Sunday, August 29, 2010


The last few days have been heavy. I feel like I have been cramming for final exams, even though there was not a test. Trying to fit every piece of information into your already overloaded brain. Words like missense, truncation, channelopathy and dysautonomia coming through in your dreams.

We learned a lot at the IDEA League conference. Even though we listened to lectures and I had a sense of de-ja-vu about being back at medical conferences, like I was working again, we came out with more than information. We came out with friends. Some of these people will be our life long friends and even though we don't live in the same state, town, or even country; we will share in the joys and triumphs and also the trials and sorrows it comes from raising a child with Dravet Syndrome. Here is a picture of the group who are lucky, we all got diagnoses fairly early. Kids in this group range from 10 months to three years old.It was liberating to have multiple people who understood our version of "normal". To swap horror stories and laughter felt great. We have not been social for a while, for obvious reasons, and we are both social people. It was kind of an out-of-body experience to witness multiple seizures and everyone knew what they were doing. One child at the conference accidently pulled the fire alarm and we all started to worry about the same things. The noise, the flashing lights, we will have to go outside-get the glasses and hat, bring the cooling vest. It was almost comical. At least we can laugh at ourselves.

I think the main thing that I will bring home from the conference is strength. Strength to keep fighting. Strength from good people supporting each other when you feel like you are so alone. Strength to know that I have resources now. I am exhausted, kind of similar to after finals week, glad that it's over...but realizing that the knowledge you gained will probably help you someday.Cole had a blast with his grandparents. He had an incredible week, with no major seizures! When we walked in the door this afternoon, saw his smiling face and heard his laugh, we felt strengthened to fight for him-because he deserves it...just like every kid out there with Dravet and other rare disorders.

In the words of my lovely friend Vanessa from Australia..."You are my friend. I love you. You can come to my house anytime...and I will make you a milkshake". Each of you is welcome into our world, virtual or physical-and I can make a mean milkshake. Strawberry is Vanessa's favorite. Find the strength to fight for her.

Tuesday, August 24, 2010

On The Road-AGAIN!

Brian had to go down south for work this weekend, so we took a leap of faith and made a road trip out of it. We have not taken Cole anywhere overnight, or outside of the valley for that matter, for over 6 months. We packed up the scales, meds and everything else we would need for a couple of days. Cole ended up with one and a half suitcases, a cooler and a stroller. Wow, there is a lot of stuff that you have to have to take care of him.

We travelled at night on the way down and I found that it was easier, as Cole could not see cars whizzing by us and did not have to look at the fast-passing landscape. However, I was not very smart and told him who we were going to see. Every five seconds you would hear, "Mama?" If I didn't answer, he would get upset.

"Yes, Cole?"

"Going to see Grandpa!"

There were variations that included Grandma and toys, but needless to say, the boy was excited.

He slept for only a little over an hour because of the anticipation. At midnight, he was still wide awake, wanting to know when we got to see Grandpa. If he knew, "Are we there yet?" I am sure that would have been included in his repertoire.

He did great. Much better than I expected. His absence seizures definitely increased, but no drops, partials or tonics. He still had some of his regular night time problems with atonics and myoclonics. It was liberating to not have to worry about him falling on slate floors. He had not been in that house since February when his drops were at their peak and the helmet was still an essential part of daily life.

It was super hot outside, so we did not have any kind of activity. We were going to be brave and try the pool. He has not been swimming since January, but it was too much of a risk. So, even though we did not do anything but stay in the house, we were successful. It was a semi-familiar environment, with good air conditioning. He had a blast!

The drive home was much harder, as it was the middle of the day and he could see out of the window. He got restless fast and kept on wanting to get out of his car seat. All in all though, it was a good experience. It gives me courage to try it again soon.

It was also great practice to be with Grandma and Grandpa and teach them some of his routines. They get to hang out with him while Brian and I go to the IDEA conference this week. It won't be a break from reality, or even a vacation, but we are excited to learn! The last time both of us were gone for this long, Cole was 6 months old. However, if anyone can deal with seizures, or even the hospital, it is my parents. They are professionals :)

Tuesday, August 17, 2010


The last week had some HIGH highs and some LOW lows.

