allie's story

Written by Becky Daniel, Allie's mom

My daughter Alexandra—Allie—now seventeen, had her first grand mal seizure when she was nine years old. We had embarked on a family trip driving up to Prince Edward Island through Maine. Allie was sitting in the back seat next to her two older sisters watching a DVD movie. Feeling drowsy, Allie nodded off. It was around 6:30 in the morning and we’d been on the road for over an hour. Suddenly, her sister Hanna, who was seated in the middle, felt Allie trembling. Allie began struggling for air and her eyes rolled back into her head. Hanna started screaming, crying and yelling Allie's name. My husband and I were jolted by the noises coming from the back seat. Immediately, he pulled off to the side of the road and ran over to open Allie's car door to see what the hell was happening to her. I was in shock, having never seen a seizure before, frightened that my daughter must be dying for some unknown reason that I couldn't imagine. We laid her out on the ground watching her arms and feet flail. She appeared to be choking on her tongue and she was drooling. Her eyes were blinking over and over and rolling back into her head. Crying and scared, I was holding her and talking to her, trying to let her know that I was there, that it was going to be fine, though not really understanding what was happening to her at all. My husband cradled her head so she wouldn't keep banging it on the ground. Hanna, still in shock, sat in the back seat crying while my oldest, courageous daughter, Aimee, grabbed the cell phone and called 911.

Thankfully, a nurse on her way to work at the Calais hospital noticed all of us huddled on the embankment. She pulled her car up behind us and offered to help. What seemed like a lifetime was really about a three to four minute seizure. We scooped Allie’s limp, lethargic body back into the car and follow the nurse to the hospital.

In the emergency room, after hooking her up to a heart monitor, giving her an IV and observing her while she woke up, they concluded that she’d had a grand mal seizure. They sent us out with a prescription for Trileptol and a recommendation to see a neurologist for continued testing in hopes of learning why this happened to our daughter.

We cancelled our vacation plans, packed our family back into the car, turned it around, and switched seats sending Aimee to the front while I cradled my exhausted, lethargic daughter in the back seat and consoled Hanna, who was still worried about her little sister.

Once home we watched Allie continue to have fifteen to thirty partial seizures a day for which she tried many, many drug combinations. She was admitted to Maine Medical Center and traveled by ambulance to Boston Children's Hospital for a long-term electroencephalogram (EEG), PET Scan, and several other tests. After almost two weeks of tests trying to answer why Allie suffered so many seizures so quickly, we got no definite answers. We came home with a drug combination that helped to control most of her seizures.

After living with this for several years Allie had another set of breakthrough seizure clusters and had to be readmitted to Boston Children's Hospital for more long term monitoring, again with no answers. Allie's doctor then asked her to try an experimental MEG test for additional answers. Again, we could not find any root cause for Allie's seizures, and this is where we find ourselves today.

Allie’s seizure's now are mostly controlled by a drug combination of Depakote, Lamictal and Vimpat, and we feel very lucky that she hasn't had a breakthrough, grand mal seizure since 2010. Although she continues to have focal seizures a few times a week, her meds seem to be working fairly well.

Please share this story in honor of international epilepsy awareness month.
Give to cure epilepsy: http://www.calivnscure.com

Lovely Allie

beauty and terror

Let everything happen to you. Beauty and terror. Just keep going. No feeling is final.
 

— Rainer Maria Rilke

photo by Michael Kolster

the wisdom i see in leaves of grass

This is what you shall do; Love the earth and sun and the animals, despise riches, give alms to every one that asks, stand up for the stupid and crazy, devote your income and labor to others, hate tyrants, argue not concerning God, have patience and indulgence toward the people, take off your hat to nothing known or unknown or to any man or number of men, go freely with powerful uneducated persons and with the young and with the mothers of families, read these leaves in the open air every season of every year of your life, re-examine all you have been told at school or church or in any book, dismiss whatever insults your own soul, and your very flesh shall be a great poem and have the richest fluency not only in its words but in the silent lines of its lips and face and between the lashes of your eyes and in every motion and joint of your body.

—Walt Whitman, from the preface of Leaves of Grass

Read the entire preface here.

photo by Michael Kolster

this little enigma of mine

Every weekend feels much like the previous one, like in that movie Groundhog Day, only things don’t seem to get better, we don’t learn what we can do differently to improve our lives or figure out this little enigma of ours that we call Calvin. For years it’s been the same old same old monotonous weekends during which the most exciting thing we do is to get lattes at the coffee shop up the road and go for a scenic drive. Calvin is nearly impossible to take anywhere without running into his stubborn refusal to walk where we want to take him.

