Purple Day 2012

I haven't updated my blog in quite some time because well...there is not much to update.
We have good days with Ethan, (5-10) seizures. Then we will have horrible days, grand mals in the morning followed by lots of drops all day long. We have seen him fall down the stairs multiple times this month, crash into the pavement when he is playing outside, and hit furniture often. I would love to write that things are changing, but that is just not the case. If we can make it through a day with out any injuries that is a great day! We are thankful for the little things.

Lately the hardest thing that we are facing is not the seizures, believe it or not. :) The toughest part of the day is by far meal times. Ethan is refusing to eat. For all of you who have been with me when I am preparing his meals you know how time consuming it is. Then we have to sit with him and coax him to take a bite. We spend so many hours either in the kitchen, or at the table trying to get him to eat. Most parents know how hard it is to get a 3 year old to eat something that they don't like. More than likely it is just not going to happen! Well with Ethan the food is his medication, and he has to eat every bit in order for this diet to work. It is incredibly draining, but we so want him to stop seizing. Please be praying with us. We need him to eat.

He does have his happy moments through out the day. Here is a smiling moment:

Today was national epilepsy awareness day. So in honor of spreading the word about epilepsy we wore purple. (Purple is the color of Epilepsy.) Ethan put on his purple button, as he has a favorite shirt that he likes to wear. (Just about everyday.) :) He has so much in his life that he can not control, so to have control over his shirt choice is very important.

Through the tough days of this last month we know that God has been faithful. One of the hardest things for me is to continue doing the hard things everyday and not see any dramatic change in his seizures. God is asking me to trust, but I want to see results. Slowly I am learning that everyday I need Him to be my strength. I can't make it through the day with out him. We can not see the next bend in the road, but we know that He walks one step in front of us. We can feel the prayers of our friends and we are so thankful for each day that we get to spend with this precious little guy.

Waiting

Just about everyday we get asked this question:

What are you going to do?


I would love to respond with a detailed plan. If I had my way each bullet point would have a time and a date next it. Every step would be laid out so that I could know ahead of time what to expect.

But God does not work that way. Much to my dismay he wants me to trust him. I am a very slow learner.

You see when Ethan first started having seizures we were itinerating missionaries. Which in english means that we were traveling around the country raising funds to get to the mission field. For us that was Indonesia. We are Assembly of God Missionaries so we have to have all of our funds raised before we can board a plane and leave for our destination. It took a huge step of faith for us to leave our amazing church in Montana to do what we believed God had called us to. We were almost finished with our budget. We were all set to go!

Then in a matter of minutes our world was turned upside down. Our perfectly normal two year old had his first seizure and little did we know that this would be the first of thousands.

The next few months brought may trips from our home in Montana to the children's hospital in Denver Colorado. If we were not speaking at churches on the road, then we were on the road to Denver. His symptoms only got worse with each passing day.

"What are you doing Lord?" I would find myself saying. There was no answer.

After countless emergency room visits and trips back and forth to Denver, Ethan was diagnosed with Doose Syndrome. As I have told many of our friends this is an 'idiopathic epilepsy.' There is no known cause and there is no known cure. For me this was so hard to comprehend. In this day and age with all of the technology that we have we don't know what causes this?

Again my world was turned upside down. We were getting ready to leave for one of the most remote places in the world. We had said, "Yes Lord! We will go." What is happening? Is there no way to fix what was happening to Ethan? We continued to pray. We prayed for healing. We prayed for answers. We prayed that God would work it out. Still no answers.

Then the questions started from those around us.

What are you going to do?


Our only answer was to continue to follow what God had asked us to do. Last we checked he asked us to be faithful, to trust him, and to follow him. But that all looked so different now.

Now there is no time line. There is no departure date. There is no method to treat Ethan's seizures. We are living each and ever day not knowing what the next moment will hold. Ethan could fall down the stairs and have a tonic clonic seizure at any giving moment. (that happened this week.) Or he could be doing great and have only a few head drops during the day. (It is amazing how my definition of "great" has changed dramatically in the last year.) We only know what we are going to do right now in this moment. God has a plan for the rest it. Every day I am learning to trust him more and more.

We have been seeing doctors for about 11 months now, and we still have no definite answers.

So what are we going to do?


We are going to continue to trust him. We are going to continue to be faithful to the call that we know he has place on our lives. We are going to continue to admit that we don't have all of the answers, but God does.

"God has now revealed to us his mysterious plan regarding Christ, a plan to fulfill his own good pleasure. And this is the plan: At the right time he will bring everything together under the authority of Christ—everything in heaven and on earth. Furthermore, because we are united with Christ, we have received an inheritance from God, for he chose us in advance, and he makes everything work out according to his plan."

Ephesians 1:9-11