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Thank you for checking out our website/blog. By journaling and updating this website we will attempt to keep friends and family up to date on what is going on inside our lives. Living with a terminal illness (ALS) and demonstrating how God is working in our lives to bring Him glory during this trial. We appreciate your gracious prayers and support during this season of our lives! We Love You All So Much!




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Thursday, March 19, 2009

What we have been up to lately






We have been busy as usual so we thought we would give a quick update (if that is possible)
Tonight we did something really fun. We had a local photographer, Kerry Sierveld come take our pictures. I know it was not my dad who is a wonderful photographer too! I came across her blog thru Zach's teacher and I just fell in love with her work. She has a unique gift and I just wanted her to do some shots of us. She had her hands full with us trying to get us to do what she was trying to capture but she did it beautifully and she is so in love with her work, she went home tonight and already posted a preview on her blog! http://imagesofessencephotography.blogspot.com
I sure hope this link works. If it doesn't, try to google images of essence photography and you will find her blog. WE LOVE THE PICTURES and will post some when we get them!! Wow, my kids look so old!! When did that happen??? Thank You, Kerry!!!!
Last week we went to Winter Jam at the VanAndel and saw Toby Mac and other great bands with a huge group of friends. We had so much fun and the place was packed for God praising and dancing. The pictures above are from that night.
Last weekend we went downtown to Inter City Church Planting Mission on Division with Steve and Cheryl Hytenin to help them with their street ministry they have been doing for a long time. It was a blessing to be there on a beautiful sunny day helping hand out soup, coffee and warm clothes and praying with people who have such a great need to see the love of Christ. Eric was born to do this and I am excited to do this with him. I really need prayer to build up my confidence to share freely with the homeless and down hearted people that come by. We plan to go there every Saturday that we can with Hytenin's and the other people that have been a part of this ministry. We encourage any of you who are interested in joining us to call us or Steve or Cheryl to help out! They really need some more people to help reach out and you will be so blessed for doing it!
I am still buried in tax returns and can't wait for April 15th!!
Zach has started Little League Majors in Grandville a few weeks ago and has a great team and coach this year! Sadly, his hamster Shadow died tonight. Zach discovered him before bed tonight and we both cried. He lived a good life so I think Zach is OK with his passing, just sad.
Maddie is busy playing with her new friends in the neighborhood since it is getting nice and is still all girl and all 6! She will be starting Tee ball soon.
Eric has been busy reading up on all of the latest info on the drug IPLEX. Eric is one of 6 original and now 20 people who have their Investigative New Drug (IND) for compassionate use approved finally since November 08 when he went to DC. They will finally be conducting a trial with this drug in patients with ALS. This is a huge release thru the FDA and has been posted on many ALS sights and many of you have been asking us about this. Please pray that this would continue to go along quickly and that the IND cost would go down from $2,000. We are praying we could split this with the others involved and not each charged this much just to get access to this drug. We also pray that this drug will help stop the progression of ALS in Eric and others and that the trial would start soon and prove effective and be released to all PALS. Eric has also been doing a new treatment at the Born Clinic that uses technology that NASA uses for astronauts coming back from space. It is pulsating electromagnetic wavelength frequency that helps the body heal. He has done two treatments and has felt relief of pain and has been able to sleep much better which has been great for both of us. We are excited about this! Pray that this continues to help Eric in the healing process. We have been praying almost the last two years that Dr.s will find a cure for this disease and there have been some new breakthroughs. Keep praying for this. We appreciate all of your prayers!!

Monday, March 9, 2009

So many things left unsaid






Hi Everyone,
It is late and I can't find sleep tonight. We have many nights like this and my mind keeps thinking of all of the things I wish we could have shared tonight at the church service at Wellspring. We haven't shared our testimony in a long time and about what it is like living with a terminal disease and we were somewhat unprepared tonight (well, at least I was) We were overwhelmed by seeing a sea of faces that came from near and far to support us tonight and the familiar faces of our church body listening to "our story". It means so much to us, the love and support we have from so many. We want to thank all of you for your love! I thought we were going to just answer Pastor Gary's questions tonight, but Eric (who loves to talk and share) took us way back tonight to his childhood and his need to be loved and feelings of rejection that followed him throughout his life. I know it brought back some feelings in his family of life growing up (many of his aunts and cousins who we rarely see came into town) All of us can relate to struggles in childhood and past experiences that left hurts or insecurity. I know people in my own family struggle with feelings of self worth and inadequacy. I know that these feelings have carried forward from generation to generation and have put us in bondage to that generational sin.
Eric brought you through our relationship when we met and got married and the struggles we had. We were on a path to destruction in our marriage. I am so grateful for the day that my husband gave his life to Christ and the changes that God made in his heart that was now filled in a way that no thing or person in this world could fill. It changed our life, our story, our kids lives and their children's lives. It broke the chains of bondage that Satan had on us.
"You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives." Genesis 50:20
We have come through so much since that day. We have had legal battles, miscarriages, loss of jobs, overwhelming debt, deaths in our families and loved ones, and this terminal diagnosis. I know many of you have similar stories. But our God is so much bigger than all of these things and He has carried us through all of these things in such powerful ways we should be shouting it from the rooftops!
My son, Zach said we should read the verse More than conquerors when we asked him if he had anything to say (he actually whispered that to me) This was the theme verse for our fundraiser last year and I had thought I had that on my sheet and knew it was from Romans 8, but was not prepared to share it. Pastor Gary knew that it needed to be shared because God put in on his heart while we were speaking and he shared it at the end and I want to share it again with you:
Romans 8:36-40
As it is written:
"For your sake we face death all day long; we are considered as sheep to be slaughtered." No, in all these things we are more than conquerors through him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.