“Let’s do something fun this weekend,” Michael says to me over scrambled eggs and toasted bagels.
“Like what?” I reply, sipping my lukewarm coffee.
“I don’t know.” He adds.
“I don’t know either,” I say, resigned, noting Calvin’s crazy behavior that makes already difficult outings even harder.

Calvin had enough energy this morning to power a rocket to the moon or, in my case, send me to hell and back. What I mean to say is that he was beyond hyper, like some three-and-a-half foot crack addict. His manic behavior has continued throughout the morning and into the afternoon, with bouts of hysterical laughing, coughing and hyperventilation followed by odd space-outs and catatonic staring at his hands.

I wonder if my son is becoming schizophrenic, wonder too if he is haunted by his behavior as much as I am. I feel a seizure coming on even though it is only day five since his last one, only 1/16th as long as he went between seizures in late summer.

He’s in his johnny-jump-up right now, spinning, laughing, screeching and cracked like a nut. He’s getting stronger, he’s getting bigger and I am beginning to wonder how I am going to manage this kid in a few more years, after a he puts on a few more pounds and few more inches. As it is right now, when he is in what I think might be distress, he yanks my hair so hard he twists my head. Sometimes he grabs my throat and I fear he’ll choke me. He clutches my head and drags his teeth hard and painful across my face, though so far I have escaped serious injury. I figure he’s just trying to tell me something—perhaps that he feels a seizure coming on—but, alas, there is nothing that I can do beyond trying to remain calm, which much of the time I find difficult to say the least. That's when Michael comes to the rescue like some superhero.

The kid is a tangled mess of nerves, a puzzle missing most of its pieces, a little brain and body awash in seizures and drugs. Calvin: my humpty dumpty kid. All I wish for is to be able to put him back together again, this little enigma of mine.

readers rock my world

If Calvin could somehow choose anyone in the world to be his mom, there is no one else on the face of this entire blue marble that would be a better nurse, a more conscientious caregiver, a more fierce and committed advocate, or simply a more profoundly loving and patient mom than the one he has tonight. And I honestly think he knows that. You should probably also know that doing what you do also helps some of the rest of us find something a little better inside ourselves. So thanks.

—Jim

My husband and I just spent the morning at my daughter's neurologist's office trying to find out why there seems to be only three states of being for my girl: having seizures, bat-shit crazy because of the meds, or a zombie because of the meds. I hate them all. I miss my pre-epilepsy daughter. And I'm sick of it. I wish you and I had other options.

—Lisa

Wish I were there to bring up inappropriate topics at the dinner table and make you laugh ... for just a minute or two. Thinking of you here in SF.

—John

Listening and holding you close at heart ... your honesty, raw emotion and COURAGE blow me away. Wishing you moments of peace and grace.

—Sel

Oh, dear. Time to stop lurking and 'fess up—I am listening too, from Zurich. I am the mom of three n/t (neurotypical) kids and here I am, fascinated, terrified, moved, by what you write. My kids see me reading and I explain to them why and what I am reading ... so we are all listening.

—Danielle

Even though you may feel alone, you are not. I get it. I understand your words. I am here for you any time, any day.
 

—Karen

I'm listening from far away and feeling. ciao

—Federica

love you dearly. I am grateful for the richness and depth you have given me.

—KIM

I had a friend who [had uncontrolled epilepsy] so I have great empathy. She "looked" normal, so she had to deal not only with the idea she was "disabled" and gave up a lot of her dreams (she'd been accepted to John Hopkins to study nursing, her lifelong dream, couldn't drive because of the nature of her disease's presentation, she couldn't hold a job) but also had to deal with people who questioned her disability (until they saw her seize.) Education helps everyone and you are one of the educators.

—Agy 

I awoke at 2 am in a terrible nightmare so I went upstairs to snuggle in Cole's bed. I still could not fall asleep so I pulled out my phone and read some of your older posts. Well, I was finally able to fall asleep and I had the sweetest dream about Calvin, in my dream he was happy and snugly and was trying to tell us that he was happy. It was so dear and I didn't want to wake up so I continued hitting the snooze button on my phone. I told the boys about my dream because they ask me regularly how Conor's friend Calvin is doing. it is very sweet. We lift you all up in prayer every single day, Cole loves to pray specifically for Calvin when he goes to bed. He couples Calvin and Conor in the same prayer, that they would both be able to walk and one day talk and just be happy with no struggles.

