My regular readers know that our youngest son suffers from a seizure disorder called epilepsy. I won’t be writing much today, because we are headed to yet another appointment with his neurologist, where my son will be getting yet another EEG test (his third EEG in just the last two months). This experience is the hardest situation that our son (and our family) has to live with, and to manage day in and day out, with the knowledge and empathy for the many other people and families, who also have to live with, and manage this devastating disorder. Here are some truths about epilepsy taken from the Epilepsy Foundation’s website:
1 in 10 people will have a seizure and 1 in 26 will develop epilepsy during their lifetime. We need more people to learn seizure first aid to help save a life.
There are 470,000 children in the U.S. living with epilepsy. Kids can change the world by educating those around them.
Epilepsy receives 10 times less funding than other brain disorders. We need to raise funds for care, advocacy, research and education.
This is a link to an excellent resource to best understand how to help a person who is having a seizure:
The Epilepsy Foundation and CURE Epilepsy are two outstanding organizations working to find cures, and treatments, and funding research, so that people who have epilepsy, have a better chance at living normal, healthy lives. Please consider giving to these organizations when you are making your charity choices. Also please peruse their websites to learn more about, and to understand what people who live with epilepsy go through, while dealing with this deeply frustrating, and debilitating, and sometimes even deadly disorder. Thank you. Thank you. Thank you.
Are you passing on love or are you passing on pain? Heal your pain and pass on love.
Good morning! Today is my favorite day of the week, not just because it is Friday, but because it is also our 27th wedding anniversary. I share a passionate, loyal, understanding, caring, dedicated love with my husband, the love of my life. I am incredibly grateful for the love and the life which we share. We have gone through many ups and downs, and all arounds, in our shared life experiences, but through it all, we have always been, and we will always be each other’s yin and yang. We fit together really well. I love you forever, J. Happy Anniversary!
Typically on Fridays, I list three favorite things or songs or websites or books, etc. and I strongly encourage you to list your favorites in my Comments section. Please check out previous Friday listings for more favorites. (some “favorites” might be good Christmas gift ideas). That being said, during these last two months, our youngest son’s epilepsy has been kicking our butts. (Don’t worry, we’re still in the fighting ring. We’re just a little beat up and bloodied right now. We will prevail!) So, today, I’m quite literally “listless.” That being said, one of my dearest friends, texted this excellent, life-saving tip to our friend group this week and I wanted to make sure that you, my beloved readers, have it, for your safety file. Here is my favorite tip of the week:
Have a wonderful and fun and thrilling (and safe) Halloween weekend, friends! Thank you for being here for me and having my back. Thank you. Thank you. Thank you.
Are you passing on love or are you passing on pain? Heal your pain and pass on love.
I’m sorry, readers, but my son’s epileptic seizures keep on happening, despite the fact that he is now taking five different anti-seizure medications at once. I have no words today. My family and I are worn thin right now. I lose a piece of myself every time that I witness my son lose a piece of himself. Epilepsy sucks. So, I’m just gonna sit here and be a little blue. Thank you for coming by, and sitting with me a little bit.
Are you passing on love or are you passing on pain? Heal your pain and pass on love.
Hi friends! Welcome to Favorite Things Friday. On Fridays, I typically keep things “light” and I list three favorite things or songs or TV shows or books, etc. that have added sparkle and excitement to my world. Please check out previous Friday postings for loads of my favorite things. Today, however, I only have one favorite to share. Lately, while trying to get my son’s epileptic seizures under control, and yet also trying to keep things as “normal” and as “sane” as they can be at this time for myself and for my family, my mind hasn’t been focused on the fluff and stuff of life. We are keeping a simple, quiet, uncluttered routine here in my realm, lately. We are taking things ODAT here (One Day at a Time, Sweet Jesus). ODAT is what always works for me best in any crisis period.
So without further adieu, my favorite for today, comes from a post on Nightbirde’s Instagram. I have listed Nightbirde on a previous Friday Favorites blog post. Nightbirde is the insanely gifted and inspirational singer who is currently struggling to survive her third bout with cancer. While Nightbirde is a wonderful and talented singer and songwriter, I believe that her prose writing skills are devastatingly good. This post of hers is one of my most favorite pieces of writing that I have read in a long time. Enjoy:
A journalism professor in a long gray sweater taught me the difference between a story worth writing and a public relations stunt. A real story still has meaning even if no one ever hears it; a PR stunt only matters if people are watching.
And that became a new item on the list of promises to myself: That I would never let my life become a public relations stunt. My life would have meaning, even if no one ever knew it. I wanted to write a story I was proud of, even if nobody read it.
I used to dream that I’d grow up and dazzle the world. But time and disappointment chipped away at me until only the real stuff was left, and it wasn’t very dazzling. I just had some sad stories and a sack of regrets, and a new reverence for the pieces of me that survived.
