Epilepsy Awareness Day

MY FAMILY ~ MY LIFE ~ MY LOVES: March 2013 | Epilepsy facts, Epilepsy  awareness month, Epilepsy awareness quotes

My regular readers know that our youngest son has epilepsy. Last fall, we were working on finding a combination of medications that would keep his seizures at bay, and yet have fewer side effects. (Epilepsy medications have a great amount of side effects. They are essentially medications that affect the brain and many other major organs in the body.) From July until Thanksgiving of last year, my son was averaging having at least one major seizure a week. I cannot begin to explain how awful and scary and painful this experience was for our son, and for our family. Luckily, we found a combination of three medications that are currently working to keep our son seizure-free. Some people never find medications that work. Some people with epilepsy suffer several seizures a day. It is a terrifying condition. My mind has often gone to the Ukrainians who have epilepsy and other major medical conditions, who have no access to their medications. It is so wrong that this is happening to them, on so many levels. I cannot even begin to fathom what they are going through.

If you search “epilepsy” on my blog you can read more about our story. If you are so inclined, please give a donation to the Epilepsy Foundation. This organization is the leader in funding research for hopefully one day finding a cure for this deadly condition.

Thank you for your continued love and prayers and concern for my son and for our family.

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

That Glow

Yesterday I experienced some of the lesser qualities that often come up during the holidays. These annoying little frustrations: cancelled orders, delayed orders, thinly-veiled passive aggressive guilt trips, twinkly lights half on/half off, things breaking out of nowhere when I am in a rush to go, long waits to get chores completed, and an email from the high school principal telling us parents to please not worry about a viral, national social media post, threatening bombs and guns at numerous, anonymous American high schools, across the nation. When these types of happenings occur as a one-off, you usually let them slide off your back as best you can, but in the middle of the holidays, when there is this underlying expectation to be so jolly and merry and bright, this string of annoyances made me start to behave like I belong on The Naughty List, in a big way.

While there are so many things that I love about the holidays, yesterday made me focus on what I like the least about the holidays, and that is the distraction of it all. It’s not like our everyday chores and obligations and routines go away, while we are busily and yet also thoughtfully, trying to do all of “the extras” that come with the show. Sometimes I even feel resentful. I just want my “normal” life back. During the holidays, it’s often easy to become irritable, and then flog yourself for being an irritable brat, during what is supposed to be “the most wonderful time of the year.”

That being said, yesterday I also noticed some of those most special gifts that tend to come around the holidays, the gifts that aren’t wrapped in a bow, and put under the tree. My two youngest children, celebrated being done with their finals, by going to see the Spiderman movie together last night. They both have been Marvel fans since they were little, and they made giddy plans, careful to not watch any spoilers, to go see a movie that they both ended up thinking was one of the best Spiderman movies they had ever seen. When they came home and excitedly regaled my husband and I, with the highlights of the show, my mind kept flashing back to two little children, brother and sister duo, watching Marvel cartoons and playing with action figures for hours. I think, at this moment, I might have started glowing like the Christmas tree.

One of our youngest son’s best friends from high school (and who also attends the same university), picked up our son for some golf yesterday, and he also told our son to keep himself free Monday night, because a few of my son’s buddies are wanting to take him out to a fancy steak house, to belatedly celebrate our son’s 21st birthday. This invitation came on the heels of the news that my son’s fraternity brothers did a fundraiser late this fall, and were proudly able to send a check for over $1000 to the Epilepsy Foundation, in my son’s honor. My son has had to remain home with us, for the majority of this semester, because his epileptic seizures have been uncontrolled, and as always, his wonderful friends have been so supportive and loving and kind. And witnessing all of this, reminded me of just how loving and supportive and kind all of our friends and our family have been to us, during this difficult chapter in my son’s epilepsy experience. And this is when I know that I started glowing, even brighter than our Christmas tree. And I didn’t feel distracted at all, at that moment. At that moment, watching my happy, contented children and reflecting on the love that we have been given from so many people, and the love that we have for so many people, despite my earlier frustrations, in this sometimes crazy, annoying, distracting, frenetic time of the year, all that I felt at that very moment, was peace. All that I felt was love. All that I felt was gratefulness. And these priceless, eternal presents, are the presents that are always here for the taking, when I take the time to notice them, and to soak them in. And that’s when I get that glow, that glow that starts from deep within my heart. I get that glow which you could never buy in a bottle. And I try to hold on to that glow, for as long as I can.

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

If You Are Loved

“D.T. was a better person than he was a player, and he was a Hall of Fame player. That tells you how good of a person he was,” said Peyton Manning. “He treated my kids like they were his own. He was there for every teammate’s charity event.”

