Why I ran a Marathon again. 10 years later.

Runners from across the country, even as far away as Denmark, gathered around Miles the Monster at Dover International Speedway on Saturday morning, October 21 for the seventh annual Monster Mash Marathon.

Among them was me, Julleanna Seely - 35 year old mother of three, participating in my second full marathon exactly ten years after running my first marathon.  I was one of about 200 participants running the 26.2 mile distance through Dover and Little Creek area, while another 300 ran the 13.1 mile half marathon, with all proceeds supporting the Wounded Warrior Project.

I crossed the finish line 4 hours 49 minutes and 41 seconds after the 7:00 a.m. start. At this 11 minute per mile pace, I finished almost an hour and a half after the lead female runner but I was still pleased with the result. I was hot and barely plodding along with no runners around when I came near the end, but I was rallied on those final steps of the endurance run with cheers from my children, parents, brother and mother in law at the Finish!

Knowing my family was waiting at the finish gave me the strength to push on and keep running through those long, hot final miles. My goal was to beat the time of my first marathon, which took 5 hours and 2 seconds, so I’m happy with a finish more than 10 minutes faster. I actually ran the first half of the marathon with a great time of 2 hours 12 minutes, but at mile 16 the weariness started to hit and the second half took much longer.

Much has changed since I ran the Nike Women’s Marathon 10 years ago in San Francisco, California. At that time I was 25 and married 4 years to Adrian, but we had no children yet. Running a marathon was a life goal, even though my longest race prior to the start of training in 2007 was just a 5K, which is 3.1 miles.

I always knew I would run a marathon again, but life brought many setbacks in the years that followed.I had run some over the years since, and even completed three half marathons, but I was not a consistent runner. Earlier this year, I was feeling lazy and at my heaviest I had ever been more than a year post pregnancy. A weight-loss challenge at work in the spring kick-started my desire to get healthier and run more.

When I realized this summer that October 21 would be the ten year anniversary of my big run, I knew it was time. It was my way of facing all those hardships from the past and saying…I am not beat down. I am stronger. I am better. I can do anything with Christ who strengthens me!

In late July, I set up a training program with the Runkeeper App on my phone and went from running about 15-20 miles per month to over 70 and even 117 miles in September.

THE TEN YEARS BETWEEN MY MARATHONS

It was just a few months after the first marathon, when Adrian and I found out we were expecting our first child. It was a very exciting time until an ultrasound around 20 weeks gestation revealed that our baby had a severe birth defect called Spina Bifida, myelomeningocele.  Doctors explained how the spinal cord had not formed properly and protruded from the lower back which could result in challenges including some paralysis often requiring a wheelchair for mobility, lack of bowel/bladder control, fluid build-up on the brain, possible learning delays and much more. Then they gave us the option to terminate the pregnancy. Despite the difficult news, we had also just learned our baby was a girl, and we were prepared to love and raise her, no matter the challenge.

Today, our daughter Adria is a nine-year old third grader who is precious and loved by all who know her. She is a straight A student who is actively involved in her school and community and easily recognized walking through the halls with her colorful leg braces and big smile.

A year after Adria was born, our little family faced another difficult health surprise when my 31 year old husband had a series of three grand mal seizures, causing significant physical and mental pain. Multiple tests and years of doctors visits never pin-pointed a reason for the seizures or a cure, just lots of different medications. Adrian has continued to sporadically have seizures since, often a few times a year and going 18 months seizure free at the longest period.  They were intense and painful seizures, sometimes causing major injury and hospital visits. 

Financial struggles as a result of medical expenses and a bad housing market resulted in us selling our home in Delaware in 2010 and moving to Indianapolis, Indiana. We had some great experiences there and one of the big blessings during this season was that our sweet Adria learned to use a walker for mobility at age 2, then she took her first steps without a walker just before turning 3.

But the challenges continued in early 2011 when I had a miscarriage at 10 weeks gestation that resulted in emergency surgery – a painful and heart-breaking time.   

It was not long before I became pregnant again and beautiful baby Johanna was born at the end of that year. She was healthy and a great blessing but in the early months of her life, I found myself battling a severe case of post-partum depression. In the heart of that lonely Indiana winter, Adrian had back-to-back seizures that left him unable to help much and I spent weeks of my maternity leave crying and battling health insurance issues.

Adrian’s youngest sister came to live with us and be a Nanny to the girls, so I could go back to work. She learned to clean up Johanna's regular spit up and care for Adria’s unique needs, like catheterization and putting on her leg braces. Still, the 12+ hour distance between us and our family back in Delaware was too great.

In late summer 2012, we moved back east to a charming community in Chesterfield, Virginia where we would be just 3 hours from our parents. I worked for the same company during these moves, with my sales ability allowing fairly easy transfers within Ryan Homes, one of the largest home builders in the country. Adrian really loved life in Virginia, but when his seizures reappeared in a serious way, we knew we needed the support of family just minutes away.

Only 8 months later, I took a new job with a local home builder in the town of Greenwood where our parents live and we moved back to Delaware in spring 2013. Two years later, we were blessed with a precious baby Boy. Judah was cute as could be and brought renewed life and hope to his discouraged Daddy.

My pregnancy with him was much harder on my body than the girls and I gained a lot more weight, but he was happy and healthy and my heart was full of thanks. And then life’s challenge became balancing the demands of a special needs child in school, an energetic pre-schooler, a nursing newborn and a full-time job as sole income provider!

With Adrian’s unfailing support and expertise as a stay-at-home Dad, we found a rhythm of life and 2016 was by far the most successful sales year of my career. It was also the year we decided to build our New Home, a place we would plan to stay for many years and raise our family. A home built on the same land where Adrian ran through the woods as a child. A place of hope and healing for us.

