Blog from a Mom

Words from someone who's "been there / did that" and still "going there / doing that".

February 21

Talking about YouTube - TAVIS SMILEY | Guest: Prince - Exclusive | PBS

I often give a lot of thought to the people that have epilepsy. I don't know about you, but I come from a family of ordinary people. I don't think we will ever be held up by the masses as inspiring for too many other lives. I understand that all of us come in contact with people that are inspired by some aspect of our lives, but that isn't what I am talking about. For people with specific disabilities, and for those that help care for them, there is a certain amount of satisfaction (or inspiration) that comes from hearing about a celebrity that has walked the same path. It gives hope, and a sense of validation to know that someone with so much at stake is willing to share their experience.

On a recent quest to uncover the names of "famous people with epilepsy", I came across a video clip of Prince telling about his childhood epilepsy. It's short, and not really that moving of a story, but still, one that some may relate to.

YouTube - TAVIS SMILEY | Guest: Prince - Exclusive | PBS

There are many historical figures on the "list" of epileptics through the ages...Julius Caesar, Socrates, Alexander the Great, Napoleon, Charles Dickens, and Edgar Allen Poe to name a few. I'm always wary to believe some of the names listed because there is just no concrete evidence of their diagnois to rely upon. Recently, we were looking for professional baseball players with epilepsy and came across the names of Grover Cleveland Alexander and Buddy Bell - both with illustrious career statistics to boast. Other modern-day people with epilepsy include Neil Young, Danny Glover, and Chandra Gunn. These are only a few of the names and a Google search of "famous people with epilepsy" will easily offer endless lists.

Recently, my daughter had the opportunity to speak on a local radio station about her epilepsy. It was short and simple without the drama that some of us would add to a story. The amazing thing was that it drew out stories from others in our community that may not have shared so publicly otherwise. People were calling in to a show that wasn't asking for callers! I often feel the tension leave a parent when I share our story of epilepsy with them. There is a connection between people that share something so isolating. It is a door that opens - an opportunity to step out of an empty place, into one where there is fellowship.

I know that disclosure of epilepsy is difficult for some, and impossible for others. It is a personal decision and one that must be respected regardless of its direction. I also know that there is release in sharing. For those of us that are ordinary and even extraordinary, there is hope when others expose their vulnerability and there is freedom for ourselves when we share our stories with others.

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February 04

Celebrating a life

I was trying to avoid blogging this week. Tomorrow is the first anniversary of my father's death. I don't want to write about how much I miss him or how different life is now that he's gone. I'm trying not to think about those things too much. I do, however, feel the need to write something - and it's not related to epilepsy. I hope you'll bear with me because I would like to talk about my dad.

To me, my father was larger than life. He was John Wayne and Ronald Reagan wrapped up into one man. He was my #1 Fan. I've said that for a long time before he ever got old. Imagine the privilege of having someone in your life that thought even the smallest things you did were something special. When I was around him, I felt special. That, however, was a double-edge sword. When ever he was disappointed, he never held back. Funny, when I was a teenager I didn't worry much about that, but as an adult, it really mattered. I always loved telling him something that would make him light up with pride. I miss his enthusiasm.

My dad always loved an audience. He could talk for hours to anyone that would listen. A lot of people got tired of the same stories repeated over the years - especially in his later years. Not me. I could listen to him and it always felt like the first time I heard it. Don't get me wrong - some of his wisdom was a bit off, but he believed what he said and you at least had to think about it. It has been a very silent year.

My father barely made it past the eighth grade. That was back during the Great Depression. I think it bothered him later in life that he was not educated. The truth is, he was one of the smartest people I ever knew. I never realized how much he wanted me to go as far as I could with my own education. I didn't take it very seriously when I was younger. I felt like I gave him the gift of a lifetime when he finally got to watch me walk at my college graduation in 2006. He was 89 and I was 45, but that didn't seem to matter. In October, I'll walk again to receive my Masters degree. I hope he knows.

Dad was a simple man. He loved his work, his country, his family and his Lord. No airs, no baloney. He expected the same of everyone else - especially the no baloney part. It's funny when I think back at his uncanny knack for reading people. Although he liked most of my friends, the ones he didn't care for I really had no business hanging around. It's a shame I sometimes didn't figure that out until it was too late.