—Emi

Thank you to all of my readers. You give me strength and help to make my world go round.

 

reality button: "on"

Sometimes I feel at the end of my frazzled rope struggling to analyze the relationship between Calvin’s seizure drugs, his dietary protocol, the drugs’ side effects, shifts in his seizure patterns, changes in his appetite and behavior. At times the worry and effort to keep all of these details in balance leaves little space in my mind for remembering things like calling my mother, making time for friends, relaxing, paying attention to the dog and to my husband and to various other tasks at hand. Things inevitably slip through the cracks and I find myself bereft of energy, hope and enthusiasm.

But then reality kicks me in the teeth, rains on my pity party (thankfully) and, by slapping me silly, resets my reality button back to where it should be: in the “on” position.

On the news this morning I heard the story of a mother who had tried to rescue her sons, aged two and four, from their flooded car on Staten Island. After she’d gotten them out of their car seats, the water having risen above their heads, a large wave had swept the two little boys away. Later, in the wake of her attempt to enlist others, who spurned her cries for help in finding them, the toddlers’ lifeless bodies were found.

After hearing the story I said to my husband, as I nursed a cup of hot coffee, “We’re so lucky ... we are warm and dry and fed.” And with a sorrowful face and an ache in my heart I realized that Michael and I and our eight-year-old boy Calvin, who is retarded and non-verbal, cannot walk without assistance, wears diapers, must be spoon-fed, is haunted by seizures and debilitated by powerful anticonvulsant drugs, are—in many ways—lucky. And I think of that grieving mother and the scores of others who live in harms way, who've lost their homes, who don’t have enough to eat, who shiver in the dark, whose precious loved ones have died, and I’m humbled by the ridiculous reality of our fortune.

Reality button: “on.” Now ... how can I help?

photo by Mark Lennihan / AP

a single voice

It is a small thing—perhaps seemingly insignificant to someone who might think that a single voice doesn’t matter—the simple telling of a story. Well it does matter. A solitary voice with a compelling story or message, becomes two, becomes four, becomes eight and blossoms, exponentially, into a beautiful tapestry of resonant voices, a critical mass—a movement.

I’ve seen it happen. A mother of a child might be brought to tears by the story of her daughter, her son, and so she shares that story with her friends. A father might read about an incidental moment in time that reminded him of his childhood, and so he passes the story on. A woman might linger on words that made her think of her father or mother—or perhaps reflect on being a parent—then go on to share that story with siblings and friends. A parent, a student, a friend, an acquaintance, might be reminded of the simple joys and pleasures in life that they were taking for granted, and be moved to use their voice to share that message with loved ones. Or perhaps a harrowing story of a little boy suffering countless seizures makes someone realize how bad, prevalent and lethal epilepsy is, having never been aware before, and that person compassionately shares the story with everyone they know.

Your voice is a single voice, it’s true, but it can become a million strong, three million strong, three hundred million strong, if you simply share a story, pass on a message.

In the spirit of epilepsy awareness month, November, I’m asking a small favor. Next time you read a post on Calvin’s Story, if it moves you, makes you reflect or reminisce, laugh or cry, please, please share it with others. It’s a very worthy cause. Your voice will move mountains, and whether you know it or not, you will be helping to find a cure for epilepsy, this devastatingly obscure disorder that afflicts and kills more people than breast cancer. Didn’t know that? There’s one good reason that Calvin and I need your voice. Because we need a cure. He can't do it by himself—needs a leg up—and you can give it to him, and to millions of others and their families.

So, take that one, simple step that you might have considered time and again but never did, which is to forward the link to Calvin's Story via email, click that Twitter or Facebook button below this post, or click the Share button under the Calvin’s Story link on your Facebook page. Perhaps include a few words about why you're sharing it. It’s that easy. Those who have done so already have sparked a critical mass by doubling, tripling, even quadrupling readership and, thus, epilepsy awareness. Doing so means the world to me, because—like many of you might imagine—Calvin does too.

Give to cure epilepsy: http://www.calvinscure.com

Originally published 01.11.11.

photo by Michael Kolster