We moved into our Dream Home in March 2017.

When summer hit, and I realized that this year marked 10 years since I took on the challenge of running a full marathon, I reflected on these last 10 years. All the pain, all the trials, all the joys, all the moves, all the unknowns, all the life they have held. I felt like this season needed a book-end. I took on the challenge of a marathon before some of life’s greatest challenges came along. I was strong enough to take on the challenge now!

So I did. I woke up at 6 a.m. three mornings a week, and I ran. And on October 21, 2017 I ran 26.2 miles (with some walking) and completed my second full marathon. It was hard, but I was victorious!

As I look to the next decade of my life, I am full of HOPE.

Hope that my husband can live a seizure-free life.
Hope that my daughter Adria can continue to succeed in school and her life pursuits, not letting spina bifida hold her back.
Hope that all my children can live and grow in a consistent, stable home environment.
Hope for my own dreams of writing more and continuing to Run. 
Thank you, God, for Hope.         

Building our Home Together

It was a cold January day in 2016 when my husband and I walked through the dense woods across the street from his childhood home.

Adrian knows these woods well. They have been owned by the Seely family for generations. He spent his youth exploring, hunting, fishing and swimming in these woods and streams with his brothers and sisters.

He brought me to an area dense with briers.

"This would be a great spot for a home," Adrian said. His parent's 100+ year old farmhouse was barely visible across the field through the thick vegetation. He pointed out how the ground was high, and there were some great trees to keep and many to be removed. He pictured where the driveway would come in off the road and how far back the home should sit. He saw it all.

He had the vision.

That was the start of it. Just over a year ago, we began to pursue this new idea of building another home on the Seely farm. It almost seems surreal that here we are now, just weeks away from moving into this beautiful, new home.

And it has taken shape just as Adrian envisioned.

Our new home covered in its first snow in January 2017 - one year after we walked the property to decide where to build.

Yes, we have built before - 2 other new homes in fact. Yes, we have moved many times.

But this home. THIS HOME IS DIFFERENT.

This is the home we are building for our precious family of 5. More than that, we are building it WITH our children. We are building it TOGETHER. We are planning to raise our children in the same woods where their Daddy enjoyed countless adventures and created many memories.

Adrian designed the home, with some input from me and Monty, an expert home designer where I work. I selected most of the finishes, with Adrian's support and feedback.  And Bay to Beach Builders, where I sell new homes, is doing the hard work of managing construction. (Praise the Lord!)

Now let me tell you WHY we are building.

Looking back a year to the first week of 2016, we were extremely discouraged. It was anything but a "happy new year" when we were hit with some difficult financial news and serious health issues. It reminded me of another time when we felt life was throwing us some tough punches - Click to read "Like Blows in a Boxing Match."

One Sunday morning during this time I was at church with our 3 children. As the congregation sang together in praise and worship, I felt a touch from the Lord.

It was a passionate urging to BELIEVE that even though we were distraught and even though another year started with a bad incident like we had seen before...it would not be a bad year. No, God had the power to make it great.

My heart pounded as I walked to the front of the church with nine-month-old Judah on my hip. I shared what was on my heart with a couple in leadership, and they prayed with me. It wasn't anything super emotional or hyped up. But I took that step forward in faith, and I believe God heard that cry for help and the passionate desire for a positive change!!

In early 2016, as we were seeking God's direction, Adrian had several scriptures speak to his heart.
Months later, we wrote several of them on the framed walls of our new home. Truths to hold onto, forever built into our home.

Within weeks, we found ourselves walking through those woods and talking with his parents about our idea to build a new home within walking distance of them.

In the following months, there were countless hurdles to cross and steps to take toward acquiring the property and preparing to build. But the doors kept opening. New homes sales took off in the second quarter, and 2016 ended up being my best year of my career. Plus, we were able to sell the home that we still owned in Virginia to the family who had been renting it from us since our difficult yet miraculous sudden move in March 2013.

We currently live in a great little community, but country living is in my husband's blood. We believe the freedom and serenity of very familiar land and open space around us is the best lifestyle or "medical treatment" for his seizures. Plus, it's a wonderful environment for raising our children, especially with Adrian's parents and some of his siblings right across the street.

He is looking forward to teaching our children to fish in the stream that runs a few hundred feet behind our new house. And they'll build forts. And explore the trails looking for animal tracks. And swim in the creek. And drive golf carts and four-wheelers around the property.

It will be a good life.


Truly, we have come full circle. We are building our home next door to the home we first rented as a newly married couple 13 years ago. It belonged to Adrian's great aunt, until she passed away, and now is home to a sweet retired couple.

A lot of life and homes and moves have happened in the 13 years we've been married, but we feel so thankful and blessed for this opportunity. Not only are we building a great Home in a great spot, but our three young children are here to enjoy the experience with us.

God is answering our prayers in a big way. We have been on a wild journey, and there's still much to come, but we sincerely hope and believe this is HOME. A place to stay. A place to find peace.

Psalm 37:3-5

Trust in the Lord and do good; dwell in the land and feed on His faithfulness.

Delight yourself also in the Lord, and He shall give you the desires of your heart.

Commit your way to the Lord, Trust also in Him and He shall bring it to pass.

Health Insurance Disaster...and Trump

A week has passed now, since I stayed awake until 3 a.m. on Wednesday watching TV.  Like millions of Americans, I was fascinated by the presidential election results and the response of the media as Donald Trump took the lead and eventually gave his victory speech.

I was among those who were thankful for this result, even though I live in Delaware, a state that's gone Democratic blue in every election since I was 10 years old. But noone really cares about Delaware's 3 electoral votes. Still, I vote.

I am not one of those Republicans who thinks Hillary is evil. She has merit, experience and good leadership qualities. And sure, I believe a female president would be a great step for our country. But, I fear her liberal agenda and what it would mean to people like me - the hard-working middle class Americans who pay big taxes and make this country tick.