All of these shipwrecks have stranded me in desolate places where I stared at my hands and realized that I couldn’t offer the world what I had hoped to. Dreams shatter, and eyelashes fall out, and lungs aren’t big enough to carry the song sometimes.
But I still wake up in the morning and draw my hopes on the sidewalk. And every time so far, they’ve been trampled over, or hosed off, or the rain rolled all of it over the curb.
But I pick more flowers, write more stories, dream more dreams. After all that’s been destroyed, maybe it’s foolish to still be speaking this way, but at least I’m a fool with a soul alive. I swing open the doors on my chest and I offer to the world the only thing that I can: myself. I get it now.
We are not all we wish we were, but we are here, and we are trying, and we are awake. We are not public relations stunts. We are stories worth hearing, even with no crowd in the stands for us. We are the heroes. We are the poem, we are the song, we are the gift.
Are you passing on love or are you passing on pain? Heal your pain and pass on love.
Are you passing on love or are you passing on pain? Heal your pain and pass on love.
These are the tweets that spoke to me today (the adorable baby Starbucks is easily my favorite, how do I order one???):
(Credit: @ClaudetteGGibs1 – Twitter)
“Your essence is never gone, regardless of how many times the world breaks you. It’s what distinguishes you from the rest. That foundation will always bring you back to life. Every single time.” – @TheDragonflySky – Twitter
“You are driving on your own journey, which is the challenge for a comedian. You have a hard time making trains because you don’t want to be with the crowd. You are a lone voice of insight, humor and grace. The train people reflect a cacophony of chaos, noise, and unoriginality.” – @davidkrell – Twitter (addressing the brilliant comedian, Erica Rhodes)
” . . . You have to be strong here, you need yourself more than ever now. Don’t get down on yourself, don’t be hard on yourself. This is a hard time in your life right now and we have to figure out a way to get through this. Feel free to reach out. I can’t do much, but I do understand. Sorry this is happening to my friend. WE will find a way to get through this.” – Statechain1, r/Epilepsy
Yesterday, I had to tell my fifth-grade mentee that we would have to meet online again for a while via Zoom, until we can straighten out my son’s epilepsy medications. My husband was working from home yesterday, while I met with my mentee, but he does need to go back to his office, so I will need to be home with my son, for safety reasons right now. My mentee and I met online all of 2020, so we were thrilled to be back “in person” with each other this year. My mentee was understanding of my situation, of course, but she was also understandably sad. We both were sad. It was interesting to me that after we talked about the change, my mentee didn’t stay in her seat. She got up and wiggled around a lot. She distracted herself with bouncing her stress ball and she crawled around on the floor looking for crumbs which we may have dropped. It struck me that her little kid body, knew to keep moving. Sadness can really bring us to a stand still. The wisdom of her body, told her to get back up on her feet and to keep moving. Keep moving . . . . Keep moving. Just keep moving.
We were at the hospital all yesterday afternoon. Again. My son sprained his shoulder while having another seizure. My regular readers know that my youngest son has epilepsy. And currently his seizures are not being controlled by medicine. My son is totally drained. My husband is totally drained. I am totally drained. I know that things could be worse. I know that there are many others who have it a lot worse, even with epilepsy. I know that I have been blessed in so many other ways, but right now I am honestly too numb to care. I am thankful that my son is alive. I am thankful that we have more medicines to try, and more medicine combinations to try, and more doctors and specialists to see. I am thankful that we have the means to pay for these opportunities. When there is life, there is always hope. But right now, I am totally drained. It is exhausting to even type this blog post. I believe that the storms always pass in life, but right now my family is stuck in a standstill doozy of a non-moving hurricane. And I am totally drained.
My friend mentioned the “hierarchy of pain” the other day. For instance, if you have a major toothache, your chronic sciatica all of the sudden goes into the background. I think this is true of crises, too. Everything that seemed of utmost importance to me about a month ago, are all things that are easily now on the backburner, as we work to get my son settled on some epilepsy medicines that will keep his seizures at bay. When you are in the middle of focusing on an acute crisis, you realize that all of the stuff that you usually gripe over, really doesn’t matter. Nothing is nearly as important as your health and your sanity, and the health and sanity of those whom you love. Everything else is just a plus, but not a must. When things in life are relatively copacetic, that’s when our pesky human nature starts to look for little issues and gripes and annoyances and dramas to stir us up. But when real emergencies are happening, that’s when we realize just how much we complain and worry about so many meaningless trivialities in our lives. Every experience in life, even our worst experiences, have their hidden gifts. The worst experiences force perspective like no other experience can do for us.
Are you passing on love or are you passing on pain? Heal your pain and pass on love.
