Monday, March 7, 2016

Epilepsy Blog Relay: Living with a child with epilepsy



This post is part of the Epilepsy Blog Relay™ which will run from March 1 through March 31. Follow along and add comments to posts that inspire you!

In 11 days, it will be a year since the words seizures and epilepsy weaved their way into my life.  In the beginning each time the word was mentioned and I looked at my one-month-old daughter, my heart sank, fresh tears filled my eyes, and panic set in.  The word itself could send me into a tizzy.  When the child life specialist came into the room at our local children's hospital, she asked me if I knew what the term "epilepsy" meant.  To be honest, I had heard the word throughout my life, but did not know much about it.  I definitely did not think about it, and I can assure you when I pictured my future, the words seizure, epilepsy, and infantile spasms were not part of it.  Like other times before and I am sure yet to come, the life I so carefully planned was altered and I along with our family embarked on our new normal.  A normal filled with epilepsy at its core.

When your child is diagnosed with epilepsy, so many questions fill your mind.  You immediately want to know what is causing the seizures, hoping the answer might bring you some relief.  You want to know if developmental milestones will be met and if so, will they be on time?  When you learn that your daughter has a genetic disorder as the cause of her seizures, that she will most likely never have seizure freedom, and that her development will be delayed, things can seem hopeless.  Everyday becomes a battle to hold onto hope that there will be a miracle, that there will be a cure, that your child will defeat the odds.  Hope becomes your lifeline, the word you turn to for comfort, the word that brings a smile to your face, the word that gives you something to cling to in times of defeat and despair.  

It has almost been a year since our first ER visit.  In that amount of time I have witnessed my baby girl seize between 1-10 times a day, sometimes those seizures involve 40 mini seizures in one episode.  Her episodes have been as short as 8 seconds and some upwards of 6 minutes.  Her body has stiffened, shaken, and contorted into positions that are challenging to describe.  Similar to any new experience, at first you are scared, nervous, and unsure, then as the days go by you realize "you've got this" and the fear is replaced with a sense of comfort because it is no longer foreign.  With experience comes understanding, with understanding comes knowledge, and with knowledge comes strength.  Things are easier to manage, easier to talk about, easier to explain.  I have gotten used to my daughter having seizures; it is part of our daily routine; similar to changing her diaper or giving her a bottle.  I cannot remember our life before we dealt with seizures and I try not to fantasize about a life without them.  

Living a life with epilepsy means taking daily medications.  It means living a life based on trial and error and uncertainty of whether the medications will work or not.  It means making diet adjustments and as a parent pushing your moral compass regarding potential therapeutic measures that are not federally approved.  One of the worst parts of having a child who experiences seizures is that I cannot relate to her experience.  I have no idea what a seizure feels like; she cannot tell me what she wants me to do for her right before, during, or afterward.  What is worse than watching her seize is wondering if I am comforting her the way she wants.  

When your child has epilepsy, you are always on the edge of your seat...waiting, unsure when the next seizure will occur.  You are always on high alert.  It is when you least expect it, when you finally start to relax that you can be sure one will strike.  Seizures are not events of convenience, they happen in the car, during sleep, while eating, or while lying around and playing.  We have our typical "seizure routine" that we follow when our daughter has a seizure, our children know it well.  It actually brings a smile to my face when our two year old daughter tells the baby "It's otay...You otay Dondee" (Translation: "It's okay, You are okay Sonzee").  It is one of those glorified parenting moments when you receive validation that you are doing something right.  Even despite the unfortunate circumstances that surround us, epilepsy has made a positive impact on all my children, my husband, and me.  

NEXT UP: 
Be sure to check out the next post tomorrow at http://livingwellwithepilepsy.com for more on Epilepsy Awareness. For the full schedule of bloggers visit livingwellwithepilepsy.com/epilepsy-blog-relay.  Be sure to check out the Epilepsy Blog Relay Thunderclap to raise epilepsy awareness. And don’t miss your chance to connect with bloggers on the #LivingWellChat on March 31 at 7PM ET.


Mommy bloggers, Join me @ Top Mommy Blogs If you like what you just read please click to send a quick vote for me on Top Mommy Blogs- The best mommy blog directory featuring top mom bloggers

7 comments:

  1. I am Shelley from Los Angeles,California, I want to testify on how i got cured from seizure, I have suffered from seizure since the year 2011 with so mush anxiety ,that i have to spend so mush money getting pain relief in the hospital, and I have visited several doctor ,but all to no avail, my world was gradually coming to an end because of the fainting and muscle spasms , until i saw a post in a health forum about a herbal Dr Williams who use herbal portion in curing people from different kind of diseases including seizure, at first i doubted if it we be able to cure my Generalized tonic-clonic seizure , but i decided to give it a try, when i contacted this herbal doctor via his email, he prepared a herbal portion and sent it to me via courier service, when i received this herbal medicine, he gave me step by step instructions on how to apply it, when i applied it as instructed, i was completely free from seizure just for 1 months of usage,i we recommend this to all my friend family in the world today who still suffering from seizure you can contact him through his email on drwilliams098675@gmail.com for help.