The Healthcare Factor

And the single, most influential issue that guided my vote was our current Health Insurance Disaster.

While there were many times this election season that I was disappointed and even disgusted with things I heard from Trump, I believe that he will work with the Republican party to strengthen and support America's working class. I hope and pray that his leadership will be able to make very positive improvements to our nation's healthcare.

As we all know, it was a huge agenda for Obama's administration, but from my perspective (and that of many others that I talk to) the Affordable Care Act has turned into a Disaster!

And my guess is that the timing of our health insurance renewal notices played a big part in getting many of those Red voters out on election day.

The very week before the election, we received a brochure in the mail encouraging us to "Get on the FAST TRACK with Confidence." That felt like a slap in the face.

The brochure cover that inside told me that my monthly premium was going up over $400!
I felt anything but the elation this guy portrays...

It was from Highmark BlueCross BlueShield. In the most delicate way possible, it explained the "3 EASY STEPS" for continuing our health coverage for next year. Apparently, my current plan has been replaced.

A table compared my plan from 2016 to the one they are proposing for 2017. Allow me to share some highlights:

• 2016
• $3,000 Family Deductible
• $7,000 Out-of-Pocket Maximum
• 0% co-insurance and hospital services after deductible
• $1,512.50 Monthly Premium
• 2017
• $2,000 Family Deductible
• $12,000 Out-of-Pocket Maximum
• 20% co-insurance and hospital services after deductible
• $1,937.05 Monthly Premium 

Good News: Our deductible would go down $1,000/year.

Bad News: My monthly premium would increase over $400!!!! Everything else is worse coverage. Plus, co-pays are higher.

GRRRRRRRRRRRRRRRRR!!! How is this even legal? Last year, my premium went up over $300 a month! In just the last two years as Obamacare has taken root, my insurance premiums have increased almost $800 a month MORE THAN what they were for the same type of coverage. That's simply ridiculous and cannot be labeled "Affordable Care".

I work very hard and provide a good living for my family. And as my blog talks about, we have significant medical needs every year due to my daughter's spina bifida and my husband's epilepsy. It burns me to my core to feel punished and backed into a corner with limited options.

So I sat in my bed late at night, after my three precious children had fallen asleep, and shared my heart and frustration with my phone. Then I shared the video on Facebook.

Soon I had a little army rallying around me. I knew that I was not alone in this mess. More than 120 friends shared my post and within days it had been viewed over 6,000 times! That's not exactly going viral, but that's much more response than I usually get.

Here's my video. This was off-the-cuff, so it's not polished or anything.



That was just a few days before the election. So again, I have hunch that millions of Americans finding out that they're going to struggle to afford basic health coverage played a big role in the election results.

And as I was filtering through the barrage of nauseating banter on all media about Clinton and Trump, a friend of mine shared openly about why she voted for Trump. And one of the comments summed it quite well I thought.

Reasons why Trump won

So for those who just cannot understand (cough, cough...the media) why so many "white women" voted for...gasp, Trump...here's one mom's reasoning:

1) he was the only pro-life candidate on the ballot, 

2) there are a lot of SCOTUS [Supreme Court] picks in play, and those last for a generation,

3) my healthcare premiums went up more than 20% this year for the third year in a row (and I didn't get to keep my doctor, as promised), and 

4) I wanted to send a strong anti-establishment message to the federal government and this might be my last chance to do so for a very long time.

There you have it. Why many of middle class America voted for Trump.

It's not that we love him, agree with all he says and all his policies. No. It's simply that given the two options, we believe he is the better choice for our future and our families. Clearly, there are about 60 million Americans who disagree.  

My few final thoughts 

In terms of our health care disaster, there are some good aspects of Obamacare, so I don't actually believe a full repeal is the answer. There is no easy answer, but something MUST CHANGE to stop premiums from going up 20-30% every year. We're about to send our country back into recession with this mess.

I am exploring other options for health insurance, but Delaware only has two private insurance companies. Aetna is our only other choice and a similar plan would have a premium over $1800 a month. Other options like Medi-share, don't appear to be a good solution due to our expected medical expenses and costly medical supplies that our daughter needs on a daily basis.

I want to stress that I am incredibly thankful for a great job that provides a wonderful living for my family. And I am thankful to have access to good health care. This is not to be taken lightly. Without insurance, we would have gone bankrupt. It is a privilege to live in a country that offers both quality care and insurance. But costs are getting way out of control.

And finally, Trump is just a man. I don't expect him or his team to solve all our nation's problems, but I do expect them to improve some major issues. And I do believe that he will work hard to do that. More than that, I hope and pray that in spite of his polarizing comments, Trump can prove himself a capable leader and that in time the divisiveness that is rampant among us will subside.  

IN HIS WORDS...You are Unique

Adrian shares some words from his heart today.

Daddy and his boy on Judah's first birthday, April 28.

IN HIS WORDS

Each and every one of us is unique. We may find others that we share many similarities with, but at our core we are our own unique person. And just as unique is the story that we have to tell. Most of us have heard the phrase "everyone has a story to tell," which refers to the fact that everybody has or is going through a struggle. But does that detract from the emotional effect that it has on us as individuals? I don't believe so. I believe that it makes it even more important because it gives us all something in common.

The more I talk to people, I find that most of us fall into one of two categories.

The first category is to want understanding. We want our situation, our struggle, and how it is affecting us to be understood. Especially by those around us that love and care about us. The truth is that because we are unique and our stories are unique that no one can truly understand what we are facing and how it is affecting us. Even those who are facing the same struggle cannot really understand. They can only relate to some aspects of the struggle we face. However, that does not mean that we keep it all to ourselves and don't talk about it.

