Tuesday 26 March 2013

The Face Of Epilepsy

Today is National Epilepsy Day and I thought it would be a great idea to show you what it is.  Of course you know it's a neurological disorder, but did you know it has a face?

It's a toddler falling in love with nature. ~

It's a big sister~

An animal lover ~

And a teenager. ~

It rides crazy horses that bolt ~

and graduates with a degree in anthropology. ~

It's a young wife and mother. ~

It's a writer and activist and, right about this time ~

It's a first grand Mal seizure.  It comes without warning, in the middle of the night.  It is severe and she can't tell the emergency room doctor her name. She doesn't remember details of her life for awhile.  Her back muscles are torn and she fights nausea and vertigo.  The neurologist tells her it's one off and she is fine.

Over the next five years, she buys a farm, rescues abused and abandoned farm animals and starts a pilot programme to pair 'at risk' boys in foster care with farm animals under rehabilitation.  ~

She adopts four more kids.  She drives them to therapists and doctors and lessons.  She gives them the love and stability they have never known. ~

Then, another grand mal.  This one is worse than the last.  She can't tell the paramedics her name and isn't sure where she is.  For months she can't tolerate noise, bright light or commotion and there are six kids in the house.  She can't drive or be alone in the barn.  She has to find homes for the large animals that present a danger if she is unconscious.  She can't take a bath or boil a kettle if she is alone in the house.  We all learn to watch for her pupils dilating or a sudden flush in her cheeks.  Tests show she is having almost continuous small seizures. It is wearing her body out.  We aren't sure she will live. Months of tests and experiments with drugs go by before her she is functioning normally again.

Epilepsy research is grossly underfunded.  Perhaps that is because epilepsy doesn't have a face.

It is the face of my daughter, the one you know as Farm Girl. ~

Today ~


  1. My prayers go out to your beautiful Daughter. This is an amazing post, that brings to light a very serious issue. You've definitely given it a face.

  2. Hi Maureen - My husband has a foster brother with epilepsy so we are familiar with it. My goodness, it has not seemed to stop your daughter from moving forward and living life. Good for her. My heart goes out to her as she struggles with this. I know as a mom it must worry you so. I'll keep her in my thoughts and prayers. What a wonderful soul she has. Hugs

  3. oh, my friend -- prayers for the best treatment possible for your beautiful and talented daughter. she is amazing.

  4. What a beautiful woman inside and out! Doesn't seem fair, does it? You told her story in such a compelling way. I hope the meds help her and that research gets the funding it needs. It would be money well spent.

  5. And it's a beautiful face at that.


  6. Holy Cow... that was powerful. Your daughter is so pretty, and sounds like such an amazing woman. She has accomplished so much too! Wow... thank you for sharing that. It really puts a face on epilepsy in such a personal way...


  7. Oh,Maureen! My heart aches for this beautiful soul and it makes me wonder, once again, why good people have to suffer so much. You can tell she is as beautiful inside as out- it just shines out of her. I will be praying for all of, too...because I know, as a Mom, that you must stand by and feel helpless. As Moms we would take the pain on ourselves if we could. God bless you and keep you all-and give those precious children a Nana hug for me- xo Diana

  8. What a post Maureen. You have written them before with similar emotion and strength but this one must have been very hard. As a mother I know the pain of worrying about your children but I have never experienced this.

    She truly is an inspiration. I love to read about individuals that truly stepped outside of their own needs to provide for others as she has.

    Thank you drawing attention to this. It is really something that one would have thought, by now, would have had more research devoted to it.

  9. Thank you Maureen for sharing your story and your beautiful daughter's! I hope that research will help find a way to control this disease. Sending you and your daughter a big hug!


  10. My dear Maureen...mere words fail me. My heart is aching, literally, for your beautiful daughter and the many people who love her. We all wish we knew why...we all wish there was a cure. Sadly, wishing won't make it so. We must demand more research be dedicated to controlling and eventually eradicating this horrid, debilitating condition. Thank you for sharing; thank you for giving us the opportunity to come to some level of understanding of what the face epilepsy really does look like. ((HUGS))

  11. I don't really have sufficient words to tell you how close to my heart this's not the same disease at all, but when it comes to our kids, well, it is never enough, is it. Many blessings her way and your's too.

