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Return If Possible

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“Sadness is the soul’s way of saying this mattered.” – (from the video above), Jane’s “Ted Talk from Bed Talk”

I, like so many others, was a little bit soul-shattered to hear of Jane’s (Nightbirde) passing over this past weekend. I thought that Jane was incredible – the epitome of beauty, inside and outside. Her voice and her music were amazing, but her writing and her wisdom is what touched the depths of my being. I read recently that we all want to live a long life and to have a short death, and Jane didn’t get either of these. Still, Nightbirde persevered and she inspired millions all around the world, to do the same, and to remain in awe of the beauty in life, all around us. Jane often used the hashtag phrase, #SeeJaneWin. She did win. She won at life by living life fully, and honestly, and earnestly, and faithfully, and hopefully and authentically. She didn’t cheat herself from experiencing “the all of it All.” And she inspired so many others to do the same.

I’ve read a lot of the comments, outpouring on Nightbirde’s Instagram in these past hours after the announcement of her passing. Jane energized many people to keep on going, during their own trials, and health failings, and dark moments in their own lives. So many people testified to this fact. So many people consider Jane to be “an angel on Earth.” One person wrote R.I.P., RETURN IF POSSIBLE. I like that version of R.I.P. We need more Janes in this world. Jamal Edwards, a young, influential rapper, and writer from the United Kingdom recently passed in the last couple of days, as well. He is credited with this thought: “The goal is not to live forever, the goal is to make something that will.”

Our bodies will eventually turn to dust, and our things will be sold in estate auctions. Our only real, everlasting legacies are what and who we affected in this world. These actions are what create the ripples that move all across the waters that cover this entire world, and these collective actions form what we now call “history”. What we create, what we experience, and what we bring into fruition into this world are our gifts, and our endowments to the banks of inspiration, hope, wisdom, experience, strength, faith, beauty- all of the elements of life that others can draw off of, when needed. Our daily being is our one precious gift to this Tapestry of Life that is being created by all of us. We all have the ability to give the highest and fullest and truest forms of ourselves back to the banks of Life. That is our only goal: to give back to the world the only part of us that will last forever – Love.

Thank you, Jane. Thank you. Thank you. Thank you. Bless you, you beautiful soul.

Are you passing on love or are you passing on pain? Heal your pain and pass on love.

The Passing of Storms

Honestly, these past few weeks, I have been feeling really good. But one of my good friends from college is having one of those weeks in which everything that could go wrong, is going wrong. It’s at the point where I can tell that she’s almost embarrassed to tell us, her friends, what else has gone wrong, because it’s almost become unbelievable, to have that many things go wrong in a short span of just a few days. I texted her a mantra which I’ve used to get myself through my rough spots, my entire adult life, “Just hang on. One Day at a Time. The clouds always pass.”

As my regular readers know, last fall, I may have experienced the worst time of my life, to date. Our youngest son’s epileptic seizures were not being controlled by medication, and he was having major seizures, at least once a week (after experiencing many seizure free years). Our son had to come home from his university, and stay with us. Ask a 21-year-old man what it feels like to be “babysat” by his parents. Ask a 51-year-old woman what it feels like to fear for her child’s life on a daily basis. Both answers would be nothing short of “pure hell.”

However, as scared as the superstitious part of me is to write this, our clouds have passed on, from that dark period of this past fall. Our son’s new cocktail of medication has kept him seizure free for a couple of months now. He is back at his university. And I am starting to let myself exhale. I am also reflecting on how different I feel right now, in this moment, than how I felt back then. I clearly understand now, that I was pretty depressed last fall. I was just surviving to get to the next day. The contrast in my optimism, my energy levels, and my overall excitement for future goals and plans, from where I was this past fall, is night and day. I have gone through some harrowing, dark periods before in my lifetime, but going through last fall, desperately worrying about the well-being of my baby, was probably the darkest that I have ever felt, in my entire life. At the very least, it is the “freshest” dark period, in my mind’s eye.