The second category that the rest of us fall into is trying to ignore the struggle we face. If we don't acknowledge it, then it doesn't exist right? Sadly, neither category is the answer and provides no relief for the struggle we face and so often leads to depression and substance abuse. When I say substance abuse we automatically think drugs and alcohol, and yes those are still very prevalent today. But what about food, sugar, or what I consider to be the most widely abused substance today - Screen time. Maybe substance abuse isn't the correct term but you get my point. TVs, smart phones, iPads..... How many of us stick to the suggested 2 hours a day limit of screen time? Not an accusation, just a thought. Look at what you do with your life and then ask yourself why.

Personally, I am finding that the best way to face a struggle is to begin with acknowledging it. Accept that it is here, it is currently part of your life, and no amount of denial will make it go away. Neither will any amount of pity make you feel better.

Next, find those in your life who can and will walk with you as you journey through your struggle. Even though only you can fully understand what you are facing it doesn't mean that you should face it alone. In fact, you can't. I have been struggling with seizures now for more that six years. My exceptional wife has seen most of them and stood by me through the struggle of change and recovery for six years. She cannot fully understand the struggle I face but it is her unfailing love and support that makes me able to continue to struggle instead of give up and give in to a vegetative state. And then I think of the support that our families have provided. Consistently supporting our requests whether they understood them or not. So surround yourself with people who care and don't hesitate to ask for what you need.

Next, and it's something that it has taken until recently for me to realize, don't be so absorbed with your own struggle that you fail to recognize others. As I have stated before, my seizures have dramatically changed me. Other than a few scars, it isn't externally that obvious but internally where it actually matters, everything has changed. I have been so absorbed with the apparent monumental combined struggles that Adria and I are facing along with the moves, births, and job change that we faced that I forgot that there are other people with real issues in the world.

A while ago I was sharing with someone the most recent developments in our ongoing family drama and after I had walked away I realized that I had not bothered to ask them about their day, family, or anything. As I began to think over the last six years I realized that this had been a fairly consistent trend and it made me ashamed. So remember to take time for others as you face your own struggle.

Looking over the past seven years and the struggles that we have and are facing it makes me realize how much I truly care about others and their struggles regardless of how big or small they may seem. I believe that caring is the path toward healing. Even if that healing is simply finding peace for our situation. Healing is not always returning to how things were.

I have also learned the importance of being heard. I recently read that healing begins when a person feels heard. How often do we not speak because of what we are afraid we will get told in return? Can we listen to someone share their heart and mind without trying to "speak the truth in love" in return?

So take time to care, to listen, to laugh, to cry, to love, to pray. Turn off the TV, shut the lap top, put down the phone. Go for walks, go for coffee, go out with friends, and always and forever, go disc golfing.

Still hoping for answers...for an End

We are still hoping for answers. Still hoping for an end to Adrian's seizures.

It has been a while since we shared about seizures and epilepsy. We wish that were because nothing has happened, that things are "normal"...

The truth is, Adrian has had a couple more seizures since we shared about the one that happened at Panera Bread last June. Once at the airport while on his way to visit his sister in Texas last fall. Once just before bedtime at home early this year. That one and the post-seizure psychosis was very intense, but we had a neighbor and family come to help.

Because of this recent activity, our visit to Adrian's neurologist at Penn Medicine in Philadelphia this month resulted in some different conversations.

Adrian was already in the middle of a medication change. Partly because the Vimpat he's been taking is not proving to be effective anymore, and because our health insurance put Vimpat on the "non-formulary" drug list leading it to cost us about $800 for a 3 month supply instead of the $40/month we were paying. No thanks!

These are tough transitions because people can't just suddenly start and stop seizure meds. It's a gradual addition of a new drug while remaining on the other, then gradually reducing the original med. It can really mess with the body. Adrian's been adjusting pretty well, but some days are rough.

But the conversation we had with his neurologist's physician assistant did NOT fill us with hope that this new medication will be the "solution" to his seizures. She said that about 30% of the population of people with epilepsy are resistant to drugs completely stopping their seizures. If two or three different drugs have not been successful, it's not likely that any drug will work 100%.

Adrian is now trying his 5th medication in 6 years....

Her facts left a little sting as we continue to seek answers on this journey. But she is a knowledgeable and kind provider, so we trust her insight.

So then what? If Adrian is not likely to be seizure free on medication, what options exist in the medical world?

We are seeing one of the leading neurologists in the country, who spends much of his time in research at Penn Medicine. They have an epilepsy center that allows them to keep patients for several days or a week to closely monitor seizure activity to see what's happening in the brain during an episode.

They intentionally provoke a seizure to occur in this controlled environment through means such as flashing lights, sleep deprivation, medication reduction and more.

The P.A. recommended that if Adrian has a seizure while on this new medication, he should consider participating in this study.

On the one hand, it would be wonderful to have a more clear picture of what's happening in Adrian's brain when a seizure occurs and how that could help better treat the issue.

On the other hand, the idea of sitting in a hospital for a week with wires attached and video cameras watching your every move while KNOWING that a seizure is coming...is pretty horrifying to us.

At this point, we are gearing up for the possibility of doing this sometime in the next year. He's going to have current MRIs and EEGs done this summer, since it's been three years since his last ones. Then, we'll see what happens and what we decide.

For now, he's still increasing the new medication and getting blood work done to make sure it's at the proper dosage for his body.

In spite of this on-going issue, Adrian continues to lead our family with love and strength. He amazes me everyday with his work ethic - He doesn't 'help' with housework...he does about 90% of it! He cares for our year-old son with sweet tenderness and understands his needs better than even mommy. And he is the involved father that our daughters need.

It would be wonderful to get some better answers. But it will be most wonderful when he can live years without this cloud lingering so close by.