One really bright spot was our connection to the IDEA league. Already we have met incredible people. We also signed up for a conference, where we will get to meet Dr Dravet herself! The timing is impeccable, we signed up three days before registration closed. After working with non-profits for years, I am impressed at how organized, professional, and recognized IDEA is after only being around for 5 years. The right people are on the Board of Directors and we have already met some of them.

Something that has really hit us is how lucky we are to have this diagnosis relatively early. All of that research, and pushing doctors buttons was worth it. We are "those parents". Some people do not get diagnosed until they are much older and have already been put on sodium channel drugs. We are blessed to have been guided to "just say no" when those particular medications came up in conversations. We realize that this is a spectrum disorder and each kid is different. It is hard to know exactly what Cole's future will look like. We are so grateful for the internet and organizations like IDEA, which bring people like us together for information, validation and support.

Dravet comes from a genetic problem, like Down Syndrome, which our sweet friend Emma has. At this time, there is no surgery, medication or voodoo for gene repair. Only meds and therapies to treat symptoms. So, at this time, we know this will not go away. However, with your support and helping foundations like Bertrand's we can help to fund genetic research that can give these kids a better chance at life, and hope to their parents. Some people have asked, "What can we do?"; honestly, give a donation-even if it is a dollar. Every dollar helps kids just like Cole. Bertrand's parents are some of our greatest friends and this fund is a wonderful way to help.

Brian and I know that we have things to offer other parents going through something like this, and have found great satisfaction in our little Family Support Group. However, now is the time that we need support...and boy have we gotten it. Within 36 hours of the Dravet diagnosis, we were contacted by multiple families. Some who had already been reading this blog. We know that these people will become just as important and special to us, as the others in our Family Support Group.

Go to the IDEA website and learn more about Dravet. Knoweldge is power. The more people that know about it, the more they can educate others-and the world. Just an idea :)

Monday, August 16, 2010


He did it!

Most people in this world could not work at least 60 hours a week and go to graduate school.

Brian did it for three a whole bunch of other things that were on his plate.

We are SO proud of him (and so glad that it's over)!I am not sure that this is our last college graduation. I do know that neither of us will be going back anytime soon, but never say never. :)
Doctorate? Finally finishing my Masters? I don't even want to think about it!

To the newest Executive Master of Public Administration-thanks for the blood, sweat and tears put in to this degree. We love you!Mommy and Cole

Thursday, August 12, 2010


As I went in to get Cole up from his nap yesterday-
I opened the door and he jumped up In his crib, threw out his arms, and yelled, "SA-PRIZE!"

I just started to giggle ;)

It felt so nice after the crummy day I had been having.

Yes, my sweet boy, you are a surprise.

Laughter-it really is the best medicine.

Tuesday, August 10, 2010

Warrior Spirit

Yesterday, everything became official. Genetic testing has confirmed that Cole has been diagnosed with Dravet Syndrome, a rare form of epilepsy. This diagnosis, to someone that has seizures, is equivalent to cancer.

I could go on and on about sodium channels, proteins and other complex stuff related to this, but the bottom line is; things have changed, yet again, forever.

We know that epilepsy is not rare, it is something that we constantly try to tell people. More people are diagnosed with epilepsy each year than breast cancer. You have a 1 in 40,000 chance of having Dravet, however, so we have become connected with a new group of warriors-Rare Diseases.

It varies, the prognosis, from child to child that is diagnosed with Dravet. There are some that end up retaining skills, most regress. This means that as time goes by, Cole will get worse. He can lose functions and abilities that he has right now. Up to the point that he will be completely dependent for the rest of his life.

At this time, this means that Cole will always have seizures. He most likely will not be able to attend regular school. He won't be able to go on camping trips, go on a mission, live on his own, get married, have children, and a whole bunch of little things in between. He will struggle with learning, and his speech will probably always be delayed. He may even develop orthopedic problems and lose muscle mass. Time to add Physical Therapy to our list. Some have problems relating to others, so it could turn out that our social butterfly will regress and become similar to someone that has Asperger's.

We know that things can change. With research, hopefully they can find a cure, or maybe better medications. We know from 30 years of experience that a diagnosis isn't everything. We could tell quite a few doctors, "Take that!"; who said that I would be dead or severely retarded. We are preparing for the worst and hoping for the best.

