The battle before us

In August of this year Lauren endured her first week long EMU (Epilepsy Monitoring Unit) stay. During her stay there she was hooked up to an EEG machine that would record non-stop any and all seizure activity. She was also being monitored via a video feed so her team of specialist can see how her body reacts to every seizure. Throughout her week there she had several blood test done as well as another MRI and a MEG scan. Every test was preformed for several reasons, 1, to figure out exactly where her seizures began in her brain and where they spread to, 2, to find any abnormalities in the development of her brain, and 3rd to see if she would be a candidate for surgery.

This past weekend Lauren, my mom and I traveled yet again to Houston to meet with her specialist and go over all her results from her EMU stay. I was aware of many things already but what would come next left me crying and shaking. 

All of her test have come back showing that her seizures are only coming from one location in her brain, her right temporal lobe. Knowing where they come from is not only helpful to her team but is also making very clear the daily life struggles she endures. Your right temporal lobe controls your short term memory as well as other things and from the struggles I see in learning and the results of her being below average in memory (yes she had a test for this as well) I'm now starting to understand why it takes her longer to learn things. Her EEG readings showed more than we were aware of. When Lauren first began having seizures she was having Tonic-Clonic seizures, she than began experiencing Simple Partial seizures. Her EEG results show she is having multiple Simple Partial seizures a day and more often then not they are going unnoticed by us. These type of seizures are very problematic because we can't tell how many she is having, how long they are lasting, or how often they are coming. The longer these type of seizures go uncontrolled the worse her memory will get. Her medicines are currently controlling her Simple Partial seizures from erupting into Tonic-Clonic seizures but they aren't controlling her Simple Partial seizures.

Not being able to see her Simple Partial seizures has left me with a rising hope that maybe one day she would grow out of her Epilepsy like many children do. With every passing month that went by where she didn't have a Tonic-Clonic my hope kept rising and so did the hope of those around us. That hope was lost when I was told that because of where her seizures are coming from the likelihood of her every growing out of Epilepsy is slim to none. Hearing this brought tears to my eyes and left me shaking.

From this point the findings continued to get harder to hear. When we began this journey of Epilepsy we never expected to have to start considering brain surgery, but that is exactly where we are. The blessing is because her seizures are only coming from one area of her brain and it happens to be the best part of the brain she is indeed a strong candidate for surgery, and it's the option her specialist is moving towards and wants us to openly consider. This news is a blessing for many parents whose children have uncontrolled seizures, however it was heart breaking, and gut wrenching news for Ed and I. We never once thought we would be left in the position of having to decide to allow a portion of our 5 year old brain to be removed. This is not an easy decision for us and it's not one we are rushing into. 

Lauren will under go more testing to gather as much information about her seizures as we can. All her tests will then be given to the surgical team for review. Her specialists said the sooner we have the surgery the better a chance we have at saving Lauren's memory, and the longer her Simple Partial seizures go uncontrolled the worse her memory will get and eventually her brain can shut down in that area.

I know if you aren't a caretaker of someone with Epilepsy or if you don't have Epilepsy yourself or have never witnessed someone having a seizure you may not understand why this news was so hard to hear, but I ask you to put yourself in my shoes for a moment and really think how you would feel, react to enduring all we have with your child and to now have to consider brain surgery.

We ask that you please pray for our family, for Lauren and her team of specialists as we move forward on this crazy journey.

Isaiah 41:10

So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.

Epilepsy Awareness 2012

Lauren began having seizures at the age of 3 and like many others who have Epilepsy her seizures began out of the blue. She was diagnosed with Epilepsy after she had her 6th seizure in less than a year. Life with Epilepsy has been anything but normal. Lauren has undergone lots of testing, different medications, rides in ambulances, and many trips to the ER. Dealing with Epilepsy is both trying, scary, confusing, and heart breaking for a mother to watch her 5 year old endure so much more than she deserves to. Epilepsy is hard on both the person with it and those who take care of them.

Before Lauren was diagnosed we knew nothing about Epilepsy but as I researched I was amazed about how many people deal with Epilepsy. Approximately 1 in 26 Americans Will Develop Epilepsy at Some Point in their Lifetime, 2+ million Americans live with Epilepsy, 1 in 10 people have had a seizure, 150,000 people are diagnosed with Epilepsy each year and 65 million people have Epilepsy world wide. After reading these numbers we knew we needed to get seizure smart not only for our daughter but because we never know when we'll be able to assist someone in their time of need. Seizures happen often without any warning, anytime and any where and you never know when you'll be able to assist. November is Epilepsy awareness month so please take a moment this month at learn more about seizure first aid.

Lauren is your average 5 year old, she is fun, loving, kind, adventurist, she loves to learn and explore the world around her. Although she has to be more cautious in doing everyday life stuff such as walking up and down stairs, bathing, playing on the playground structure she is living her life with Epilepsy as normal as she can.

Please spread the word on Epilepsy, get seizure smart, and pray for a cure for the millions living with Epilepsy.

A moment in my shoes

I have been battling myself about writing this post for some time now, and I've found myself writing it but deleting it several times. Today God showed me the courage I needed to take this step through another friends blog post. Her openness showed me how important it is to speak out so people understand, even if just for a moment what our lives are like.

My life has been anything but "normal" since Lauren had her first seizures. I can picture that very day like it is happening right now. In that moment I felt every emotion imaginable. I feared for my daughters life, I panicked because I didn't know what to do, I cried out for help and was so grateful to the people who stopped to assist us, I begged God not to take my little girl, I felt relieved when the ambulance showed up to help, I felt helpless as a mother, and I felt angry when I was told they didn't find a cause for her seizures that day. I've never felt so numb in my life than I did that moment.

