Friday, February 15, 2013

Faith is a Journey

"Faith is the confidence that what we hope for will actually happen, it gives us assurance about things we cannot see." Hebrews 11:1

Some times I have moments where life seems hard, a little to hard. At those times it is easy to fall into a pattern of heart ache, and selfishness. Then all of sudden perspective hits. While sitting in hospital rooms I see other parents losing their children to cancer. I see single moms who are being told that they may only have a few hours left to hold their sweet babies. I am blessed to get to hold my child every day. He is still with us, and I am so very thankful. 

After nearly two years of daily seizures (some days 100+) our faith is what has kept us going. We know that God is with us. We have been asked many times over the last two years, "How do you have faith in a God that is not healing your son?" Our answer, "God is God and we are not." I have the faith to believe that Ethan will be seizure free some day. It may not be while he is still here on earth, but someday he will be. Right now God has asked us to be faithful and trust in his plan. That is incredibly hard for this control freak momma to do sometimes, but I know that God is the one in control not me. As I was reading through Hebrews 11 today I was reminded of all of the people throughout the Bible who had enough faith to do what God asked them to, even though they really never got to see the outcome. 

So as we take the next step in this faith journey we are asking for your prayers. We got word just last week this team of doctors in Seattle is out of ideas. "Ethan is puzzling us," they said. No medications have worked thus far, so trying new ones doesn't seem like a good option. Currently his blood levels are showing that the medication is hurting his liver, and his kidneys. After much prayer we have decided to wean the last medication that he is on. It is not an easy decision as nothing we do with this child seems to calm the seizures. However this particular medication and ketogenic diet seem to be interfering with each other. There have been quite a few parents that have reported their kids get better when the medication is removed. The hard part is removing it. It has to be done incredibly slow, and each reduction brings on more seizures. But the long time in-between reductions is very important. It gives his blood enough time to level out, and his brain can adjust to the change very slowly. Ethan is on such a high dose of medication that it could take over a year of weaning to get him all the way off. That is  going to be quite a journey. 

A promise from the Lord found in Isaiah 30:18-21:
"So the Lord must wait for you to come to him so he can show you his love and compassion. For the Lord is a faithful God. Blessed are those who wait for his help. O people of Zion, who live in Jerusalem, you will weep no more. He will be gracious if you ask for help. He will surely respond to the sound of your cries. Though the Lord gave you adversity for food and suffering for drink he will still be with you and teach you. You will see your teacher with your own eyes. Your own ears will hear him. Right behind you a voice will say, 'This is the way you should go.' "
We are asking for your prayers as we start this new leg of our faith journey. We are calling on the Lord for help and we believe that God is faithful to his promises. So no matter if we get to see the outcome or not we must be faithful to what he has asked us to do. 


  1. Hello, Ted here from

    I am so sorry to hear about your temporary step backward. I think you may be on the right track to go all-in keto. There certainly are anecdotes of some kids getting better off meds. And sometimes kids need to be all-keto for a while before they improve. Healing takes time.

    Hang in there. Keep going. One foot in front of the other. It will be OK. Ethan will be OK.

    1. Ted,

      Thanks for your encouragement. We believe the wean is what we are to do right now. Praying that we see a major decrease in seizures.