I was heartbroken to hear the news that Demaryius Thomas, a former professional football player, mostly known for his time with the Denver Broncos, passed yesterday at the age of 33. It is believed that Thomas died while having a seizure in the shower. This is a fear that any of us who love people with seizure disorders, deal with every single day. My son once had a seizure in the shower. I remember my husband ripping off the locked bathroom door that day, as if he were the Incredible Hulk. Any time anyone tragically dies of circumstances related to seizures, it is like a giant gut punch to me and to my family. It makes the gravity of my son’s epilepsy all the more real and visceral to me, but yet like a moth to a flame, I need to know more. I need to understand what happened in these various stories. I think that I am always trying to understand “the whys” and “the hows”, even though this is usually a lesson in futility. Usually “the whys” about anything that happens, often remain a mystery, and yet it is our human tendency to waste a lot of time on “the whys” about anything. The most repeated answer is usually nothing more than “just because.” Let it be. I have to remind myself, again and again, that I am not in control.

I spent a lot of time yesterday reading the stories about Demaryius Thomas. By all accounts he was a wonderful, stand-up man. When he was 11, Demaryius’ mother and grandmother were incarcerated for drug trafficking and they remained in jail for around twenty years. Demaryius was raised by his aunt and uncle. He became singularly focused on becoming an excellent football player and by many accounts, he ended up being one of the greatest receivers to play the game of football. In 2015, Demaryius wrote this wonderful blog post entitled “For Mama” for The Players’ Tribune. Here is an excerpt:

“No amount of money, no amount of fame, no amount of anything in the world can replace your mother. I realized that holding it all in wasn’t good for me, and I reached out to a preacher who really helped me talk through it all. People think orphans are kids whose parents have died, but 80 percent of orphans in the world have at least one parent who is alive somewhere. There are millions of kids just like me all across the U.S., and hundreds of millions all over the world.

We rely on the kindness and the couches of others to get us through the day. I had multiple high school coaches who looked out for me. Multiple college coaches. Deacons. Pastors. Aunties. Uncles. Friends. If even one of those people had let me slip, would you even know my name? Maybe not.

I talk to a lot of kids who have parents in prison, or who left them when they were young for one reason or another. I know the anger. The pain. The fear. Especially the loneliness. They just want somebody to say, “I care about you.” But that doesn’t happen enough, so they get into trouble.

As men, as athletes especially, we don’t like to talk about love. We talk about brotherhood and all that, but not love. But it’s the most important thing in a child’s life. More important than the kind of school you go to, or what neighborhood you live in, or even if you grow up around drugs and violence. If you are loved, you’ll make it out.

“If you are loved, you’ll make it out.” This blog post struck me for its poignancy and its truth. I have been mentoring two young ladies for three years now. Neither young lady has her father in the picture. Neither of them are wealthy. One of their mothers is a cleaning lady, and the other one’s mother works as a cashier at Wal-Mart. Still, they are amazing, intelligent, talented young women and from the get-go, I would tell my husband and my family that I don’t worry too much about either of them, because it is obvious to me that they are loved. There is no doubt in my mind, that both young women are loved openly and fiercely by their mothers and by their families, and so, from the first time of meeting both of them, I knew that they would be okay. I am just so happy to add to their brimming pots of love, and I am so grateful that they add to my own pot, by loving me back.

If you are loved, you’ll make it out. It always comes down to love, doesn’t it? That’s the “why”. That’s “the how” about anything in life. Just love. Just be love. If you don’t feel like you are loved, then just start loving. It’ll come back to you tenfold. Giving love, automatically starts this miraculous boomerang phenomenon, so that when you give your love away, before you know it, you’ll get whacked in the head with more love than you know what to do with. Just don’t be stingy with your love. Don’t be conditional with your love. Just start loving. Love yourself. Love your life. Love Life. Love everything in your life, even the stuff that’s hard to love. Embody love, because underneath all of the stories, and all of the projections, and all of the insecurities, and all of the scramblings, and all of the puffery, all of the suffering, that’s all there really is to anything . . . Love. Who? Love. What? Love. Why? Love. Where? Love. How? Love. Just Love.

Rest in Peace, Demaryius Thomas. Rest in Love.

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

Thank You, Thank You!

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

Happy Thanksgiving! I am incredibly grateful for this blog and I am so thankful for each of you, my faithful readers. A blog without readers is just a personal journal, and I already have a few of those. To feel a responsibility and a desire to write this blog every single morning, has been a Godsend for me. This has been particularly evident to me in the last few months, with my son’s epileptic seizures flaring up. They say that the person who saves you, is always you. If that’s the case, then the deepest part of me, who has the inclination to spill out my soul on this blog, is what saved me this fall. Thank you for being there to help me to sort out all of the pieces of my fragile heart during these last few months. Things are definitely looking up. We are making it to the other side of our family’s most frightening experience, and I feel you holding my hand through it all. Thank you for your interest, your kindness, your caring, your attention and your loyalty. I am immensely thankful for you, my readers. Thank you. Thank you. Thank you.

