Celebrating Sam and Will’s Birthday without Peter

Today, my sweet twin boys Sam and Will turn 13! A momentous occasion for sure and yet, all I want to do today is cry. All I can really focus on, is how gravely ill Peter is and it is getting to me on a 24 hour basis now. He is getting worse and worse and I don’t know what to do next. I feel that I am depressed more often than not. This latest news of his adrenals failing is probably more than we can handle right now. And, on the heels of that news and doctor visit, Peter and I had a hideous fight that was so awful I think I have blocked it for the last few days and yet, I am still quivering inside. When, we came out of that office, I felt a complete feeling of terror and urgency to clean out his system, to “save” his organs by completely detoxing him off of all the drugs he is on and has been, that have made him become completely toxic and have caused his hormonal systems to shut down so much, that he can no longer do much of anything. I felt complete panic and driving home we had the most awful, yelling, vicious fight ending with Peter jumping out of my car in traffic. I went nuts and turned around as soon as I could, driving back to the gas station on the corner. Suddenly, unbelievably, my cell phone would NOT work. More panic. I ran into the gas station and begged these Jamaican guys to let me use their phone. They were kind and very concerned. I called Nick and begged him to come asap. Sam and Will were waiting for me to pick them up in the library and I called Shep and asked him to go there. Then, I began walking the entire shopping center searching and then screaming for Peter who I could not find. Went into the movie theater and then asked them to use their phone so I could try and call Peter. I was shaking too much to dial, so these nice guys did it for me. No answer. I went in and out of every store yelling for him, crying, shaking, hyperventilating and feeling like I would simply collapse any moment. Where is he? Where is he? When I thought I was nearly at my end, he called and said he was down the road, several blocks away and he could walk no longer. When I got him, I could no longer catch a breath and began to feel that I would vomit. He kept saying he would drive but I could not allow that. Eventually I drove us home, where Nick and Shep awaited us to try and have a conversation to calm things down. But mostly, Shep cried and I cried and spoke of how we could not watch Peter like this much longer. Jesus, please, show us the way.

So, now more days of Peter just lying in bed, with no strength, no energy, no hope, no nothing. I went to church this morning but I couldn’t stop crying. The thought of me begging, begging, screaming for God to help us, reduced me to tears. The hymns, made me gasp. I held Shep’s hand so tight and kept whispering to him, “I don’t think I can do this.”

So, now I must snap to it. I must celebrate thirteen years passing of one of the most glorious days of my life. But instead, I cannot stop weeping. God help us all. Help me stay focused on Sam and Will for these next few hours. Amen.

Mother Mary Can You Help Me? Help my Son?

My son, Peter, the Chronic Lyme sufferer, is now in what he says is “the worse pain he has ever felt in his entire life.” He cannot sleep, he can barely eat, and writhes in bed all day and night. He cannot stand it much longer despite the 42 meds per day that he swallows. Those are in addition to his PICC line administered IV mega-antibiotics and intramuscular shots of morphine with still, no relief. I cannot stand this much longer either. I am sick with the yearning, the begging, the pleading with Jesus Christ at the very least, for relief for my son. Mary, Mary, you know. I know you know. Can you help, short of death, or is that the only distance you know for pain and suffering? I have already given up one son. I cannot lose another.

What is it I need to do? What do I need to not do? What do I need to know? What am I missing? I pray so hard that my teeth clench. I went to the Lenten series last night at my new high falutin’ church with soul. I sat, I kneeled, I buried my face in my hands. I listened to the heartfelt music, some hymns, some more modern sweetness and one rendition of that angelic girl in the heart wrenching movie, In America, singing, “Desperado.” It made me cry once again. If everyone wasn’t so perfectly dressed and coifed in that church, I might have considered (for more than a moment), throwing myself on the marble floor and wailing, sobbing, and begging out loud for God’s mercy on my son. I try different words in my prayers. I try bartering. I try being firm and I try allowing my weakest self to beg shamelessly. My son gets worse instead of better. God, can you not hear me? I am screaming? So many are praying. Still, still, still. Help me, help me, help me…. as Anne Lamott would pray.

Yesterday — I stared at my son sitting in the medical office for his exam to qualify for disability. I cringed with sadness at his unwashed hair, his messy clothes, his emaciated body that was once that of a star athlete – captain of every high school sports team. I stare at him, mostly in disbelief, wondering how on earth he could have gotten to this limp, devastated state at 26 years old. How, how, how?

Today –changing meds, changing pain killers at the direction of a seemingly very smart pain specialist, invites some withdrawal into the picture. That makes the pain worse while getting off the high doses of opiates switching to lower doses of methadone which one can only increase at a slow and safe rate. She says, “I can’t increase the methadone faster because I could kill you.” I wince. Adding more sleep meds now, the doc suggests we “listen at night to be sure he isn’t having sleep apneas. Check for deep snoring, or irregular breathing. Get a baby monitor and take shifts with your husband to be sure your son is breathing.” Great. I am already barely sleeping. I am in that constant, itchy, someone-please-rip-my-skin-off state. I now need to listen for breathing patterns. My son mentions that this will drive his mother crazy. “She is your mother. That is what mother’s do.” Doesn’t every mother have a breaking point or are we made of something other than normal blood and guts?

Which is worse? Being in searing relentless physical pain yourself or watching your child, the one you love with all your heart and soul, in that pain? Has anyone ever answered that question? Mother Mary come to me, bringing words of wisdom, let it be.

Labyrinth Walk on a Tearful Night

Went to walk a labyrinth last night. It was hot and buggy and muggy. One foot in on the path and I began to cry. Not sobbing, gasping for breath kind of crying, just hot tears running down my already hot face. As I walked the peaceful path, slightly aware of the bouncing basketball players in the parking lot, vaguely aware of the squeals from the apartment complex swimming pool and only faintly mindful of the lilies and verdant around me, I felt a moment of panic. What if, what if, what if, I never get to the center? What if I can never figure out what to do or what is causing my sons’ illnesses? What if I can never find someone to help them? To help me? To make everyone better? It came to me once again, that I had still never figured out how and why Gregory died. I never did unscramble the reasons he may have gone into that pool or fell or followed the wandering cat to his distraction enough to suddenly be drowning. You see, those three possibilities still float around in my soul. The endless vision of his sweet, round self bobbing in the water face down in his drenched yellow sweatsuit and primary colored shoes. This nagging, unsolved mystery that in the last 15 years, I’ve had to come to grips with and sit with. I have come to live with its absolute unresolved reality and accept that I would never know what happened, only the clear truth, that it did. I might know on my dying day, but no sooner. So, after walking and walking round and round, in and out, through and through, I finally did reach the middle, the center, somewhat annoyed with the mere presence of all the other middle aged women around me. They were doing nothing wrong, it was just my absolute bare, exposed nerves that made me so intolerant. And there I stood in the middle, not feeling the usual peace I have in the past when I arrived at the labyrinth center. I felt nothing, only acceptance that I do not know the center and I do not know the way. God please lead me, support me, help me find the way to help those I love more than life itself. Bring me to the center, the middle, somewhere where I can sit and listen and wait for your guidance. I promise to follow if only you will lead me.