At this time it seems that Cole also has some other diagnosis that has not been categorized. With the gene mutation, EEG (which has gotten worse by the way), seizure pattern and everything else related to Dravet-he fits the bill. However, he also has atypical symptoms. His sensitivity to light, overstimulation problems, eye problems and other things are leading the physicians to believe that there is also something else going on. It is most likely that Cole will never get full control of his seizures through medication and it is possible that he will remain on the ketogenic diet for a long time, instead of two years.

We need to gather our warrior courage and fight. Please e-mail, call and send letters to your congressmen and women about The Creating Hope Act 2010, S 3967 . This will allow pharmaceutical companies to have an incentive to research drugs for rare childhood diseases. Cole deserves your support. Our other friends in the special needs group do too. Our friend, Bertrand, has an undiagnosed rare disease. His mom explains the bill in more detail. If you have been lurking around, just reading our story, today is the time to take action. I don't know how long I will have Cole, but I know that I want him to have the best life possible, and this bill might be a start.

It could mean that Cole could go to a birthday party, and have friends. We were brave and tried to go to one yesterday. He lasted around 10 minutes and had a tonic clonic seizure. Please join us in our fight.

Monday, August 9, 2010


It is time.

I have been working on this particular post for some time. It just got too painful and I put it away. Everything felt so disjointed. Yet, one of my friends inspired me with the way she takes up a cause. Sometimes it's hard to have a voice, an opinion, and feel like no one is listening. So, this is more for myself than anyone else. I guess that now is better than never.

I know emotions. I studied them in school, felt each one and had to define for myself what "joy" or "despair" feel like for me. One significant emotion that has come up in my life is pain. Emotional and physical.

When I was working with sex offenders for years I could not "get" why some of these people would intentionally hurt themselves. Cutting, digging, scratching, physically harming themselves. Over time I learned that it was because it is easier to feel physical pain than emotional pain. To escape the emotional pain, they would replace it with something that they could understand. "I hurt, because...."

I have never been to that point where I am ready to physically harm myself to not feel anymore; but I understand the concept.

Someone with special needs that has their faculties about them (most of the time :) ) has to go through a process of grieving. You all know about the grief cycle. Anger, denial, bargaining, yada yada. Sometimes you plow through those emotions really fast, other times you are stuck. I think that I have been stuck.

It is really hard to get empathy from doctors, friends and yes, even family when you look and act perfectly fine the vast majority of the time. I don't have burns from a fire, a bald head from chemo, droopy eyes, or a disfigured limb. What is malfunctioning is hidden away underneath my unruly hair. If there is not a physical reminder, most people just slip into the "out of sight, out of mind' mode. I think it makes being understood harder. You want people to treat you like an equal, but you want them to recognize your struggle. It IS a struggle. A daily one. I have to think about my body all day, every day. If I did not, I would be doing something stupid and would probably be dead. If I am driving, I have to constantly be aware of how I feel, what I have eaten, etc. If I am in the grocery store, I have to scan and look for the exits and the best route to get out of there if something happens. If I simply want to watch a movie with my husband, I have to weigh the risk of possibly not getting enough sleep and it affecting the rest of my day. I want to lose weight, but I can't exercise, because it has caused seizures. The most minor, stupid details need to be thought through. Simple things like boating, concerts, hiking, or even staying up late can ostracize you. I gets exhausting when I have to think about my health and think about Cole constantly. It is painful to not feel understood. Even by those who you think should automatically get it because they are closest to you.

I tried to be the perfect child, to somehow make up for all of my flaws. The money and time that my parents spent, trying to fix me. I obeyed curfew, never snuck out. Did most everything that was asked of me. I even obeyed the speed limit, thinking it would help. I got excellent grades. Tried to excel in everything that I could control. I was even the first in my family to graduate from college, something that I felt was a real achievement. Somehow, I felt like it was never enough and that I should try harder.