Amen and Amen!!!!! Thank you Jesus for bridging that gap for us!
If you haven't read the book of Romans it is so powerful!
I am so proud of Eric and my children. I believe Zach wanted to share tonight that people who look at him at school and at play outside of our home, don't have any clue what he is going through. He has come home crying some days because people just don't understand and it just breaks my heart. His life is not your average 12 year old's life and he has matured more than he should have needed to going through this disease with us. I know that God sees his struggles and his pain and he LOVES Zach and He understands. Who endured more than God when He sent his own son to be crucified for our sins. Zach has a heart for God and is so much like Eric. He loves music (and sports) like his dad. Our kids are watching our every move and they want to be just like us. We need to lead by example (Christ as our role model) Do we mess up? Oh yes!!! We are so far from being perfect, but God loves us anyway!!!
Then my beautiful daughter Madison, who gets her hair and her mischievous grin from her dad ran up at the last minute to sit with us. She was signing numbers to grandma and waving periodically to people and pointing out her stamps on her hand and handing me a rubber duck while on stage with us. That girl has a free spirit and I have been told repeatedly throughout her 6 years of life by Eric's parents how much she is like her dad! It doesn't surprise me because I know I was never that naughty!! :) We love her dearly and I know that she is processing all of what we go through and doesn't quite know how to deal with her emotions at this age but when we are sad, she comes and places her hand on ours or just hugs us. I pray that she will come to know Christ at a young age so she can live the life God wants for her and not go through the things we learned the hard way!
We forgot to show the video of what it is like living with ALS that my dad made a year ago. If you haven't already seen it, I think it is a link on the right of our blog page. The night really didn't focus around living with ALS and I pray that God used us to share with people the powerful change He brings when we ask him into our hearts and accept him as our Saviour! If you haven't done this and feel God tugging on your heart, we would love to pray with you and share his free gift with you. We don't know when we will take our last breath. Life is so short here on this earth, but eternity is FOREVER with Christ! That just puts it into perspective. Life is not about us, we were created for HIS GLORY by HIM. People always tell me how strong I am, and sometimes I wonder if people think I just don't have feelings because I don't always cry, but Christ has given me such a peace about where Eric is going if he should pass away from ALS or anything else that I don't think about that. I treasure every moment that God gives us together. I am so happy and blessed. I focus on that so I don't cry every day and wallow in self pity. I have no idea what the future holds, but neither do you. I am a person who likes to be in control of things (just ask Eric) but I have NO control here. That's how God wants it, can you imagine what life would be like if we were in control?? CHAOS!!!
We were overwhelmed by the applause and some of you standing to your feet and I really hope that wasn't for us, but for God and what he is doing. We know you love us so much and so many of you are praying for us. We know the road may get harder and we know you will come along side us and most of all God will see us through!
I was reminded recently in studying Moses life that it is God's privilege to provide for us and it is our privilege to trust and obey.
Matthew 6:33 But seek first his kingdom and his righteousness, and all these things will be given to you as well. So true, God provides all our needs when we seek and trust Him.
My daily study bible which I have failed to pick up for a very long time brought me again to Numbers where Joshua and Caleb said, let's go to the promised land that God has given us while the 10 others said no, there are too many obstacles in our way.
I love quoting Charles Stanley so I will do it again "Joshua and Caleb lived to see the Promised Land, but only because they focused on the goal God had laid out for them and not on the obstacles standing in the way. The blessings God has in store for you are just as rich! Never allow shortsighted vision - especially one focused on obstacles - to block the far-reaching plan of the Lord." What a great reminder!
Philippians 3:14
I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus.
Our goal is not anything here on this earth, our goal is heaven and reaching as many people as we can to Jesus while we are here. I know God is not finished with us yet, hence the incorrect title of Eric's e-mail to some of you called "my last speech" His voice might go, but there are other ways to share the message and we pray that He will continue to use us for His glory.
Well, this was much longer than I had planned but there were many things that I didn't share that were consuming my thoughts. Hopefully now I will find rest.
God bless you all!!
Lori
Thanks for the photos so quickly, Joel

P.S. My dad and brother video taped the evening, if you would like a copy, let us know. It may take a while but we will have one. We video everything now for our kids and others who we can impact if Eric loses his voice.

Family is FOREVER

Family is FOREVER