I’m very blessed with my career to have met hundreds of readers who have made a difference. They reach out regarding my books, and sometimes along the way, we become friends.
Surrounding myself with strong, savvy women in my life is key to my happiness. When one of my readers and friends sent me this piece written by her for a MamaLogue to read, I was overcome by emotion. It’s a beautiful post about her struggles with her beloved son; a testament to everything that is painful and heartbreaking and hopeful and loving. It is a post about strength and family and overcoming odds. I asked if I could post it and she agreed. This blog is by Elizabeth Carris, entitled A Beautiful Distraction. I hope it touches and moves you as much as it did me. I hope her words give you some hope and strength today if you are struggling.
Emptiness and clutter invade my mind at the same time. Sounds of a fan blowing and the tic toc of a clock on the wall and a train whistle echoes in the distance are the sounds that keep me company and keep my mind from falling. I have become someone new, someone I hadn’t imagined I would become. I am but a mere shell of a shattered, capsized spirit of a woman who picks up the pieces and walks with a smile of a broken heart, wounded by life’s cruelty. Handed a disease we didn’t want. Facing my son’s mortality on a daily basis cursed with anxiety and a dreadful imagination that can be used in utter delight for fun fantasy or complete despair with loss of hope. I am comforted by dreams, whether at night from a medicated sleep or by day through the rabbit hole I go down and through the looking glass of my cognition. I am constantly searching for a beautiful distraction from the reality of my every day. Pills morning, noon and night for my love bug and morphine in between for the PAIN along with a fentynal patch and chemo once a week. A bag packed with entertainment and goodies to keep him occupied as the poison drips through the IV. May it work to kill the cancer and not him, nor leave lasting effects as to always remind us of that dreaded disease. The sound of an IV pump can be compared to that of creaky boards on an old pirate ship. I imagine walking the plank and diving into the sea in some dramatic rescue attempt. And to hold the tubes when he gets up to walk with his IV pole which he calls a “cyborg” you can feel it pumping in your hand. It’s a slight vibration that gives me chills when I feel it. I can pull 3ml’s of morphine in the dark while turning on the heating pad on with my toe and the TV with my hand as he suffers in PAIN at night. It has become routine.
That is the card we were dealt by that bastard The Joker. The card of PAIN. His disease is cancer yes, but it arrived unwanted and in the form of PAIN. Agonizing, debilitating, unfuntionable PAIN. It is managed by heavy narcotics, enough for a grown man and by mom’s distractions. Music is medicine in our home. Always on to comfort and soothe and to create an alternate reality if need be. And bubbles do more than float away and pop. They distract and show colors of the rainbow when the light shines on them. He is that light that flickers in my darkness. His strength is my strength. His love is BOLD as his life is being stripped before him. No school for him, but an amazing tutor. No play time with recess and running and jumping but a play therapist that visits to help cope with emotions and his new normal. PAIN limits his daily life and to walk is even a task. Steps lead to his bed as he cannot get in and out without them and I shower with him as he cannot bend over to wash himself. I am his caregiver and his mother. I have learned the anatomy of the brain, spine and nervous system and I know words and their definitions because they are necessary.
It came on in the fall of 2013 and hasn’t left. PAIN is a mother fucker and I hate it. They say there are stages of grief and though he still lives, I believe I have felt them all. Because this isn’t living, it is simply existing. He is a 5 year old dealing with a very adult disease and very adult PAIN. He comprehends all of it too. You wouldn’t think the magnitude of all this could sink into the psyche of a child but it has. He told me head down quietly at the table one day playing Lego’s “Mommy, I know we don’t say this but I hate my PAIN” and I said, me too. We don’t say “hate” in our home due to the power behind the word, but I allowed him to say it then and always because he does hate it. He also has said he is mad at the world for getting cancer and he didn’t understand why, but he was. If that isn’t a blow to the heart, I don’t know what is??? Oh, and we allow him to call himself a “badass” too, because he is!!
Days come and go where my mind wanders down the cobble stone covered paths decorated with neon signs and art deco buildings and weeping willows by ponds I long to sit by and dip my feet in up to my knees feeling the cool water over my skin as I lean back, hands planted flat, fingers fiddling with the blades of grass tilting my head back, eyes closed feeling the sun drench my skin. A long sigh leaves my lungs as I take a glance around and notice the beauty of my fabrication. Often times I use guided meditations for he and I of walking on the beach feeling the azure waters flow over our feet making them sink into the sand as the salt kissed breezes whip my hair about and I hold his little hand in mine while the sun warms our bodies and our hearts. Taking away the cold and the PAIN. I watch him run about playing like a normal healthy boy. Other times I try to lose myself in a sinfully sweet and seductive novel where the characters come to life in my mind page after tantalizing page. I like a real book. The smell of it, the tactile feel of it. Those words so raw and real and dirty definitely take my mind away from it all. But eventually I wake up or my day dream interrupted by reality or I have to close the book and mark the page to return to eventually. And all is back to where it was.
See, in the morning he has cancer, in the night he has cancer, he always has cancer. And I have become someone different. A stronger, bolder, weaker, faithful, faithless, hopeful and helpless all at the same time me. I am the captain of this ship in the middle of the storm of our lives. May I steer it well and may we see land soon, so we can have that walk on the beach and feel normal and PAIN can leave for good. Adler has become a fan of poetry that we read to him nightly and Oh Captain My Captain is his favorite by Walt Whitman and The Thousandth Man by Ruyard Kippling coming in a close second. He adores everything super hero and could challenge the great Stan Lee on his comic book hero knowledge. And often while I read my books or day dream away the seconds, minutes and hours with ol’ father time Adler is sitting on his beloved heating pad whom he actually calls a friend watching countless YouTube videos and becoming imaginary acquaintances with families online that post these videos he watches. It would be sad if I actually didn’t know how much it soothed him to watch those videos. He also has found a love for the iPad and all the games he’s become addicted to and very good at on it. Those games have spilled over into toys and plush friends on his bed or just hanging about the house now and onto bigger games on the Xbox. It not only comforts him while being accessed for chemo and before surgeries and MRI’s it’s another tool in the arsenal of distraction that we have found so useful against the dreaded PAIN. So we both have found our beautiful distractions through this and may time be on our side as we continue to fight and conquer one small victory at a time. And may we always stay Bold As Love and never let the light dim and my we scream with powerful voices when he is all better LAND HO!!!!!!