I am not sure why I was born with an adventurous spirit and a limited body. Another question I'll ask when I get to the other side. I have a real desire to do things that are dangerous like sky diving, flying an airplane, bungee jumping and scuba diving. There are plenty of people out there that would say, "No way! I like my feet on the floor." Can't do this stuff....but it doesn't mean I don't want to. Sometimes I really wish that I could just put on my tennis shoes and run, just for the fun of it. I used to love performing. It was something that I felt I was good at. Musicals, theatre, violin, piano, voice-and I have had seizures at all of them. Why didn't I quit? I don't know! Eventually I realized that it was just too much of a risk and had to give those things up, but at the time I just kept plowing through. Was I stupid or determined? I'm not sure. It would be easier if I never wanted to stand on a stage at all. I think it is supposed to teach me patience...or something. Most people would not put themselves in a situation where they knew the chance of going unconscious, shaking and peeing their pants was 50/50; but I guess I am not most people.

Getting ready to tell someone that you are dating that you have epilepsy is one of the hardest things imaginable emotionally. Especially when you have been rejected before "suddenly" after you have spilled the big secret. "Will they still like me?", was an actual valid concern. I had good experiences and bad experiences out there and I am SO glad that I never (knock on wood) have to go through that again. The judgment, the anxiety, the loss. I have found an eternal companion that has committed to be with me forever-and for that I am forever grateful.

I remember once when I had a particular bad fall when I went unconscious at the beginning of a seizure. I was walking down the street on my college campus. I hit the pavement hard and ended up with a fat lip and a black eye. A boy from my home town that had asked me out a couple of times was recruited to drive the invalid back to the farm. That was the most awkward ride ever. Two and a half hours of looking out of one eye at the road in silence. He never asked me out again. Or the boy that told me he was breaking up with me because I could not run a marathon? That was awesome. I have a bunch of these stories.

I did not get to go to my prom because I had a seizure minutes before my date got to the door. I, unfortunately had previously had a seizure at a school dance. I had tried so hard this day to just take it easy, even missing the morning activity. This was my first love and I still remember the anticipation and excitement. Memories like these have been marred by illness. Luckily, this particular experience was replaced by even better memories, much more exciting than a gym full of sweaty people. A lot of these stories did not have happy endings though.

Loneliness is something that I have felt over and over again. Whether you are "different" or not, I think everyone experiences times when they are lonely.

When I received the answer that I was not supposed to go on a mission-it devastated me. I know now that I probably would have had a stroke (or worse), and that I was supposed to move to Hawaii; but in the moment I was so upset. Why couldn't I do something that was SO good...just because of my body? Realizing that Cole is going to go through the same thing is hard.

I did some stupid stuff growing up. I seemed to have a different picture of myself than others did. I would run for elections for student government EVERY year. I never got voted in, except my seventh grade year, the first in junior high when groups and cliques had not been established yet. I just kept trying, probably to the dismay of my opponents. Why didn't anyone tell me I looked like an idiot? Would I have even listened? The rejection year after year was awful, but I just got back up and tried again. Sometimes I can be so stubborn, it hinders me.

I was one of those girls that secretly worshipped the cheerleaders and the dance team. I knew all of the routines and can still do most of the cheers today-umpteen years later. (I can remember the "Fine and Mighty Pirates" but can't remember what I had for breakfast yesterday...go figure!) I tried out for the dance team in 9th grade. I had a seizure at the try out. I still made it-I have a hunch it had to do with some other people asking/begging for mercy on my behalf. To have your peers watch you lose complete control of your body is hard on a teenager. It's like putting a sign on your forehead that says, "Yep! I'm broken!" That was as close as I got to sports. No basketball, soccer, volleyball, little league or anything like that for me. I had my music, but even that got taken away because of my health. It is so funny now that one of my best friends was one of those girls. I told her a while ago that I totally wanted to be her in high school. She just laughed and told me that it was not that great and she wished she did not do those things at all, she just wanted to be normal, like me! How funny is it that people all have different perspectives. We all want what we can't have. Maybe if I did not have limitations, my wants would be totally different.

To have my driving privileges taken away in high school was devastating. I lived 45 minutes away from the school and had to go back to riding the bus for 2 hours, as a senior. Not the coolest thing that could happen. I had to be driven by someone younger than me to my early morning choir class. I felt my freedom slipping away.

