though the coins flip, the promise of our loving God is the final landing will be

    He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the former things have passed away. Revelation 21:4

  • Empty

    Empty

    It is another beautiful day, sweet boy. I feel a little steadier today. Still so very sad and lost but steady in this place.

    Steve took me to the Overlook Produce to look at plants. I was afraid of how I might react when I saw Buc-ees across the street. How you loved that place! You would sign “mouse” and “cheese” to let me know when you wanted to go there which was more often than we could. You were so clever and thought Buc-ee was a mouse and knew it sounded like “cheese”. You had your own language and I was privileged to understand.

    We would get your favorite banana pudding and drive to the Harrisonburg Mall. I would intentionally park at the Old Navy entrance so you would have to use your walker the full length of the mall to the food court. You were always very food motivated. You would sit there and enthusiastically eat every bite while waving to people around us. I will forever remember the staccato movements you would use to scoop the pudding to get as much as possible in one spoonful.

    As we drove today I felt an emptiness. It is always present but this was different. From the years of helping with Grief Share I often heard people speak of the relief that came when they didn’t have to intensely care for someone any longer. They weren’t happy their loved one was gone but they felt a sense of alleviation to not have the responsibility.

    I looked out the window at the mountains in the distance. I didn’t have that feeling I held for twenty-four years. Even when you were in school or we were apart I never settled. At night I slept lightly always with the ringer on because I knew at any moment you might need me. You were ever present in all I did. I was always at the ready and now that I find no relief to no longer be.

    I find it empty in this place. The awful emptiness where something valuable and important was and now nothing remains.

    I got home and the basement door was open. You are gone and now we don’t need to be sure you can’t access the stairs. Scissors lay gently on the coffee table where they could never be for fear of you finding them and getting hurt. I no longer scan the floor a thousand times a day seeking small objects you could ingest. Almost a quarter of a century of diligence all for you are no more.

    There is no relief. Only a vast emptiness where the hypervigilance once sat and never slept. See, in that space was where I loved you best, where I protected you from anything that could harm you. The two things, however, my sweet boy, I could not protect you from was your own body and God’s timing.

    To me, they were both beautiful and awful and merciful and cruel. I miss you endlessly

  • Unpack

    Unpack

    It is a beautiful day today, sweet boy. The kind of day you would sit on the swing and with furious determination scroll through your Ipad.

    I managed to catch up on watering plants and even repotted a couple. Still, most of the day was spent on the couch unpacking the medical trauma from two weeks ago and, of course and always, missing you.

    We got to the hospital on February 17th around 11:00 am. As we waited for them to call us back you were feeling well enough to be ticked off. They drew some bloodwork, got you a room, and started IV medication and fluids. After a few hours you were moved to a different part of the emergency room where the stable patients went until a bed opened. You were supposed to go to the general medicine floor. Even the medical professionals could not see and lab work hid how sick you really were.

    Around 11:30 pm it all began happening so fast that I didn’t know what was happening even as it was happening.

    He is in A-fib. We are moving him to the part of the ED where the ICU trained staff is.

    As soon as she finished her sentence a team descended and whisked you out of the room. We have been in the hospitals enough to know rushing teams is not good.

    You were taken into the resuscitation room with an unsettling brisk pace. At least twenty people went in the room. It was the same room they took Grandpa into by ambulance 2 years before… My heart sank.

    What is happening?

    Let me get you a chair.

    What is happening with my son?

    When they do not answer your question you know you do not want to hear the answer.

    I peaked in your room

    Your blood pressure was 60/40. You were pale. You were dying. I begged you to stay.

    Please come sit down.

    Afib….Low blood pressure. Cardioversion. Shock. Could die…

    Where is Mom?

    I see her standing in the hallway lost. She looked so small and so scared, not the feisty woman I know.

    Can you get my mom a chair?

    We are conferring. He may need cardioversion to shock his heart. In rare cases it can cause cardiac arrest.

    I fall to my knees. Head bowed. Hands clasped.

    Please God, one more time, let me keep my son.

    My mom calls her best friend on the phone. It is midnight. Her friend comes immediately.

    I call Steve. He is crashing. Please come.

    A nurse kneels next to us.

    I don’t know much because he just got here but I will answer what I can.

    Finally someone is speaking to us.