One thing I can honestly say - I have no regrets when it comes to our relationship. There was noting left unsaid or undone between us. I like being able to think about him without wondering, "What if...". I was blessed with a father I could count on. I know he wasn't perfect, but it never really mattered to me. I hope I can be as much to my own children.

Thanks Daddy. I love you.

5:03 PM GMT | Read comments(0)

January 13

Planning for the future

Here it is, almost the end of our first month of the new decade. January is never my favorite month. I am knee deep in year-end work for four companies and my mother's taxes as well. How did this happen? I was supposed to have a career in one of the gray areas - not bookkeeping! I hate dealing with money and yet that is how I make a living. Go "figure". On a brighter note, I will be celebrating my 20th wedding anniversary next week.

My daughter is about to enter high school. We are now in the process of selecting her small learning community and courses for the fall. Her high school is broken out into eight small learning communities. Each has a different career emphasis. Its purpose is to offer better focus for like-minded students to work together through high school. Somehow this is supposed to be beneficial. It sounds good in theory, but how it plays out in practice is yet to be seen. My daughter wants to be an archeologist, but there isn't a community for that.

As the mother of a teenager on the brink of choosing her future career path, I am excited about all of the possibilities. Yet, I have so much apprehension. Because my child also has epilepsy and learning challenges, I often gravitate to her limitations. I know this is counter-productive. We have always been open and honest about her strengths and weaknesses and she readily accepts new challenges with a great attitude and work ethic. That alone is far more than what some lesser-challenged students put forth. When I really think about it, maybe the playing field isn't so uneven. Okay, so she might have to skip the Jr. ROTC Aero program and it's even possible she may not get her driver's license when she turns 16 or 17. So what? Neither are high on her list of important things.

As her advocate, I have to learn to recognize when I am holding her back from opportunities to achieve. It really does take a conscious effort. In a recent meeting at school, it was suggested that she take Spanish in high school because it is the only language that offers a resource teacher under the special ed program. She wants to take German. I thought about it and said that Spanish was not in her plans and that her enthusiam for German would more than make up for the lack of a resource teacher. So, where am I going with this? I guess I'm just trying to shift my focus from my own fears to my childs aspirations. Afterall, I can only guide her - she will have to do the work and find satisfaction in her choices. What do I know anyway? I'm a philosopher living in a bookkeeper's body.

4:49 PM GMT | Read comments(0)

January 03

Happy New Year

It's been a few weeks since I could write. I hope the holidays were good for everyone. It's funny how we always say something like that - as if "the holidays" owe us something. We are always so full of expectation throughout the season. The pressure is on to meet expectations as well. It's all very stressful and silly when you stand back and look at it. Don't get me wrong - I'm right in there with everyone else, and there is a price to be paid for it. That price may be monetary for those of us that rack up our purchases on plastic. It may be physical for those of us that spend hours on end trying to do everything. Or, it may be emotional when our own hopes and expectations are not met.

So why, knowing this ahead of time, do we repeat our excesses year after year? It's like a scene out of Groundhog Day with Bill Murray. January comes with its own baggage as we quickly fall short on our ill-fated New Year's Resolutions. I wish there was a way to bottle up all of the good feelings that abound throughout the season and discard all of the excessive and unnecessary behaviors that many of us exhibit from the end of November through the first day of the New Year. If I sound cynical, I'm not. I just find the whole thing curious.

So many adults say that nothing is like it used to be - the luster is lacking. The kids, on the other hand, display the same exuberance as we did at their age. I think that we just see things through different eyes - ours, needing a little Visine from time to time. I, for one, am happy that 2010 is finally here. It has been a tough couple of years and I am sensing something special around the corner. I hope that you and your families will find peace, joy, and hope in the coming year.

4:56 PM GMT | Read comments(0)

December 17

Generic vs. Name Brand

So, I received my Christmas present from my health insurance provider. There must have been a sale on "bad news" because it seems an awful lot of people got the same gift I did. A week or so ago, I received a letter stating that as of January 1, 2010, my daughter's epilepsy medications (both of them) would no longer be part of my prescription plan unless I used the generic form of these drugs. I am more than welcome to continue using the name brands as long as I understand that I will be responsible to pick up the balance of the cost. WOW, $2400 a month and this is what I get!

