Friday, January 6, 2012

a great day!

Ben has had a great day today!

He only had about 20 - 25 myoclonic or drop seizures all day.  I'm looking at that sentence and it's a little shocking - that used to be considered a really bad day.  But it's a huge decrease and I'm optimistic that they will continue to decrease.

He played outside, played his drums, talked our ears off, and was Ben again.  (Can you hear my heart smiling?)  :)

Maybe we are on the upswing again. 
Maybe it's just a good day.
It's during this time that our hearts and minds often become confused.  We are usually still emotionally and physically drained from the 'valley experience'.  We want to rejoice and celebrate, but we are also cautious because inevitably we end up in the valley again.  But we need to celebrate the good days and embrace them!

I was listening to the radio this morning and they played a clip of Francis Chan talking.  He was talking about the Lord's Prayer.  Specifically the line that says, "Give us Lord our daily bread."  I'm going to have to paraphrase but he said if we really only received our "daily bread" we would probably be furious.  We want to know that we are set, that we are taken care of.  We want to know that we have enough for today and tomorrow and the next and so on. 

But God is telling us that if we have enough for today, then we have enough. 

We only need the energy and strength to make it through today.

I don't need to focus on what might happen next week.  I can't live in fear of when this cycle might start it's downward spiral.  I have what I need from Him for today.

I'm so thankful for a great day. 

He may not even have to wear his helmet tomorrow.  :)


  1. Yeah!!! I'm so very excited for Ben. We will continue to lift him up.

  2. Thankful for a better day! Praying always..

  3. Our little 9 month old is sick with RSV. I was holding her in my arms last night thinking, this is so hard - I am so tired. Then Ben came to mind. And just like that, our little one snuggled right up to my neck and together - I really believe she was peaceful just so we could spend the time together to pray - and together we spent the hour praying for you, your husband, and Ben. It had to be the most peaceful hour of coughing fit we experienced last night :) I pray you have a good day to reflect on today as well as yesterday. Ben - you are a loved little boy!


  4. rejoicing with you!!!! :) my heart leaped when i began reading your post. I was just thinking about what a sound must have been coming out of those drums awesome sound of praise! Really happy for you guys.

    His Grace is sufficient. We continue to stand with you...