He Is With You

YouTube - He Is With You
Check out the link above (be sure to pause the jukebox first at the top of our blog)
My sister posted this link above on her blog the other day for the song He is With You. I have never heard the song, but Eric and I watched it with tears and loved it! What a great reminder that no matter what we are going through, we are not alone. God is with us through every step of our journey in life. My favorite part is Joy comes in the morning because that is so true. When we have a bad day, God always comes through and shows us the joy in our life. We had a rough start to last week and another emotional day with Eric being very non responsive. We have tied it to the possible effects that Ativan had on his system so we have cut that out. The last part of this week has been really good. Eric started using his Dynavox to communicate with us and has been "talking" up a storm and I love it. We've had some visitors too who enjoyed talking with Eric and laughing as well at his humorous commments. It is good to have Eric back and making an effort (it takes more for him to do this than to sit by himself quietly) to spend time with family and friends. It's good to laugh again.
My brother, Kevin and his family are in Columbia right now with their newly adopted daughter Maria and we were able to "meet" her last night on Skype which was so cool! She is beautiful! Pray for them as they get to know each other and bond together.
My Sister is almost done with radiation but is having horrible burns and side effects on her neck so keep her in your prayers too.
Both of their blogs are on the side of our blog if you want to check up on them.
ALso pray for Eric's dad as he is going tomorrow to a pain clinic to help with his pain.
Praying that God will bless us with a good week. We will miss the Olympics being on as we have enjoyed watching them together as a family.
Blessings to all of you!
Lori

Communication, more than just talking ... an insight to ALS patients from a wife who cares

Someone asked me the other day about how to read Eric's responses to some particular visits and their questions were very valid. As you know, I can read Eric better than anyone. Lately, I tend to play offense and defense for Eric in these areas. He does not talk as much as it does take more effort physically. His smile or nod is often his response or it can be that he is processing his response. He takes longer to reply as well as even trying to articulate what he wants to say takes more time. I have had to learn this as I await his reply. I am usually in a hurry wanting a yes or no answer (this is mostly when I am helping him with a need). But when he has something to say, I stop what I am doing and look at his face as I wait for him to talk to me.

Here's the tough part, most people are social creatures and talking is such a huge part of how we communicate. When we don't get a response, we instantly start to process what is wrong, what are they thinking, are they upset with me? This makes most people uncomfortable so they either talk more or leave the situation. Many people can't understand Eric as well and this takes great effort or interpretation (usually by me). When there is a lot of noise or commotion going on around, this is even harder, of course. This is why we have tended to have less people over and done more one on one visits. Things like watching big sporting events are an exception because these can be events to enjoy together, but even that tends to be a bit much for Eric to to take in. Eric had a lot of fun having everyone over for Super bowl, but couldn't do that all the time like he used to. They say that when you loose one sense, your others are heightened, like when you can't see, you can hear sharper. Eric hasn't necessarily lost a specific sense as much as abilities, but his hearing is sharp as a tack. He hears the mail truck from a mile away and always amazes me on what he can hear that I don't. This can be good, but also bad as he can sit in a room with a lot of things going on like conversations, kids playing or screaming, phones ringing, washing machine going, dog barking and he is on complete overload. We tend to tune in to one thing and block out the others, but Eric is not able to do that. I try to be cautious with this when people are here to keep things more low key and quiet. Those of you who have known Eric, know that he used to be able to do everthing at once and the more people the better, the more going on the better and the louder the music, the better, etc. It's really hard to see Eric this way as it is so different than the way it used to be, but I understand it and want to make things easier for him. It is really part of the disease as the more people I have met or talked to have felt the same way and can relate. This is why I thought I should post this to help you understand the disease and how it affects people. I also want people who do visit to feel comfortable as they understand what Eric is going through better.
To understand what Eric is saying or feeling, you need to look right at him and focus on what he is saying, reading his lips and expressions and be patient for his response (we tend to want to finish other's sentences with what we think they will say and that can be helpful or frustrating). Sometimes he is fine and doesn't have anything to say and sometimes he doesn't say what he wants because there is no pause for his response. Over a year ago, we met a family in Monroe at an ALS skate benefit and the husband had ALS and his speech was affected. His wife and daughter were often finishing his sentences for him which he would nod approval of. When I was talking to him on my own, I felt this draw to look at his face and listen attentively to what he was saying and I was surprised how well I could understand him and respond to him in a kind way. I felt so strongly that he just wanted to be heard and that most people probably brushed him off quickly or looked to his spouse for translation. I was prepared back then for what may come with Eric and what he might feel like when he loses the ability to communicate.
The people who have been around the most are the ones he tends to share more with and they become more comfortable with the changes going on with Eric too.
Sometimes it's OK to come over and just be here with Eric, whether watching a movie, rubbing his aching elbows, back or feet, praying with him, reading a book to him or just giving him a hug or squeezing his hand. We don't always have to talk to show love which is strange for most people, because we are social by nature (me especially) I love to talk!
If you are reading this and feel like, I have never come over to visit, please don't feel like you need to now, know that your prayers, emails and cards are a great way to show your love and support. We are blessed and have wonderful friends and family surrounding us.
Lastly, with the way Eric's chair is driven now, he has a device around his neck that steers his chair. Some people are afraid to hug him as this is in the way. Eric still appreciates hugs as we all need touch. You can ask him if it's OK to hug him and he will let you know if it's safe to give him a squeeze. My mom hugged him once with his chair on and they almost both went for a ride :).
I hope this helps not just to understand what Eric is feeling, but also help you unserstand others with ALS or similar disabilities.
Love,
Lori