Those of you who are suffering from depression, I want you to know that I empathize with you. It is such a draining, harrowing, soul injuring, exhausting, frustrating experience. And honestly, I was never diagnosed or medicated for depression, during this past fall’s upsetting events. So if it gets even darker than how I felt (such as a clinical depression), my heart bleeds for you. Know this: You are strong. You are brave. This is not your fault. You deserve better. Do whatever you need to do, to get help to feel better. And please know that “The clouds always pass”. I’m experiencing the blue skies right now, after the storm of my lifetime has passed. I am not so naïve to believe that I won’t have more storms roll through, but I have proven to myself, once again, that I have the faith and the fortitude to get to the other side of storms. And so do you. Believe it. Hang on. One Day at a Time. The storms always, always pass. They always do. And even through all of the destruction that the storms wreak, they do leave tiny, little unexpected lessons and gifts in their wake. If nothing else, the storms leave you with the gift of the realization that you are stronger than you ever believed yourself to be, and the joy in savoring the feelings of relief, and peace, and even some happiness, as you bask in your blue sky moments, with your face tilted towards the sunshine.

Not-So-Funday Monday

Yesterday morning, right after I published my blog, I took my dogs outside. My phone rang and I saw that it was our middle son calling. I knew what he was going to say before I even said “hello.” He and my youngest son had gone to a local park to play in a pick-up soccer game. My youngest son had an epileptic seizure on the field, in the middle of the game. I am grateful that my middle son was with my youngest son during this time. My middle son is a student in medical school and he, like the rest of our family, has witnessed many of his little brother’s seizures. In fact, my middle son witnessed my youngest son having his first major seizure, when my middle son was driving them both to their high school, many years ago. He attributes that experience as one of the major reasons why he decided to go into medicine. My middle son knows what to do when a seizure happens. He took good care of his brother, as always. The local EMT crew came. They know us by name now. They took good care of my son, as always. Luckily, since they were on the grass, and his brother was with him, my youngest son wasn’t greatly hurt, just some sore muscles and a scratched up face from some pebbles in the grass. He came home to recover from his seizure. He came home to my waiting arms.

My regular readers know that we have been going through hell this fall with my son’s epilepsy. His seizures are currently not being well-controlled by medicine. In September and October, my son suffered at least one major seizure a week, landing him in the hospital three times. He is currently taking five different anti-seizure medications, as doctors scour for a medication combo and a dosage, that works to keep the seizures controlled. We were cautiously optimistic that we had finally found that holy grail of medications, because this November, our son was almost one-month seizure free. Yesterday ended that streak.

I feel horrible today. I felt horrible yesterday. I feel deflated, dejected and scared out of my mind. But, honestly, I felt wonderful throughout our Thanksgiving break with our family. I felt pretty good the week before Thanksgiving break. I even felt pretty good the week before the week before Thanksgiving break. I sometimes cautioned myself that “I was setting myself up for a big fall,” with all of my hopeful optimism, but I didn’t care. It felt so good to feel good again.

During Thanksgiving break, our family, all six of us, had a great time together. We cooked, we shopped, we went to the movies, we even went boating. My youngest son went to the gym with his brothers, and golfing with his buddies who were home for Thanksgiving break. I won’t pretend that I didn’t have nervous moments. I won’t pretend that I stopped being hyper-aware of any strange noises in the house. I won’t pretend that I didn’t keep my son on a strict medication schedule. But I relaxed, I laughed, I savored. I had so much fun. I felt so much joy.

And today I feel so, so sad, but during the rest of November, I mostly felt ease and comfort and relief, because I let myself feel those better feelings. If I had stayed miserable and fearful and depressed and angry, all of November, yesterday’s seizure would have still happened. Despite what we erroneously believe, worry doesn’t stop any negative experiences from happening. Worry doesn’t help anything at all, and we all know this, but I got a very clear example of this fact, taught to me with this lucid life experience. I am thankful that I let myself enjoy a nice, and hopeful month, because I would have still felt so, so sad today, even if I had fretted and worried and been miserable for the whole month of November.

I say to you this: if you are in a budding new relationship that you are enjoying, savor it. Experience this relationship fully and excitedly, without fretting if and when it is going to end. If you have lost a lot of weight, be proud of yourself. Delight in your triumph. Don’t spend time worrying if you are going to gain all of the weight back. If things are going well in your job, with your family, with your friends, with your health, with your bank account, with your life, soak it all in. Enjoy the good! Facts are, upsetting, negative things happen in life sometimes. That’s just the way of life. No one is immune. Save feeling lousy for those times. Save it up, and rightfully feel miserable when you are in the middle of a rough patch. But don’t let those awful feelings seep into your good times. Let your bad times, make your good times feel that much more amazing and glorious and precious. You are strong enough to handle adversity, and wise enough to know that by feeling happiness in the good times, you are giving yourself something to look forward to, when you are in the middle of experiencing your hard times. Give yourself the gift of savoring life in the moment.