    I look in the room again. His blood pressure is 50/30

    We are pushing a lot of fluid.

    A social worker appears. Do you need a chaplain?

    The only time they call a chaplain is when someone is dying. I decline.

    The fluids seemed to be helping. Cardioversion postponed. They take you to the ICU.

    Over the next few days I would see only small glimpses of you. You were on a lot of medication. I began missing you already.

    The next big trauma would begin on February 21st and would be your last.

    No more shocks to the heart, sweet boy. No more infections or failing valves. No more cascading dominoes. Not for you, anyway. Mommy is trying so hard every day to keep one domino up. I just need one to stay stable. It often teeters but I will not relent. You taught me well. I will make you proud.

    the wish

    to be with you there

    sits on one side of me.

    the desire to make you proud here

    sits on the other.

    and between them

    I’ll sway

    until i have both.

    sara rian, find me there

  • Church

    Church

    Steve and I went to church today with the “baby.” When I brought Nathan home from the hospital thirteen years ago I taught you the sign for “baby”. It didn’t occur to me then that someday you would still be calling the six-foot one teen age brother “baby”. You loved it when he came with us on our outings, especially Target. He loved playing with you and giving you hugs. He hurts deeply now that you are gone.

    I have been reading about “care giver crash” lately. It isn’t a medical diagnosis but is a psychological and physical collapse that occurs when prolonged caregiving suddenly stops. I guess my body was in chronic survival mode. It helped me to stay alert, sleep lightly, and wake quickly so I could care for you. The adrenaline, hyper-alertness, cortisol, and purpose I had for twenty-four years are cruelly and abruptly no more. Apparently it is my nervous system’s way of finally saying “It’s safe to stop now” and years of exhaustion surface all at once. I detest it.

    Then the collapse… exhaustion, bodily heaviness, trouble concentrating, waves of grief, headaches, muscle aches, sleep disruption, feelings of disorientation. Unbeknownst to me, my nervous system was carrying a huge load for a very long time. It didn’t feel like it because it was all in the care of you and it was my honor.

    Add grief over losing you and gravity is much more than 9.8 meters per second squared. Even the weight of my body in the world is different. Steps are heavier. Sitting up feels like exercise. Everything is a challenge.

    When your big brother Emerson was little I remember watching an anime with him where the hero went to another planet to train. The gravity was much heavier so when he went back to his original planet he was stronger, faster and could jump higher. The extra gravity worked to his advantage. Perhaps that will be my case. I hold on to hope still yet.

    But I went to church today. Gravity made it hard to stand. The music started. I lifted my chin and sang the words. As if enveloped in thick mud it took all my strength but I did it, sweet boy. I raised my hands in worship. Worship isn’t an emotion. It is not a feeling. It is a necessity and I felt better for it knowing God is worthy and realizing you are on the other side of eternity singing praise. For a moment, once again but altogether different, together we sang.

    We were going to go out to eat with Grandma and Aunt Dolly later but I just couldn’t. We never did that before because the few times I did go to church I always had to go straight home to catheterize you. Today wasn’t the day to start that tradition. It just didn’t feel right yet. It may never feel right but, I hope, it will eventually feel less wrong.

    On the way home Aunt Dolly started coughing. I still said out loud “Aunt Dolly coughing. Better do something!” even though you weren’t in the car to laugh. Do you remember how I started that game because you would get scared sometimes when you started coughing? Whenever you were scared we would make a game of it and suddenly the fear was replaced with laughter. The unintended consequence was every time you heard someone cough you would laugh.

    I came home and collapsed to the couch. The doorbell rang and it was a friend who has traveled this road. She gave me a book and told me it helped her on her journey. There is something profoundly beautiful when someone who has walked through hell comes back, holds out her hand, and shows you the way.

    find me there.

    where sunsets glow

    but it never gets dark.

    where pain doesn’t exist

    and comfort is always felt.

    where everything you’ve ever loved

    finds its way back to you in the end.

    the place you went to when

    your heart fell asleep.

    my time will come

    to see you again

    and you can

    find me

    there.

    sara rian

    I am so lost without you, my sweet boy. It is an agonizing pain worse than anything imaginable. I find solace that you don’t feel this pain and you are where it is never dark and all you know is comfort. And someday, my child, you can find me there.