  12. How absolutely terrifying this diagnosis must have been for your family (and perhaps still is in a lot of ways). Though my heart feels raw at the devastation this disease has caused your daughter, I must say that I am just amazed and impressed and wistful when I see how much of a contribution she has made with her precious life. I'm feeling a little ashamed today reading her story. My prayers are with you both.

  13. Oh Maureen, this post brought tears to my eyes and gave me goose bumps all over. Not because I pity you or her, but because she is an amazing woman! I have a niece that was diagnosed years ago. She had a couple seizures right at first, but I think her medication has done the trick. Farm girl is so beautiful and brave. I am sure you are so proud to be her mother. I know how scary it is to have a daughter with an illness. My oldest was diagnosed with Type 1 Diabetes at the age of 11. She handles it really well and seldom has a problem. I pray for a cure for both of them. I also wanted to let you know that you are the winner of my Spring canvas. Please e-mail me your address and I will get it mailed by Friday.

  14. Such an amazing woman - filled with love and a passion to share that love. So like her mother. Sending loving thoughts and prayers for a cure your way.

  15. I read this earlier but couldn't one up with the right words, I still can't. I will say that it is a beautiful face with n amazing tale. I hope funning and research is greatly increased!

  16. When a disease hits so close to home, your passion for a cure comes through. Your daughter is blessed to have a mom like you to stand with her.
    Mary Alice

  17. I don't know quite know what to say either, but prayers for your daughter and all your family. Chronic illness has an effect on each member and can be so discouraging sometimes. Here's hoping for more good days than bad ones.

  18. Maureen, I have been sitting here speechless. I knew your daughter had epilepsy, but to be quite honest, I always thought epilepsy was a short lived seizure and then done. I had no idea of the lasting effects and the physical damage. I never even once thought about someone having a seizure in a dangerous situation like around large animals. I am so sorry for anyone who has this, but I am especially sorry that it is your wonderful daughter who has done so much for others. Praying for you all. THank you for enlightening me about this.

  19. Oh my gosh Maureen... your beautiful daughter is such an inspiration to us all with all the good she has done. Talk about sharing love to the fullest. She is an amazing woman, and I hope they find a cure or a treatment that works for her... to give her back some or all of what this disease has taken.

  20. What an inspiration your daughter is! How lucky she is to have your love and understanding. It's a horrible condition that has ruined so many lives. I'm glad your daughter is coping so well. You must be so proud of her!!

  21. Wow. What a story! I know you must be so proud of your daughter. She is quite an amazing lady with so much compassion in her heart! I will pray for her and her sweet family. I don't know much about epilepsy, but I do know a little about seizures. My youngest has cerebral palsy and she has had seizures, too. She had them more often when she was younger.

  22. This story deserves to go viral Maureen - what a powerful way to bring light to something very few of know anything about!
    And what a powerful daughter you raised - think this is the best post I've read in a long long time!
    Much love to you and yours this Easter,

  23. Dear Maureen ... I read this post yesterday and I could not stop crying ... so today ... I read it again and think I can make a comment. Such a powerful and loving story and you have written it so well with a loving heart. My prayers go out to you and Farm Girl. She is beautiful and showing so much love for so many kids and her love for animals is remarkable.
    Blessings, my friend.
    Happy Easter,
    Audrey Z. @ Timeless Treasures

  24. Maureen, I have to say the post made me cry. The story is so well written and Farm Girl is unique with a huge huge heart. We see things differently when something like this hits so close to home. Hope you have a great Easter.

  25. Wishing your daughter all the best in her battle with epilepsy. I too know the faces of Epilepsy, in my special needs high school students, my Registered Nurse sister- in-law, and both my husband's sisters and his nephew.

  26. Oh Maureen....even though I knew all this stuff, the way you presented it was bold and heartwrenching...I have tears. She must get that pioneer woman attitude from you! xo wendy