Now understand that my daughter has experienced breakthrough seizures on previous meds. She takes a cocktail of two now that are working beautifully. I do not want to experiment with her medications. It's as plain and simple as that. I am not opposed to generics. Three out of the four medications that I take are generics - I buy them at Walmart for $4 a month. They work beautifully for me - however, if they didn't, I would not experience convulsive seizures or anything similar. I would be more willing to do this experiment in the summer when she is not in school, but my insurance company decided that January 1 was a better idea. I am not a happy camper.

I spent an hour on the phone yesterday because of this. The first three numbers I was given were wrong. No one seemed to know where to send me for help. Finally, I connected with a very nice lady named Sandy that worked in pharmacy customer service. She told me a few things that were helpful. First of all, she said that I could wait until after the first of the year and fill the generic prescription. I could then go back the next day and fill the name brand. They want to see that you have at least tried the generic once within a two year period. It doesn't sound right to me and hopefully I won't have to go that route. Second, she said that I should call my insurance provider and find out who takes care of authorizations and submit a letter of medical necessity from my daughter's doctor. This made more sense to me and I have put the wheels in motion to do this. I do not recommend that anyone do anything without first consulting with their own insurance company.

There has been a lot of talk lately about the generic switch. It seems to be a hot topic for many people. If you feel strongly about this issue, be sure to make your voice heard with your insurance provider. In Iowa, the Epilepsy Foundation had success in having Blue Cross / Blue Shield reverse their decision with regard to epilepsy medications. Hopefully that is a precedent that we will see followed locally. Now to me, that would truly be a Christmas present!

3:54 PM GMT | Read comments(0)

December 06

Can we add anything else???

And just when I thought I was getting a handle on my life...

Those who know me, know that I am somewhat, should I say, insane. If 4Epilepsy has its 4Es (enhance, empower, enlighten, and encourage), I have my 4Is (insanity, intensity, insecurity, and industry) I long for a lifestyle of non commitment and leisure, yet everything I do strives toward one of mayhem and stress! I've recently admitted to someone that I am aware that this is a psychological problem, but I can't fit therapy in right now. She laughed - but I was serious. The really scary thing is that I have a few friends that are actually worse then me! If I had time, I'd probably start a support group for that.

Recently, I've been faced with something that demands my immediate attention and full focus. Who has time for that??? I do. I usually choose the projects that I will become a slave to, but this time I have not been given a choice. It's not that this is something bad or particularly difficult - it's not. This is a timing issue that cannot be rearranged. I guess I've chosen to write about this because we all face a time when we have to fit the impossible into an already full (or overflowing) schedule. It is amusing to me how people at different levels of responsibility react to having things thrust upon them. I am not critical of those that are (by comparison) care free and yet stressed over having to pick up the slack once in awhile. It is a growth process - the more you do, the more you can do. I am also aware that not everyone is like me - thank goodness!

As I was checking out at the grocery store yesterday, the cashier was agitated at the previous cutomer. She then began quietly ranting about the injustices she faces at her job. I smiled and told her that she was right. It seems to me that so many more people are living in a flustered state. I then thought about the modern technology trends that were supposed to make our lives easier. They haven't. If anything, we have just used them to fit more into our lives. To an extent, that is good, but on the whole, it has created a society that lives by the 4Ts (tense, terse, trivial, and tired). Hmm, perhaps we should start a support group for that. Maybe I will, right after I schedule that therapy session.