Most people like to assume that our lives just move on as normal once she was put on a medicine. They think that Epilepsy is like a cold, not that serious, and from someone who was once oblivious about Epilepsy I can understand and relate to those assumptions. I wish with everything that I have that Epilepsy wasn't as serious as it is, and it breaks my heart how many people suffer with this condition, yet it's still not as know as breast cancer.

Every day I wake up and immediately check to see if my little girl made it through the night, praising Him for allowing her to be with us one more day. For her sake I try and allow her to be as much of a five year old as she can be, but as I watch her doing every day things such as walking up and down our stairs my heart races. You see seizures happen out of no where. Sometimes they come with warnings and we are able to assist her and lay her some where safe but that generally isn't the case, so doing every day normal things become a hazard for her. I live every moment of every day wondering if today will be a good day or seizure day, panicked by any thump I hear fearing she has fallen and is having a seizure, not being able to allow her to bathe alone, worried while watching movies or being near flashing lights.  I spend time concerned about her future, will she be able to drive, or live alone. Seizures aren't something you just forget about until they happen, they are apart of our every day life. 

In the beginning of all this I was open to others about all the emotions I was feeling, but I soon started getting the feeling that people were tired of me crying over something that doesn't necessarily happen every day. I began to lock up how I was feeling and what I was going through, feeling as if what I felt was wrong. 

Being a parent is hard work, and we often spend days worried about our children's safety, their daily life and their future, but adding to the mix taking care of a child with seizures makes parenting that much harder. I am grateful to God for trusting us to care for such a precious child. I know He has a plan for her life, and for her having to endure the burden of seizures, but I won't pretend that I haven't spent nights begging Him to heal her and remove this burden. This has been a rough journey so far especially with not having any answers. This journey has brought our family closer to God and to each other and has opened the door for me to meet some amazing families who deal with Epilepsy and know just what I'm feeling and enduring. For this I am grateful. 

If you you aren't familiar with Epilepsy please take the time to educate yourself on the proper ways to assist someone who is having a seizure as well as making yourself aware of the many different forms of seizures. Please visit the Epilepsy Foundation page at http://www.epilepsyfoundation.org/ and try and support your local foundation.

Please continue to pray for our sweet little girl and the millions of people affected by Epilepsy.

Summer Bucket List

Wow, what a roller coaster of a year we had. I'm so excited to say WE MADE it through our first year of homeschooling. The year didn't go at all as planned but it was a year of learning about each other and our learning differences. We hit many road blocks throughout the year and it even came close to me throwing in the towel and never homeschooling again. Thankfully I have a huge support team that has helped me see that the first year is always the hardest. My homeschooling friends have listened to all our struggles with personalities and curriculum and have helped me come up with a new game plan for this up coming school year. Homeschooling is what God has called me to do and I plan on doing it until he tells me other wise, even when we hit the bumps. I've learned so much about my kids and the relationship I want us as family to share. This year was so much more than just meeting our academic responsibilities, it has been about growing closer to God and each other. Although I have days where I want to run and hide, I really wouldn't want it any other way. With this I close out our first year of homeschooling, looking forward to a not so bummer summer. To make sure our summer is fun I've joined it with many other bloggers in creating a summer bucket list. You can check it out below.

Purple Day

March 26 of every year year is know as Epilepsy Purple day. This is something I have learned since Lauren was diagnosed with Epilepsy in August of 2011. Prior to Lauren's diagnoses I sadly must admit that I knew nothing of this day, nor did I really understand or know what Epilepsy was and I find that very common among most people. Since Lauren's diagnoses our family has gained so much knowledge about Epilepsy and how it effects so many more people than something like breast cancer, yet the foundation is under recognized and doesn't receive much funding or community fundraising beyond those who are or know someone with Epilepsy. Epilepsy sadly isn't the only foundation that is under recognized but it is a condition that effects more people. Every 4 minutes someone is diagnosed with Epilepsy and the life they once knew is forever changed, I know ours has.

It is becoming clearer and clear what my mission is with being blessed with a daughter who has Epilepsy and I'm seeking God through prayer and stillness for the steps he wants me to take. I know our God has big plans for all that we are enduring and I plan on staying faithful through the end, especially during the times it gets rough and praising him each step of the way.

I am asking each of you to please honor my sweet princess Lauren and the millions of others effected by Epilepsy by wearing Purple on March 26th!

Looking Up and Moving Forward

Wow what an awesome two weeks we've had. It's so amazing how things fall into order when you put your priorities in order and most importantly STICK to it. The kids and I have learned so much these past two weeks and are loving all our new curriculum. Lauren has been participating so much more and is catching on so fast.

I've also decided that I will be committing another year to homeschooling both the kids (we agreed to take it year by year). I've already went ahead and bought all the curriculum we need to continue through the summer (its far too hot to play out side in the summer here) and onto the next year. It's the curriculum we've already begun to use and we are loving all of it so far.

I know homeschooling is what is best for our family right now and I know its what God has called me to do, and although I still have my doubts and my fears, I'm waking each morning giving our day and school to the Lord and following his lead. I know I'm not equipped to teach my kids but God is and since he has called me to it he is equipping me through it.

Raising Money For Epilepsy

Please help support our efforts in raising money for the Epilepsy Foundation in Lauren's honor. We will be participating in an Epilepsy walk on March 24Th.



http://eftx.donordrive.com/participant/LaurensHope