Wednesday, September 25, 2013

this blog...

I started keeping this blog at the end of October 2011.  I was very desperate for information about Doose.  We already had two hospital stays and my heart knew that things we just getting started.  I found little about this syndrome and so I decided to journal about our own experiences in hopes to record it as well as to connect with others. 

I've loved this little portion of cyberspace.  I have met so many wonderful people from around the world!  I've been encouraged by friends and 'strangers' alike. 

{Thank you for reading and encouraging our family on this journey.}

We are thrilled with Ben's medical progress. 
So thrilled that, at times, it seems petty to even talk about his other struggles. 
How can we talk about challenges when we have our little boy back?  How can we say anything negative when so many others are still striving for freedom from seizures?  How can we be frustrated when our son can do so much more than ____? 

But I feel like we are still on this journey. 

The truth is that some days are still pretty challenging.  It was hard watching Ben seize without being able to help him.  It is hard now to see him struggle academically.  My husband and I are both elementary school teachers.  School is what we do.  School is what we are good at.  We love to wake up and get there.  But school is a challenge for Ben.  He knows he is loved.  He loves his teachers and his friends.  But he comes home frustrated.  (This is NOT a reflection on his teachers.  We are SOOO thankful for everyone who works with him.  We want him to be pushed to do all that he can and even more!  We know that he is coming home exhausted because he's giving it his all at school.  This is what we want, it's just still not easy to watch.)

{Bear with me as I finally get to the point of this really long post.}

I've been listening to a sermon series by Chuck Swindoll called Confessions of a Cynic.  He's referring to Ecclesiastes 3 and our interpretation of life and it's injustices. 

If I'm honest, I have felt that this journey has been unjust.  It's not fair.  It's not what I wanted for my child - to deal with epilepsy, countless seizures, medical procedures and now learning disabilities.  This is not what I planned for my family.  Now that things have settled down and we aren't living in pure survival mode, I have felt this attitude of injustice welling within me.  {ugly, but honest}

Here is some of what Chuck Swindoll has to say about injustice:
"Does he [the writer in Ecclesiastes] say, 'Try to understand your circumstances?  no.  Compare your lot with another's and see how much better yours is?  no.  Does he say fret and fume?  no.  Become bitter?  No.'  He says to reject self pity.  Reject resentment.  Reject retaliation.  Find ways to discover advantages to your disadvantages.  We can't change our lot, but we can change our reaction to our lot.  Who knows the impact it will have on others?"
He goes on to ask three questions:
  1. What is your unjust disadvantage?
  2. When do you plan to replace passive self pity with active courage?
  3. Have you ever considered the impact your advantage (that is the disadvantage you have turned around to view as an advantage) would have on the world around you?
It's time for me to step out of the self pity of injustice. 

I can't change this lot for Ben. 
I can't change the lot of adjusted dreams for myself. 
But I can change my reaction to it. 

How?  That's the part I'm still working on.  I'm going to start with just being honest with God and surrendering my plans and dreams in exchange for His.  This "injustice" has brought me to the end of myself.  I can't do this on my own.  I need His wisdom and ideas and patience and understanding.


So...this blog.

The focus may shift a bit from Ben's medical condition and more towards how we are getting him caught up academically.  (I have to find a balance because I so want to respect Ben's privacy.  I don't want to write anything that may hurt him or take away opportunities from him in the future.)

I still want to share the HOPE that Ben's story brings to others just starting on this Doose journey. 

Thank you again for sticking with us on this journey.  I know that we are going to be able to report great improvements in the area of academics and behavior just as we have with his seizures.  Our God is greater!

2 comments:

  1. Great post. I wanted to share with you a story I just posted on our www.figuring-it-out.com blog. It is about an amazing experience I just had with a former keto kid. It speaks to your post here I think. Take a look! Your blog has been an ongoing inspiration for us, and not only that, a roadmap for what we have seen with Gabriel. Our two little boys seem to be on exactly the same path. We have been so grateful for your willingness to share the journey and walk a few steps ahead of us. We never would have found Felbamate as a solution (knock on wood) without this blog. I can honestly say without it my little boy would almost certainly still be seizing. So thank you.

    www.figuring-it-out.com is the website.

    Chuck

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  2. I greatly appreciate you sharing your journey on this blog. Our son does not have Doose, but we have yet to get a more definitive diagnosis than "intractable epilepsy." It is your journey with God that has been such an inspiration to me. Thank you for being a witness to the faithfulness of our God! Your family is continually in my prayers. "Withhold not thou tender mercies from me, O LORD: let thy lovingkindness and thy truth continually preserve me."

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