4:23 AM GMT | Read comments(0)

November 28

The kids' table

We just got through the big Thanksgiving holiday. I spent three days cooking and preparing for a meal that lasted only a few hours. It was worth it though. I felt bad because I had to send the kids to a separate table this year. I'm not sure, but it seems like we are growing in numbers. The "kids" happen to be our twenty-something children - cousins by blood or by bond. My youngest was there too. My kitchen was crowded. The weather was mild and we had just put the finishing touches on our breezeway so I sent them out there with a card table, some tray tables, and a few chairs. We kept the kitchen door open, although there could be no visual interaction between the kids' and the adult tables. Our children could not have been happier. From our table we heard their non-stop laughter and joking. They were loud and boisterous. At one point, my mother mentioned that I should shut the door. It was then that I realized how much I was enjoying their "noise". It reminded me of the scene in The Grinch Who Stole Christmas when the Grinch's heart began to grow at the sound of the Christmas caroling. I don't think I was quite a "Grinch", but it's amazing how caught up in the preparations you can get at the risk of really missing the golden moments that are happening under your nose. I think we were all a bit envious of the youthful exchange going on in the breezeway. It was the first time I can remember wishing to be sitting a the kids' table.

3:50 PM GMT | Read comments(0)

November 19

Happy Birthday

On Saturday, we had a celebration of my daughter's 14th birthday (which was actually on Tuesday). Nothing is ever easy around me, and this event was no different. You would think that by now I would either learn to scale back or at least plan better. I haven't. One hour before the party, I still did not know how many I was expecting and my daughter's friends were all being dropped off early for one reason or another. Add to that a breezeway that has been torn apart due to water damage, my daughter's half-started room makeover, and a pile of files for our office sitting on my living room floor!

I have to say, my husband and daughter are great when I go into "get ready, company's coming" mode. I left to go shopping and the house (with the exception of my clutter, which found its way to my laundry room) transfomed into an acceptable venue for a party. When I was cleaning the breezeway, my husband asked me why I bothered - I really didn't have a good answer. Thankfully, everything always gets done and we all have a good time.

I often wonder how much of my own stressful living is transferred to my daughter. I have put an emphasis upon keeping her life as stress-free as possible, along with making sure she gets enough rest and takes her meds. We know these are her trigger areas for seizures. I have never really looked at my own behaviors as being a poor example for her, and yet, don't most daughters become their mothers??? I am going to have to rethink a few things. By always taking on the weight of the world, I am usually stretched to my wit's end. For me, it's a way of life, but for my daughter, it could prove to be too much.

12:26 PM GMT | Read comments(0)

November 08

Is she okay?

It's been six years since we learned of our daughter's epilepsy. In that time, we have tapped into some wonderful resources, met so many helpful people, and even began our own nonprofit to return the kindness. We have been educated in medications, test procedures, seizure first aid, and school accomodations. In addition, our daughter has gone from an 8-year old that thought the sun rose and set at my request to a typical "I-know-more-than-you" teen. Truthfully, I am thankful that she is transiioning into her teen years just like most of her peers - but is she?

It's hard to get inside of a teenager's head. What is she hoping for? What is she afraid of? Who really influences her thinking this week? My daughter is more open than her older sibblings were, but it is still hard to know everything. Epilepsy is an added twist to the puzzle. She wants to fit in and I want her to be safe. Our biggest issue of late is staying home alone.

If not for the epilepsy, I would have left her on her own at 12. She's responsible and unafraid to be alone. Instead, I've been dragging her to my office on her days off from school and all through the summer. She hasn't complained about the boredom, until lately. At Camp Achieve this summer, we were treated to a presentation about giving our children independence. The woman speaking had spent many years working with children with epilepsy and has witnessed the various ways we parents deal with this autonomy issue. It was an eye-opener. First, because I began to think of my baby girl as an emerging young woman. Second, because I began to look at my own actions (or inactions) toward her development in a different way. I have always considered myself a good mom - and even if it means being worried or frightened, I want to do what is best for my children. Trust me - leaving my daughter home alone really worries and frightens me!

I have found that my fears are somewhat unfounded. After discussing them with the speaker at the camp that day, she helped me to sort them out and look at the situation for what it really is - not what I made it out to be in my mind. Lately, I've been leaving my daughter home on her days off. She's doing fine and she feels that we respect her more. The what-ifs are always scratching at my mind, but when I really look at the situation and break it down, I am relieved. Thankfully, our daughter's epilepsy is well controlled with medication and she is diligent about taking it. Because of this, we are fortunate to be able to give her some space, but that doesn't make it any easier!

5:54 AM GMT | Read comments(0)