Adrian and I out for a date nigh last week. I can't tell you how much I appreciate this man and all he does for our family, especially while facing daily health-related challenges.

The Beauty of Life...IN HIS WORDS

Today, we have a special post as my husband shares for the first time in months. As always, he makes me ponder and get a little teary-eyed as I read his unique perspective. I hope you can appreciate what Adrian has to say, especially as today marks 3 weeks since his recent seizure.

The Beauty of Life...IN HIS WORDS

I recently read that one of the few certainties of life is that…………. none of us are going to survive it. Does that sound morbid? Possibly, but it is also very very true. Personally, I am finding that having this truth made clear in my life on a daily basis is having a positive and liberating effect. Life is full of beauty, of joy, of vigor, of the sense of the miraculous and well……..just life itself. 

But so often the beauty of life becomes overshadowed and blocked out by the things that don’t matter and we don’t take time enjoy it. We spend so much time drug up, drug down, drug out, or just plain drugged that we miss so much of the beauty in life that surrounds us. Realizing that your life can be taken in a moment is very inspiring to focus on the beauty in life, the precious moments in life.

The daily reality that we have had to learn to live with is that a seizure and everything that comes with it can strike at any time, anywhere, and with no warning. What has been harder to come to grips with is the reality that at any time a seizure can hit and I won’t wake up in the E.R. I can be cutting grass or folding laundry and the next thing I know I will be asking St. Peter why now? How does a person come to grips with this in their heart and mind? How can it make any sense?

It doesn’t make sense and it can’t. Every day I have the choice to live in fear and self-pity, or I can spend living in and looking for the beauty of life. I have the choice to be negative or positive, build or destroy, be selfish or self-less. There are aspects of my life that I cannot control but these things I can. These are the choices that we all have to make on a daily basis and I hope that you don’t have to share my path before you learn to stop and smell the roses.

Will a seizure take my life? It is possible although not probable. It could be tonight, tomorrow, next week, next year, or never. I guess the uncertain possibility adds to the spice of life. However, this same possibility applies to everyone. Our lives hang but by a thread yet death is not something to be feared. 

I do not fear death, I do fear a wasted life. 

That is how I have come to grips with my condition, it is how I make sense of what is happening. I live my life one breath at a time and I focus each breath towards living a life that is not wasted.

One of my favorite poems is called How Did You Die by Edmond Vance Cooke.  Although the title may sound a little morbid I find the poem to be oddly inspirational. You should be able to follow the link on the title of the poem, but here are a few of my favorite lines.

          

You are beaten to earth? Well, well, what's that? 

Come up with a smiling face.

It's nothing against you to fall down flat,

But to lie there -- that's disgrace.

Adrian cherishing time with our son today while we waited
for our daughter Adria's appointment at A.I.duPont Hospital for Children.

                        

What Seizures look like and How to Respond

This weekend as we celebrate our country's independence, we are thankful for our freedoms and those who help make them possible. But we also think of the millions of Americans, like Adrian, whose personal independence is hindered by a health issue that is hard to control.

Adrian is still in recovery mode from his recent seizure but has been able to stay fairly active. Each one is so taxing physically and emotionally for him. It's been a long time since we have had to deal with this, and it is very frustrating. But we are not alone. More than 2 million people in the U.S. alone live with epilepsy - a neurological condition that affects the nervous system resulting in multiple seizures. It's complicated living when you can lose consciousness without warning at any time.

Here are some facts from Epilepsy.com:

• Epilepsy is the fourth most common neurological disorder and affects people of all ages
• Epilepsy means the same thing as "seizure disorders" 
• 1 in 26 people in the United States will develop epilepsy at some point in their lifetime.
• 150,000: Number of new cases of epilepsy in the United States each year
• Epilepsy is a spectrum condition with a wide range of seizure types and control varying from person-to-person
• 65 MILLION: Number of people around the world who have epilepsy
• ONE-THIRD: Number of people with epilepsy who live with uncontrollable seizures because no available treatment works for them.
• 6 OUT OF 10: Number of people with epilepsy where the cause is unknown

Treating Epilepsy

It’s now been more than five years since Adrian had his first seizure. We know a little more about them now, such as they originate from the right frontal lobe of his brain, and his medications usually work, but…not always.

We have hoped and prayed and many times believed they were gone, yet we will never have 100% confidence that they won't return. 

We decided that our family and friends should be better prepared in the event that Adrian has another seizure or you happen to be around someone with epilepsy who has an incident.

Seizures present themselves in many different ways, and there are many different types. Sometimes the person just stares blankly for a minute or appears to pass out. The type of seizures Adrian has are more severe and include the convulsions that most people associate with seizures.

He has what are called TONIC-CLONIC SEIZURES, formerly known as “grand mal” seizures. They can be frightening to witness, but if you know what to expect, it may help keep you calm.

We put together this information explaining what can happen during a Tonic-Clonic seizure and how best to respond. Who knows, you may find yourself in a Starbucks or Panera Bread someday and be the one to help calm the situation when someone has a seizure...

What Tonic-Clonic Seizures can look like:

Based on the seizures I have seen, this is generally what happens:

• He turns his face to the left and typically falls to the left if standing, when the seizure begins.
• His eyes close as his body will stiffen, clench up and convulse for 1-3 minutes.
• There is often blood coming out of the mouth from clenching jaws that bite the tongue. Interestingly, Adrian's tongue doesn't bleed much anymore because there is a lot of scar tissue from previous seizures.
• Once convulsions stop, he may stop breathing for a minute and turn purple…yes, frightening!
• When breathing stops it is because his chest muscles have tightened during the “tonic” phase. So far, Adrian always begins to breathe again without CPR as this phase of the seizure ends.
• Seizures can cause loss of bladder or bowel control, but not often. 
• The "postictal state" is the brain's recovery period after a seizure that can last for minutes or days. For many, this is a time a confusion with headaches and exhaustion. 
• In Adrian's case, this is when it gets most difficult as he begins to yell, moan and wander around. He will resist anyone who tries to restrain him or hold him down and will show incredible strength. He has no awareness of who you are or that this is even happening.
• This postictal phase typically lasts more than 30 minutes for him, which can feel like forever.
• Most people with epilepsy do NOT have this extreme activity after the seizure, it is very uncommon.