    ReplyDelete
  2. PLEASE READ!!!! PLEASE READ!!!! PLEASE READ!!!! PLEASE READ!!!!

    Hey Guys!!!Am so happy I got mine from Mike Fisher. My blank ATM card can withdraw $2,000 daily. I got it from Her last week and now I have $14,000 for free. The blank ATM withdraws money from any ATM machines and there is no name on it, it is not traceable and now i have money for business and enough money for me and my family to live on .I am really happy i met Mike Fisher because i met two people before her and they took my money not knowing that they were scams. But am happy now. Mike Fisher sent the card through DHL and i got it in two days. Get your own card from her now she is not like other scammer pretending to have the ATM card,She is giving it out for free to help people even if it is illegal but it helps a lot and no one ever gets caught. i'm grateful to Mike Fisher because she changed my story all of a sudden . The card works in all countries except, Mali and Nigeria. Mike Fisher email address is blankatm002@gmail.com

    ReplyDelete
  3. ALL THANKS TO DR WILLIAMS FOR THE GREAT DEED HE HAVE DON FOR MY FAMILY.This information will be useful for Epilepsy patients who is willing to use herbal medicine. My daughter had temporal lobe epilepsy, She had seizure and had a grand mal with rage episode. Our daughter's seizure is constant throughout the day. We had used several medicine which include: Epilim and Keppra, experience seizure control at the cost of serious debilitating side effects. It was during a casual conversation with a friend that I learned about herbal Dr. William,who uses herbal medicine in curing people from epilepsy,i was so glad to contact him on his email and make an order for his medication, it does not have any side effect. I am so glad to say that she has been seizure-free since July 2015 after taking William medicine. this a miracle cure?contact him for more detail (drwilliams098675@gmail.com) thanks once again admin for such an informative blog.

    ReplyDelete
  4. Dr Lewis Hill product is a real cure to Tinnitus,I am 38 years old, I suffered from permanent tinnitus for about 10 years, mostly in my right ear... which means I've got this constant in my ears, which has also made me somewhat deaf. It's like this Whee! noise in my head all the time. My T was more steady, this is due to prolonged exposure to the loud volume of concerts. Looking after your ears is unfortunately something you don't think about until there's a problem. I wish I'd thought about it earlier. There were days when I didn't know whether I would survive, I was so tormented by this symptoms. When I lay down to sleep it bothers me the most, As I lay my head on the pillow, it cancels out all the other noise but the Tinnitus. The Good News is that after using Dr Lewis Hill Herbal medicine, Tinnitus is gone, try it also it going to work for you. There are real cure and do not be discouraged. Hang in there... Better days will come (email him on: drlewishill247@gmail.com)

    ReplyDelete
  5. If you need to hack into any database, -YOU SUSPECT THAT YOUR PARTNER IS CHEATING, Erase criminal records hack , delete record, improve credit score, spy on whatsapp,-Facebook ,hack text, phone, emails, as long as it's hack contact Alex @Via Email :: ( alexhacker221@gmail.com ) Whats-App :: +2348186856665 he is great, you won't be disappointed, cheap and fast, he saved my relationship Tell him Andy

    ReplyDelete
  6. Are You In Need Of A Private Or Business Loans At 2% Rate For Various
    Purposes? If Yes; Contact us: collinsguzmanfundings@gmail.com/WhatsApp: +1 (786) 598-8751


    *Full Name:_________

    *Address:_________

    *Tell:_________

    *loan amount:_________

    *Loan duration:_________

    *Country:_________

    *Purpose of loan:_________

    *Monthly Income:__________

    *Occupation__________

    *Next of kin:_________

    *Email :_________

    Thanks and best regards
    Managements
    COLLINS GUZMAN FUNDING'S
    Website: https://collinsguzmanfundi.wixsite.com/website

    ReplyDelete
  7. WOW ALL THANKS TO DR WILLIAMS I HAVE NEVER BELIEVE IN HERBAL REMEDIES.
    my son have been a patient of epilepsy . I had tried a lot of anti viral med prescribed to me by doctors over how many years now but I could not see any improvements in my son symptoms. One day when going through the internet , i got to know about this great Herbal Dr who uses his herbal remedies in curing people from epilepsy,quickly i contacted him and he prepared a herbal medication for my son which i received and he used it as instructed by dr williams. After few weeks the improvement were very visible. the sleepiness and the abnormal behavior stooped ,on thing now he is so full of life. I would recommend this to all my friends,families,around the globe suffering from epilepsy.you can contact him through his email on drwilliams098675@gmail.com.for advice and for his product THANKS TO YOU ONCE AGAIN DR WILLIAMS

    ReplyDelete