Tuesday, June 28, 2011

Chats with my Daughter (Epilepsy)


Today my oldest daughter and I had a chat about her Epilepsy.  She is eight and has had this disorder since she was three months old.  She doesn't remember a time when this disorder was not part of our daily life.  It is all she's ever known.

Recently, she has been making mention of things she can't do having Epilepsy.  In several recent conversations with her brothers, I have heard her make mention that she is not able to hit her head.  Though this is true, her reference was that she was unable to have even the smallest tap to her skull or she'd immediate go into a seizure.  I immediately realized that my sweet eight year old was confused and needed to have a chat about "E".

I sat her down and explained to her that yes, we do have Epilepsy and reminded her that I have it, as well as her baby sister.  I explained to her that this disorder should not stop her from trying to do anything she really wants to.  That, within reason, she is able to fall, hit her head, and try until her hearts is content.

She has told me that she wants to learn to ride a horse.  While this does make me nervous I will not prevent her when the time comes.  I will provide her with a helmet along with a skilled rider to guide and teach her.  I want her to do these things that God calls her to enjoy. 

She has learned to swim recently and is learning to hold her breath.  I worry that something will happen, like any good mother, but I want her to swim so that she can go deep sea diving some day if her heart desires.  I want her to enjoy whatever experiences are offered into her life.  I cannot allow this disorder to hold her back. 

When I was a child, I was prevented from doing many things because of my own Epilepsy.  I was not allowed to try when I should have been.  I was not provided this chances out of my Mother's fear of losing me to my Epilepsy.  I do not want these same things for my daughters.  Instead, I want them to live this life to the fullest, taking only the necessary precautions and never missing out on the gifts that God provides them.  Had I listened to the naysayers about my own Epilepsy, my girls would not exist because I was not even supposed to chance childbirth with them.  Listening to my heart and my God provided me with three of the most beautiful blessings I could ask for. 

Our talk today reminded me how much this disorder does still affect my sweet girl.   It reminded me that she is growing up and needs guidance as to why we take precaution, as well as why I do allow her to live her life to the fullest, as normal as she can. 

Epilepsy is a part of our life, but it is and never will be all of our life.  I cannot live in fear that a seizure may come, but I can live aware of that and provide that awareness for my beautiful girls, while still allowing them the most normal of life. 

And that is the plan.  I'm sure there will be more talks about Epilepsy over our lifetime, just as there was for me with my Mom.  I'm thankful to have lived with this disorder all of my life so that I am able to provide the patience, guidance and love needed to all of my children.  It's not been an easy disorder to live with but we are "blessed" to know what it is and what to expect, as well as how to continue to live with it and prepare ahead for the next generation, which it may or may not be passed on to.  For now, I'm just thankful for talks with my sweet girl, to be able to help and encourage her in her life's goals, even while living with Epilepsy. <3

6 comments:

  1. Going to share this with one of my closest friends...whose little one was diagnosed at a year...and now is 7.
    Appreciated your perspective in this...she has an incredible way of looking at her daughter's struggles too...through the lens of Scripture and with God's hand carrying all.
    But...it's still hard.
    Thank you for sharing...
    Love,
    K

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  2. Hopped on over from Blogfrog just to be your newest follower! Hope you will follow me too! http;//ureadmorebooks.blogspot.com

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  3. I came here visiting from the TOS Crew. You know...to be a good Crewbie and follow your blog.

    But.


    Wow...this post totally hit me in the mommy spot! I may have to repost it on my "non homeschool mommy" blog. I have a little guy who was diagnosed with Infantile Spasms (a catastrophic epilepsy) at 7 months old...meds were unsuccessful...and at 2 1/2 he had a left hemispherectomy (they really CAN remove 1/2 a brain!). He's just four now...and what I like to term non-verbal-ish. But I struggle that inner battle constantly of worry for his safety...for his life expectancy...for his development. All of it.

    And I love listening to your heart...

    Thanks, hon.

    xoxoxo from another seizure mommy!

    ...danielle

    My Homeschool mommy blog is Raising Little Rhodies

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  4. Oh, sweet Mama...your words have reached into my heart and pulled out tears. What a blessing your daughter is to you...and you to her! God's design is so amazing. The words of the Music "My Little Girl" I pray God's peace and soveriegnty over you.

    I am stopping by from the Crew...and am blessed by your words and the way you are sharing your heart so lovingly!

    Rebecca
    www.momsmustardseeds.com

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  5. You have a beautiful family and they are so blessed to have such a devoted and insightful Mom. God bless and congratulations on your engagement!

    Nancy Sullivan (Jewels of Encouragement)

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  6. Thank you for sharing your heart and wisdom. My 4 year old as you know has just been diagnosed this week with "E" and I'm struggling to accept and understand it. I look forward to reading more of your post and learning from you.

    Love,
    Sarah H

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