How to Respond to a Tonic-Clonic Seizure:

Here are a few suggestions of things you can do to help if Adrian or someone else has a seizure when you are nearby.

• Most importantly – REMAIN CALM. This has happened before. 
• If you are close by when he begins to fall, try to catch him before he hits the ground or at least prevent him from hitting any sharp/hard objects.
• Look at a clock and note the time - try to time the active seizure but don't let that distract you.
• Remove any harmful or fragile objects from the vicinity around him and place a pillow or shirt under his head.
• CALL 911 –  Look for a Medical Alert card or I.D. bracelet 
• Take any children away from the room or area. Do not crowd around him.  
• Do NOT put anything in his mouth or try to give him water, food, etc.
• Turn his body to the side with his face pointing down to help him breathe better.
• Once the seizure is over, he may get up and walk around during the postictal phase. It's best NOT to restrain him before help has arrived. 
• Again, try to stay calm and speak to him reassuringly, but he will not remember any of this.  

This is a lot of information, but we hope you find it helpful. We are still learning so much about Epilepsy and how to live with it. The cruelness of this disorder lies in the total unpredictability of it. Yet, we have felt God's hand of protection each time a seizure occurred and pray that will continue. And we are thankful that even though these seizures have limited some of Adrian's freedom, he still gets up every time he falls down.

It happened again...a Seizure!

It happened again. A crazy seizure.

This is the post we had hoped to never write. Since our blog started two years ago, we’ve only shared stories about my husband’s past seizures…not current. We contemplated whether we should even share this one so publicly. Yet, there are things to be learned and thanks to be given from what we experienced this week.

THE SEIZURE

It was Tuesday around 7:30 p.m. when our family of 5 stopped into Panera Bread for a light dinner.  We had just arrived in the beautiful Shenandoah Valley of Virginia that afternoon for a 3-day vacation before Mommy returns to work in July after 10 weeks maternity leave.

Our KOA vacation cabin...it was really nice.

I stood at the counter with 8-week-old Judah in my arms and ordered Mac n Cheese meals for our 3 and 6 year old daughters. As I looked back up at the menu to decide on what I wanted, I saw the commotion out of the corner of my eye.

The next thing I knew, my husband was falling to the ground right there by the counter and convulsing.

No! The seizures had returned.

THE HELP

“My husband has seizures,” I said to the staring faces around me as I rushed to him. “But it’s been a long time since he’s had one!”

Half a dozen Panera workers looked at me and questioned:
“What can we do to help?”
“Should we call 911?”
“Can I hold your baby for you?”

I had to think fast. I had to stay calm.

“Yes, call 911. Here, hold my baby. Please take our daughters around the corner, so they can’t see their Daddy. There’s not much we can do for my husband. His seizures last about 5 minutes, but then he gets worse, so we should keep people away” I said something like this, not sure exactly.

Adrian’s body lay on the ground shaking and seizing while some blood trickled out his mouth from his jaws clenching on his tongue. Someone brought an apron to put under his head.

I heard them on the phone call to 911 saying, “I don’t know how old he is.”
“He’s 36,” I told them.

“How can we help?” Several kind, concerned faces looked at me and kept asking this.

“My daughters haven’t eaten. Can you get them some mac and cheese? Wait, where’s my wallet?” The lady at the counter handed it back to me as some guy stepped up to order, uncertain of the situation.

Suddenly, Adrian stopped seizing. His breathing stopped. His body lay completely still.

In a shaky voice, I told them this usually happens and he should come out of it. But as a long minute passed and his faced began to turn deep shades of purple, my leg started shaking in fear.

“It’s not usually this long,” I said as I placed my hand on his chest, “Oh Jesus, help him!”

A group of 4 people came up and said that they were CPR certified. Of course they were. Every time Adrian has a seizure in a public place, there’s miraculously someone there with medical training to help the situation. God be praised!

They checked for a pulse. Nothing. His lips turned white.

“Okay, let’s begin CPR!” a man said, while a woman knelt over Adrian.

Just as she was about to begin chest compressions, Adrian drew in a shuddered breath. Color returned to his face as he inhaled deep, labored breaths. Oh, thank God!

Sirens could be heard outside as the EMTs arrived.  Moments later, he was surrounded by a medical team.

They asked me questions. What’s his name? Has this happened before? How long has he been having seizures? Etc.

I answered as best I could, then I tried to warn them. The seizure is just the beginning. He typically goes into a state of postictal confusion for at least 30 minutes following the seizure. He’s not aware and has no idea what’s happening, but he yells and gets very active and violent.

And just as I was telling them, it began. First, his legs started kicking and his sneakers flew off. Then, the moaning and sitting up trying to push people off him.

“I don’t know what to say, except that this is going to get worse. He’s very strong.”

Another emergency crew arrived. Soon, there were about 8 men fighting to get Adrian strapped onto a transport bed. It was quite a scene by the time they rolled him out of Panera Bread and into the ambulance. They told me not to rush to the hospital.

THE HOSPITAL

I gathered up his shoes, my wallet, the diaper bag, and went over to find our little girls happily coloring pictures with three of the Panera ladies while another held our surprisingly content baby Judah. I was sooo thankful for the help of those women!