I was a choir geek. It was one place that I felt like I belonged. When I graduated from high school, I knew that I wanted to be a music therapist and help others heal through the power of music. Even though I had to quit playing the violin because my body could not handle the stress, my senior year. I still felt like I could focus on singing and become one of the greatest music therapists ever. I had a seizure during one of my tests in my music theory class, my second semester in college. A girl that knew where I lived offered to take me home. Don't remember a thing. My professor told me that I could not be in the program. Another rejection.

I grew up on a farm. I felt that I only had one thing that bonded me to my dad; horses. He loved them, I loved them. No one else in my family really cared either way about horses. Add rodeo queen to the list of things that I wanted to be :) I have always had the dream to open a facility for struggling teenagers and kids with special needs. I even drew up the blueprints in college, eagerly showing my dad the floor plan of the barn, including an office just for him. I named it Lotus Ranch, because of the symbolism of the lotus flower. Every morning it rises up from under water and blooms. It is also the symbol for eternal life. I have gotten my certification as an Equine Assisted Growth and Learning Therapist. Horses don't lie, and using them in therapy is incredible. However, they are powerful, dangerous animals. I have had two seizures around horses. You can not put yourself in the way of that large of an animal and be unconscious. So, I have given up another one of my loves. I can no longer ride horses. The dream of Lotus Ranch has been put on hold, and I must deal with the grief in its loss. I think that I fluctuate between despair and denial with this one.

The physical pain that my body goes through after having a seizure is hard to describe. My mom says that I used to tell her it was like needles were being stuck into my body and I had just been run over by a truck. After your muscles actively clench and unclench rapidly for a period of time, they will be sore. It's like Jillian Michaels on steroids. I usually have a hard time walking straight and a massive headache. The physical pain rarely lasts more than a couple of days, but the emotional pain is a lot harder to get over than sore muscles. There is a huge letdown and almost depression that you go through each and every time it happens, no matter how many times it has happened before.

The reality that my son has to go through these same things, causes me more pain. There are plenty of good times sprinkled in with the bad, but I wonder how it will shape his character. When even precious moments in my life, like giving birth, or my wedding day, have that shadow of uncertainty, "Will I make it through this?" What can I do to help him get through? I'm not sure. Sometimes it's hard to be strong. Sometimes people tell me that Cole is so lucky to have a mom that understands what he is going through. I really don't think that having some of the same difficulties makes me a superhero. Already he is going through the same things because he looks and acts normal the majority of the time. He just doesn't understand that he is being left out yet. He will, soon enough. I want to make his life as happy as it can be, to try and inspire him to push through his limitations and enjoy being alive. I just hope that I can have the courage to get him, and myself, through the painful times.

Sunday, August 1, 2010

Break From Reality

I took a little time last week to go to the annual Scentsy Convention in Denver. I did not want to leave Cole with things being as crazy as they have been, but the registration had already been paid for, would not be refunded, and Brian said it would probably be good for me to get away for a bit.

He was right.

I had almost forgotten why I love selling Scentsy so much! I was working, but it felt like a party the entire time. This trip reminded me why I do this, and why I love these products so much. This company and its founders are amazing and genuine. I have been to business conventions before, but none of them compared to, or felt as sincere as this. I had fun and learned something new everyday. I was also reminded how fragrances really can connect you with emotions and that they can be exciting!I am totally exhausted because we were constantly on-the-go, but I am so glad I went. I have not been somewhere by myself, without any family, for that long since I have been married. I love my boys, but you forget how refreshing it is to not have to be in charge of something or somebody.

There are some incredible new products coming out in September and I, for one, can't wait! Scentsy is now making hand sanitizer. It is alcohol free, moisturizing, and smells like some of our most popular scents. The new additions like Scent Paks just show that there are so many avenues to making things smell good. The new Scentsy Buddies, an incredibly cute collection of high-quality stuffed animals, are adorable. Only this company would think of combining toys and scents!

I met some great people and had a great time. It was nice to get a break from my reality. Sometimes seizures, diets, medications, tests and all of the other stuff that is part of our daily life just overtakes all of our time, emotions and strength. It is our reality. It's what we do everyday; all day and all night. We have dedicated our lives to Cole and I would not want it any other way. I just needed to be reminded to take a little time for myself so I am not constantly running on empty. I think I am going to go and turn on my warmer and think about next years convention in Texas! :)
Photos by Capture Me Candid