It’s interesting to me, when you are going through one of your darker periods in life, how much you cling to your mundane chores. Your to-do list becomes your savior. Doing laundry becomes your lifeline. Waiting in queue on a customer service call with bad elevator music, can actually be peaceful and lulling. Doing anything is good. Idle time is scary as hell.
Yesterday, getting groceries was cathartic. A month ago, getting groceries was just another one of the routine banalities of my life. I also look at people differently. I understand that there could be a lot of pain underneath the clerk’s pleasantries. I understand that someone’s grumpiness could be caused by medications that otherwise save that person’s life. One of the rare blessings of suffering, is a true, pure empathy for the human condition. I even empathize with people who numb out, and try not to feel anything, ever. Empathy is a heavy, overwhelming load to bear sometimes.
Fear and sadness sucks the energy right out of you. Taking a shower sometimes takes monumental courage and momentum. And then all the “shoulds” start crawling around in your brain: “You should take care of yourself, so that you can take care of your loved ones.” “You should remember that your family and friends deserve attention for the good and bad things going on in their lives, too.” “You should live in faith, and not fear.” “You should divide your attention and focus equally among your four children, not just your child with epilepsy.” “You shouldn’t feel sorry for yourself. Count your blessings.” “You should stop hovering over your man-child with epilepsy, and help him live as normal a life as possible.” “You should keep the romance alive in your marriage, or you’ll lose even more.” “You should keep writing your blog, or maybe you shouldn’t.” “You should find the cure for all that ails your family, and maybe even heal the entire world, while you are at it.” My “Shoulder” in my brain is a total bitch and a strict task-masker. My Shoulder loves to generate anxiety. My Shoulder loves to control me with shame. My Shoulder tells me that I’ll never be enough. Someone very wise once told me to never, ever shouldon myself. I wish that I could stop my evil Shoulder. I should do a better job with that. Isn’t it ironic that a “shoulder” is something that we are supposed to be able to lean on in tough times?
Recently, I found a prayer in an old wallet of mine that has been one of my favorite prayers for a long, long time. It’s actually the 3rd Step prayer from the 12-Step programs. I have been praying it a lot lately. Not because I should, but because I can, and because it feels good. This prayer resonates with me. Maybe it will help you, too.
“God, I offer myself to Thee – to build with me and do with me as Thou wilt. Relieve me of the bondage of self, that I may better do Thy will. Take away my difficulties, thatvictory over them may bear witness to those I would help of Thy Power, Thy Love, and Thy Way of Life. May I do Thy will always. Amen.”
Friends, I pray to bear witness of my victory over my difficulties, to anyone whom it will help. I do this, quite honestly, because I desperately want victory over my difficulties, but also, I truly like to help people. It feels good. I think that this is what we are meant to do for each other. Please know that despite being in a trough period, I love life. I see beauty all around me, all of the time, to the point that sometimes it even overwhelms me. Love is the miracle, and it never leaves us. Love can never be destroyed. Love sustains all.
Are you passing on love or are you passing on pain? Heal your pain and pass on love.
As you may have guessed, the complications with our youngest son’s epilepsy continues. We spent the last three days at the hospital, thus I have not been writing my daily blog. We are all okay. Our son is back home with us now. (just where a college junior wants to be – back home with Mom and Dad – ha!) This frustrating and mysterious experience of finding just the right drug for stopping epileptic seizures is really beyond a tricky thing. What works for one person, destroys another person. What once worked for years for a person with epilepsy, all of the sudden stops working, with no sensible explanation nor apology.