They handed me a bag with the mac and cheese, drinks and yogurt and asked if there was anything else they could do to help.

“We just arrived in town on vacation, and I don’t know anyone in the area. Could someone come with me to the hospital and help care for my girls?” I asked, feeling uncertain about what to do.

A sweet, young lady volunteered to come. I got directions, packed up the kids, and headed to the hospital just a few minutes away.

“Mommy, why Daddy fall down? Daddy get hurt, Mommy?” 3-year-old Johanna asked. She’s never seen Adrian have a seizure. Both the girls were worried but remained fairly calm.

While I checked in at the Emergency Department visitor desk, a woman came in and walked up to me.

“I was at the restaurant and just realized what was happening as you were leaving. We live close by. Is there anything I can do to help?” she asked. Her name was Mary, and she gave me her phone number. I thanked her and hugged her, but the girls were already situated with the young lady from Panera and I was eager to check on Adrian.

I heard him right away as I entered the ED with Judah in his stroller. The sound of Adrian’s yells filled the whole department.

They would not let us in his room yet. His dramatic postictal state was still very active and his bed was surrounded by the EMTs.

A doctor came out and asked me about what happened and his seizure history. He said Adrian’s behavior had been very “impressive” and they had given him several doses of medicine to try to calm him.

Eventually, the doctor had the EMTs clear out and let me and Judah come in the room. Adrian was soaked in sweat. His face was red. His shirt was stained and dirty. His ankles and wrists still strapped to the bed as he continued to moan.

Adrian exhausted around midnight Tuesday after the seizure.

I tried to talk to him, but he had no idea I was there. We turned off the lights and he calmed down and fell asleep while sitting upright.

It was more than 2 hours after the seizure started before he showed any signs of awareness and recognition.

During that time, I called our parents and repeatedly checked on the girls. I was worried about them, as I knew they were tired and I needed to let the stranger who had stayed with them go home. Her name was Shannon, and she was a college student getting ready to leave for a summer trip to Africa to teach English.

Meanwhile, Adrian’s sister Betsy realized that we were actually close to one of their cousins, who we haven’t seen in a few years. His cousin Samantha texted me and soon she was at the hospital to stay with the girls in the family room waiting area, so Shannon could leave.

Johanna really wanted to go back in the ED and see Daddy, but I didn’t want her to see him like this. She kept asking about him every time I checked on them.

THE AFTERMATH

Finally, around 1 a.m. Adrian was discharged after they had completed all the tests they wanted to run and we’d had a good discussion with the doctor. It was a long, tiring night for all of us. But I was so thankful for those who stepped in to help and for our children behaving well in the midst of chaos. Judah was my comfort, as he remained in my arms for hours that evening, regularly being adored by the nurses.

Baby Judah sleeping in his carseat/stroller with a hospital gown blanket that night.

Adrian was barely able to leave the ED under his own strength, but he did. When we stopped to get the girls out of the family waiting room, they were fast asleep snuggled close together on two benches. Samantha said they insisted on sleeping side by side. Little sweeties.

The girls fell asleep together in the family room ED waiting area.
This was taken around 1 a.m.!

We arrived back at our cabin in the woods around 2 a.m. (after a quick stop for groceries at Walmart!) Rest did not come easily, but we tried our best to enjoy the remainder of our “vacation” before returning home on Friday.

We are so disappointed that it happened again. The seizure episode was frightening and once again leaves us with questions. Some that cannot be answered.

I hate to see my husband fall down. It feels wrong and unfair. And we will continue to fight for an end to these seizures.

Yet, we get up again and will continue to live each day, trusting and believing for God’s hand of protection to surround us. And we are so very thankful for all the strangers and people who stepped in to help a family in need that night!!!

In spite of the crazy night, we still took time to enjoy mini-golf, the playground and pool.

Daddy and his little man chillin' in the cabin.

A Midnight Trip to the ER

"Sitting in the ER with my husband, Adria's asleep in her stroller. He's stabilizing so hoping to leave soon."

Yesterday a notification popped up on my Facebook account that this was my "status" four years ago just after midnight on April 19. I had almost forgotten about that trip to the ER...but not really, I just haven't thought about it in a while.

The ER visit was a result of another seizure that had shown up completely unexpected. Except this time, Adrian had two seizures...in the same day...that had never happened. And it was the first time that our little toddler Adria actually witnessed Daddy having a seizure :(

It had actually started as a very exciting day for us. I had a doctor appointment with my OB/GYN who had confirmed that I was indeed pregnant again and just over six weeks along. Even at such an early stage, I was able to see a tiny flutter of a heartbeat on a screen...that little heart continues to beat in our daughter Johanna. It was so reassuring for us to see this little life as just three months prior, I had miscarried at 10 weeks pregnant and never saw or heard a heartbeat.

But my joy soon changed to fear, as later that day I received a phone call at work from my very delirious and confused husband. I left my model home office right away to arrive at home and find Adrian walking around disoriented with a few blood traces on his face. I found more blood spots on the carpet and the small gash in his tongue...all evidence that he had endured another grand mal seizure! Two year old Adria was playing quietly with her toys in the other room and seemed oblivious to what happened. It had been about four months since his last seizure, so there was no indication why another had occurred.

Later that night, Adrian's shoulder was in incredible pain (which often occurs as a result of the convulsions) but he seemed stable. It was late, so I decided to quickly run out to the pharmacy to get him some pain meds. I left Adria at home watching a movie, since I wasn't going to be gone long. In hindsight, that wasn't my best idea, but I had no reason to think anything else would happen. Adrian's seizures had really only come months apart from each other thus far.

To my great dismay, I returned home to find my husband floundering around the kitchen with more blood streaks on his face and a distant look in his eyes...and our precious little girl stood in her walker at the edge of the kitchen crying and afraid. It was a terrible moment!