In the bad times choose to grow stronger In the good times choose to enjoy fully

Are you passing on love or are you passing on pain? Heal your pain and pass on love.

In My Hole

When I’m feeling particularly lowly, I dig a big old deep introverted rabbit hole and I go down to the bottom of it and I hang out there. It makes me feel safe. Luckily, I like my own company – even the frowny version. Mercifully, the people whom I love the most, get that about me. They don’t force me to crawl back up, before it’s time. Occasionally, I hear some shouts from the top of my rabbit hole, and a long rope, with a bucket attached to it, is lowered down, and the people who love me most attach little notes and texts, telling me that I can stay down here, as long as I need to, but in the meantime, here are some cards and gifts and reminders that when I decide to crawl back up towards the light of the sunshine, there will be people waiting for me, who care about me, up at the top. If that’s not hope and love, I don’t know what is. Thank you. I love you. I’m just recharging down here. It’s all going to be okay. I’ll be back up soon!

Are you passing on love or are you passing on pain? Heal your pain and pass on love.

Friday Nightbirde

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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.

Trapped

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.

Monday Fun-Day

It’s been nice and cool here the last couple of days. (70s is cold weather here) I’m loving it. The sun is smiling sweetly on us, instead of scorching us with the deathrays of Florida summers. It’s honestly like a switch has been flipped. I want to put a proverbial piece of masking tape over that switch with “Do Not Touch” sharpied on the tape. I am feeling hopeful this Monday. I wish the same for you.

Are you passing on love or are you passing on pain? Heal your pain and pass on love.

Charlie and Milo

This is a picture of Charlie and Milo, twins with Down Syndrome, who are viral on TikTok. This picture gave to me my first, biggest smile of the day. In my experience, people who have Down Syndrome have that ability to make others smile. It seems like the extra chromosome that comes with Down Syndrome, also includes an extra dose of pure joy and happiness. Many, many years ago, I sold college textbooks for a living. One of my professors told me the story about how upset his family was when they learned that their fifth and youngest child had Down Syndrome. At the time, he said, the whole family believed that having a Down Syndrome child was the worst thing that had ever happened to their family. But, as the professor regaled me with many love-filled stories about his family’s adventures with his wonderful youngest son, and the close relationship which the two of them shared, the professor told me emphatically, that their Down Syndrome son was the BEST thing that ever “happened” to his family. (It’s funny how these are the kinds of stories which you never forget in your life. I forget a lot of stuff these days, but stories like these, I never, ever forget.) Here are some facts about Down Syndrome, taking verbatim from DoSomething.org:

Down syndrome (DS) is a genetic condition where a person is born with an extra copy of chromosome 21. This additional genetic material changes the course of development and causes the characteristics we have associated with Down Syndrome.^[1]

The exact cause of the extra chromosome that triggers Down syndrome is unknown.^[2]

One in every 691 babies in the U.S. is born with Down syndrome, making it the most common chromosomal condition.^[3]

There are more than 400,000 people living with Down syndrome in the U.S.^[4]

In 1983, the average life expectancy of a person with Down syndrome was a mere 25-years-old. Today, it’s 60.^[5]

Children and adults with Down syndrome share some common features, but naturally the individuals will more closely resemble their immediate family members.^[6]

Since the 1970s, public schools are required by law to provide a free and appropriate education to children with Down syndrome.^[7]

The likelihood of giving birth to a child with Down syndrome increases with maternal age, however, 80% of babies with Down syndrome are born to women under 35 years of age because this age group gives birth most frequently.^[9]

Roughly 25% of families in the U.S. are affected by Down syndrome.^[10]

While behavior, mental ability, and physical development varies from person to person, many individuals with Down syndrome grow up to hold jobs, live independently, and enjoy normal recreational activities.^[11]

Let’s be like Charlie and Milo today and let our inner joy take the lead with whatever we are doing. Who’s to say that people with Down Syndrome aren’t the wisest people on Earth? What’s wiser than to live in every moment with pure, unadulterated jubilation???

Are you passing on love or are you passing on pain? Heal your pain and pass on love.

Hidden Gifts

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.

Sad Quotes and Quotations: What is Happiness

Are you passing on love or are you passing on pain? Heal your pain and pass on love.

Soul Sunday

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.