Thank you for your love and for your prayers. I feel them. I was praying and I was sobbing in the hospital chapel this morning, and then all of the sudden I was washed over with the most calming, beautiful sense of peace. This feeling was lovely and comforting and overwhelmingly awesome, all at the same time. I felt everyone’s presence besides my own, alone in the quiet, solemn chapel. Thank you. Thank you. Thank you. As you can imagine, I have prayed since the day that my son was diagnosed with epilepsy, for this disorder in him, to be healed forevermore. I have tried bargaining with God. I have tried doing good and charitable deeds to be “worthy” of his healing, despite my strong belief in God’s non-judgmental grace. Honestly, I have tried Jedi mind tricks. I am embarrassed by some of the avenues which I have desperately explored, to make this nightmare go away for my son, and for our family. My angel box is filled with little pieces of paper with the same prayer, “Please heal my baby.” Some of these papers are now aged and faded. I have been praying for this miracle, for seven years, since we first got my son’s epilepsy diagnosis. Still, for reasons that I don’t comprehend, my son’s stubborn affliction remains. But yet, at the same time, I remind myself that I have never really questioned why I have been remarkably blessed in so many other aspects of my life. I never question why my family has excellent health coverage which pays for emergency drugs that halts our son’s seizures while they are happening. Many people with epilepsy do not have access to these cutting edge drugs and providers. Without insurance, these drugs cost $1300 per single use. I know how privileged I am. When your heart is exposed to such worry and anxiety and fears about your own child’s well-being, you can’t help but realize how many other parents are going through their own personal agony, dealing with their own children’s afflictions, and on top of all of this pain and fear, they have money worries, and lack of resources to provide their children with the best care available. Many people are experiencing this heartache alone. I have a loving husband whose strong arms I rest in, every night, who shares my pain and yet comforts me with his deep, knowing stares. I have family and friends who support us, and lift us up, with their love and their concern. When my heart bleeds for my son and our family, the bleeding continues to pour out, for all of us parents who are hurting for our children, who sadly, we do not have the power to heal by ourselves. That’s not how mothering (parenting) is supposed to work. I am supposed to be able to kiss every boo-boo away, with a sense of power and ease and nonchalance. I hate every single one of our hospital stays, because every door that I pass as I walk on to our room, holds a room full of pain and fear and yet also a desperate hope, for a family that feels helpless, fearful, dejected and pained. I know their pain intimately, and I wish that I could stop it for every one of us. I wish that I could stop the bleed for all of us, but my heart’s tourniquet is overwhelmed.
Trying to catch my breath and to restore my sense of sanity, I was walking on the medical campus of the renowned hospital where I spent my time this weekend, and there, I spied an incredibly beautiful, old, and glorious tree, reaching out and shading the playground provided for hospitalized children – those young ones, who are still well enough to still go outside and play. I looked at her – the wise and stable tree. I touched her beautiful, cragged bark, knowing that I was touching a vital and living being, older and wiser, than I will ever be. I thought to myself, “There is a poem growing here, perfect for a Soul Sunday on the blog.” And I started to search my mind for the poem. And then I suddenly realized that I didn’t need words for the poem. The splendid, formidable, rooted tree was the poem, just in her being. Her fortitude and her vitality shades and protects her precious fragile charges. She does what she can do, and she takes her job seriously. She stays rooted and strong, and she continues to grow, in order to provide for her charges, with what she has to give. She does what she can, and knows that this enough. Other forces, higher than her tallest, reaching branches, will take care of the rest of what needs to be done. And in the meantime, the tree just does what she can, providing some oxygen to breathe, and some shade and some protection, for those who seek comfort under her solid canopy of restless leaves.
Are you passing on love or are you passing on pain? Heal your pain and pass on love.
I’m okay. My family is okay. We are just going through a particularly dark season with my son’s epilepsy. I never mean to scare you, nor to disappoint you.
The hardest thing about writing a daily blog is that it becomes an expected “everyday thing.” And honestly, writing this blog is one of my most favorite parts, of every single one of my days. I usually can’t wait to write one of my blog posts. I write on my vacations. I write on days filled with appointments and responsibilities. I don’t write lies. I don’t tell you every single detail of my life, but I don’t lie to you about the details that I do tell you. What you see, is what you get. I have a hard time doing this blog any other way. It’s just not in my nature to not be “authentic”. Ask anyone who knows me in real life. Sometimes I know that my loved ones wish that I wouldn’t be so honest/candid/blunt/outpouring. I have been told more times than I care to admit, that I live my life to “the beat of my own drummer”. So it is. So I am.
I am in awe of people who write daily columns in which “neither snow nor rain nor heat nor gloom of night stays these couriers from the swift completion of their appointed rounds.” (U.S. Postal Service) But honestly, these columns are typically distanced from the writers’ individual lives. These columns are usually cultural interest stories, or political rants, or horoscopes, or weather predictions. I write about my life. I write about my experience. And you guys are actually interested. I appreciate this so much. My beloved readers, you will never know what you mean to me. I can’t write this feeling into words, as hard as I try.
I am, quite honestly, going through a really, really tough time, trying to keep it together for my family, and for myself. Lately, I have felt really angry with God/Universe/Spirit. But I have not lost my faith. It is always in my toughest hours that I am completely in awe about how kind other people are, to those of us who are hurting. It’s always in my hardest moments, that I deeply understand just how much strength has been imbedded into each and everyone of us. It’s always in my most difficult challenges, that I understand and I appreciate all of my abundant blessings. I have come to realize that a big part of openly and fully loving just about everyone, and everything in this world, and being willing to be completely awestruck by this incredible experience, which we call Life, also includes feeling and experiencing pain more deeply than anyone would ever wish to experience pain. It’s a package deal. But I am carried by Bigger Hands through it all. We all are . . . .
I’m okay. The people whom I love are okay. I’m not going anywhere.
Thank you for being my friends. See you tomorrow.
Are you passing on love or are you passing on pain? Heal your pain and pass on love.