I quickly helped Adrian find a seat, then held little Adria close to comfort her. Of course, she and I cried together for a little while. Later, as I changed her diaper, Adria actually told me, "Daddy fell on the countertop. It was scary!"

Her comprehension and ability to share what happened amazed me, since she was just 2.5 years old. But it really worried me as well that she had to see it.

Since this was the first time Adrian had experienced back to back seizures and the pain he felt was so intense, I took him to the local ER in Indianapolis, Indiana (where we lived at the time). It was almost midnight when we arrived. They did a CT scan on him, which came back normal... And pumped him full of strong pain meds so he could rest.

Adria could not walk on her own at the time, so she just rested in the stroller until Daddy was discharged around 4 a.m. I was exhausted as I took my husband and daughter home in the wee morning hours...wondering what we should do.

The neurologist later suspected that Adrian had the seizures because he was on a generic brand seizure medication and made sure that he be put on Dilantin.

Thankfully, my parents were already planning to fly in from DE and visit us at our Indiana home, so they were able to help care for Adria the following week as I returned to work. We enjoyed their visit and went on several outings, including a visit to downtown and the Indy 500 Motor Speedway, but Adrian was definitely not himself and still recovering.

The drama of the seizures was lessened by our little Adria's progress using a walker and becoming more independent. She even got to do an Easter egg hunt on her own with Grandma being clever to strap the basket to her walker. And when the grandparents left, Adria asked to fly with them...she loved the airport.

Two year old Adria enjoying her first independent Easter egg hunt with her walker, just days after Daddy's seizure.

My parents and brother Aaron visiting us in Indianapolis that week.

Our little family moving on from the drama of a few days earlier with a visit to White River Gardens.

So I look at how different our lives are on April 19, 2015 compared to April 19, 2011. Instead of just finding out we're expecting another baby, we are now just two weeks from the expected arrival of Baby Boy Seely.  Adria's not learning to walk, she's running around doing her best to keep up with other kids on a soccer field as she tries out organized sports!  Adrian has remained mostly healthy for two years, still with lingering side effects from the seizures but nothing like what he used to have. And we're back to being a few minutes drive from our parents, instead of a 12 hour drive. It's life. Don't get too comfortable, cause you never know what might happen.

Adria (far right) poses with her soccer team on Sunday, April 19, 2015
as part of her first ever organized sports experience.

The Starbucks Seizure...IN HIS WORDS

As we enter a new year and give thanks for our blessings, especially over the past year, we think back to one of the wild days in our journey where we saw God's hand of protection.

It was three years ago, and our newborn baby girl was just one month old. Both of our parents had traveled out to visit us in Indianapolis that December to welcome little Johanna. They had gone home, the new year had come and I was spending maternity leave at home with our two girls. At the time, Adrian was working for an insurance company in a high rise 45 minutes away on the north side of the city. He loved this opportunity, as it was the only time in the past six years that he had returned to the workforce...leaving the life of Stay At Home Dad behind, but only briefly.

The seizures kept returning. They kept him from pursuing these types of things. And as usual, they came without warning. Surprising not only us, but total strangers as well. I'll let Adrian tell the story of the Starbucks Seizure.

IN HIS WORDS...

I believe in miracles, as I shared in the past (We Believe in Miracles). Even though we don’t have the option of a visible miracle, we do have the option in asking for and believing in daily miracles, which I do. That is how I start each day is by asking for another day seizure free and believing that it will be. But even when the miracle of being seizure free doesn’t happen, that is when the visible miracles kick in.

Three years ago in Indiana, January 5^th actually, on my way to work I had stopped at Starbucks to get a latte before I got on I-65 heading north. The line for the drive-through was horrendous so I decided to go in and order. While in line, a young lady my sister’s age in military uniform got in line behind me so I asked if I could pay for her drink hoping that somebody else would be buying my sister, who is also military, a coffee. I paid for the drinks and the next thing I know... I am in an ambulance surrounded by people asking the typical questions of who, what, where, when. 

It had happened again, right there in the middle of Starbucks. 

This was the first seizure I’d had in public without anyone I knew around me. I later found out that the girl whose coffee I paid for is a paramedic for the military, and she was able to take care of me and keep everybody calm until the ambulance got there. 

IF I hadn’t gone in I would have been flying down the interstate when that happened and likely wouldn’t be writing this right now. BUT….I did go in….I did buy her a coffee….she just happened to have medical training…….and I am not dead. I am a realist, but I don’t believe this was all just circumstance.

Here we are with our precious little Johanna, born just a month before this incident.

It's me again... To be honest, this one was hard on me today. As I allowed my mind to relive the events not only of that day but of the weeks preceeding and following it. To remember what it felt like to enjoy a happy morning together and kiss my husband goodbye, only to receive a call from a paramedic less than an hour later saying my husband was in the hospital. I recall the desperation and loneliness I felt when I quickly packed up a month old baby and her 3 year old sister to go see my husband in the Emergency Room...again. But I wasn't alone, we did have friends nearby who came to help, and I later found out the miracle behind this first and only seizure that Adrian had in public with noone he knew around.

Hours later when I returned to pick up his vehicle at Starbucks, I walked inside and they told me what happened that morning. Adrian did not know. They said my husband had paid for this military woman's coffee, then just minutes later as he fell to the ground convulsing with the onset of a seizure, she was the one with medical training who stepped in to help. She not only assisted Adrian, but she helped explain what was happening and calm the people in the store who had likely never seen a seizure before. She took charge of the situation and had the ambulance called immediately. Even when Adrian was alone, he was not really alone.

It's an incredible story, that I'm sure some folks in Indiana still retell. For us, it was another day when we fell down but got up again. By the grace of God.