One of the more popular posts which I have ever written on my blog is trending again. This is the right time for it. Happy Thanksgiving. Here is the post:

Monday-Funday

Knock on Wood Poster | JUNIQE

*******I feel like my regular readers/supporters/friends/prayer team deserve an update on what has been going on in my life, and yet the superstitious part of me is terribly afraid to do so. I am knocking on wood with my other hand and both of my feet, as I write this. My son (the one who has epilepsy) has managed to string along more seizure-free days than he has done, in a long while. My son is currently on five anti-seizure, heavy-duty brain medications, but we, (with his doctor’s instructions) are carefully weaning him off at least two of these medications. This autumn has easily been the worst, most painful, scariest experience of my life, and that of our family’s history. My son has experienced more major seizures in two months, than he has had, all together, in all of the years prior, since he was diagnosed with epilepsy in 2014. My son is home with us, we are “holing up”, keeping life simple, and pleasant, and in-the-moment. It feels good. We continue to take things one day at a time. We are cautiously optimistic. We (my family and I) feel your love, and your support, and your prayers and we appreciate them so much. I didn’t know if I could continue to blog throughout this period, and yet this blog turned out to be a saving grace for me, many days, while I was going through some real darkness. And you, my beloved readers, helped to pull me out of that dark place many times, just by being here. Thank you. Thank you. Thank you. You are appreciated and loved, more than you know.

Surround yourself with positive people who will support you when... |  Picture Quotes

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

Epilepsy Awareness Month

Credit: Epilepsy Foundation

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:

https://www.epilepsy.com/living-epilepsy/seizure-first-aid-and-safety

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.

Not ok

Image
credit: @3dLooks, Twitter

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.

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.

Kurt Vonnegut Quote: “Here we are, trapped in the amber of the moment. There  is no

Night Seasons

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

There’s a few good things that are interesting to note, when you are going through one of your “night seasons”, as my aunt calls it. First of all, it’s the numbness. My mom used to call this “God’s anesthesia”. Yesterday, after my son’s seizure, while I had a few periods of crying jags and deep sadness, mostly, I was numb. I felt mostly calm and numb, and this was not caused by any kind of chemical outside of my body. When you go through a trauma, usually your merciful body numbs you right up, so that you can handle whatever you need to do. I think that this is a really nice standard feature of our bodies. I deeply appreciate the initial numbness.

Another thing that your night seasons show you, is that there are so many people who love you and who you can lean on. When you have several people in your life who you can call and/or you can text, and you can feel their deep care and empathy, it means the world. I think that I have friends of every religion praying for us right now, and this feels so great. Yesterday, one of my friends told me that her entire Baptist Church’s prayer warriors were “on it”, and another one of my more “new age” friends told me that she believes that people with epilepsy are getting downloads from God which the rest of us just can’t handle. She told me that my son is probably one of the most enlightened people on Earth. I don’t know if this is true, but all of the prayers and the insights brought me comfort. All of them did. God has many channels. Don’t ever be afraid of saying “the wrong thing” to someone who is hurting. I can always tell true care, over indifferent judgment and arrogance, and that’s never in the words being said. Ignorance being delivered with love, can be cleansed down to just the “love” part. Always err on the side of reaching out. I appreciate all of the love and the prayers from everyone, including my beloved readers of this blog. It sustains me. Thank you. Thank you. Thank you.

The final insight about your night seasons, is that you get the reminder that people are mostly kind. Most people don’t want to witness other people’s pain. We had so much kindness bestowed on us yesterday, by perfect strangers, as we often do, when my son has a seizure in public. People want to help. People want to show you that they care. It’s traumatizing to witness a seizure, but people seem to overcome their fears, to act with deep concern and warmth and tenderness. Did I ever mention that EMT people are some of my favorite people on this Earth? They always make my son feel so good, and just like he is one of the “regular guys.” Yesterday, the EMTs got a good laugh with my son, when they reminded him that when my son was first coming out of his seizure, and they asked him who is president, in his hazy confusion, he said, “Lamar Jackson” (who is the quarterback for the Ravens). They all, including my son, got a big giggle out of that one. The EMTs made my son feel like he is a real stud (because he’s a big gym rat, who also attends a prestigious university), just when my son needed it most. These simple, empathic kindnesses are noticed by me, always. Always.

When you are in your night seasons, numbness, your own spirituality (and a big helping of others’ spirituality), and the overall kindness of strangers is what gets you through to the sunshine right around the bend. God has many channels. Yourself, your loved ones, and often perfect strangers, are the passageways, which God uses to get you safely to where the sun rises again. We are in good hands – our own hands, the loving hands of our friends and family, and the kind, empathic hands of strangers, which all come together to form the biggest hands of all. And these Big Hands are firmly and securely holding all of us with Love. This I know.

Epilepsy Awareness

49 Seizures ideas | epilepsy awareness, seizures, epilepsy

Unfortunately, my youngest son suffered another major seizure last night. He is okay. We are okay. But today is a day for me to be quiet with myself, and with my son, and with my family. We’ll take your prayers and loving thoughts, in buckets. Thank you for your support. xo

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