30 days to live message from Life Church

LifeChurch.tv - Message Archive - 30 Days to Live

We have been watching a lot of sermons on line from Life Churches main campus based out of Oklahoma and have watched some really powerful messages. Click on the link above from the Series 30 days to live that we watched this morning that had a man who had ALS speak who reminded me of Eric. The message was so powerful and the series is based on the Verse in Psalm 39:4-5
"Show me, O LORD, my life's end
and the number of my days;
let me know how fleeting is my life.

You have made my days a mere handbreadth;
the span of my years is as nothing before you.
Each man's life is but a breath.

The Pastor also shared advice he was given regarding making decisions. When deciding on what you do with your time, ask yourself would you do it if you only had 30 days to live? Today, I thought again about how we spend our time at home and thought, I want to do things that matter for eternity. We still have opportunities to do things that matter for the Kingdom especially regarding our kids and the people we are in contact with. We can share with so many others through our blog as well.
Take a half an hour and watch this message from the red link at the top of this post, it is powerful and it will give you a new perspective on your life and what is really important. Don't forget to pause the jukebox at the top of the blog first so you cn hear the message without music over top of it :)

If you want to watch other messages, go to www.lifechurch.tv and go to I want to watch messages and pick a message or series from their archives.

Be blessed,
Lori and Eric

A Marine has requested that we post soon

Our friend Michael has just come home from Marine boot camp and has been waiting patiently for an update. He was here tonight with his family and some other friends for Superbowl which was a nice change of pace for us.
We know it has been a while since our last post. We have had some milestones since then. Zach became a teenager and Eric turned the big 4-0! Thank you for all of the cards, e-mails and calls on Eric's birthday. It was so encouraging all of the love you shared. Since then, things have been relatively normal around here, actually quite boring since it is the dead of winter and Eric is getting cabin fever. It has been a while since he has left the house. When it is so cold, the risk of getting sick and being so cold while he is out offsets the pleasure of actually getting out. We have gotten somewhat into a routine, but you can only watch so many movies, listen to so many podcasts and watch so many games before they all become a blur.
Eric's health is better than last month except that he is just plain uncomfortable most of the time. This is a difficult adjustment to face as I can't help him with this when he can't find a way to get comfortable. It seems like a lost cause which is so frustrating for both of us. I hate seeing him in this state as I know it has to be so hard to handle day after day. We are working on trying to get his chair more comfortable and managing his pain (discomfort). Night time is the worst and I have had a hard time with the way I respond to Eric in the middle of the night. It's like I become someone else and I don't like it, but can't stop myself so please pray that God will give me and Eric supernatural rest. I know when we are weary, He will give us rest.
I have been getting out to the store, running errands etc. a little more since Eric is doing better when we have help here and that has been nice for me, but I wish Eric could get out too. Spring is coming, but not soon enough for us. If we could move somewhere warm, we would do it in a heartbeat!
The kids are doing really good. We are so blessed to have such great kids. We started date nights with mom and I really have enjoyed taking two hours every other week with each kid to spend time with them one on one.
Please pray for Eric's comfort, mood and strength to endure as this disease is taking a toll on his body. Eric and I can really feel your prayers being lifted to the Father on our behalf. I have a wonderful husband who is an amazing man of faith and that is how we get through every day. Still thanking God for every day together and looking for God in the moments even when it seems so dreary and dark.
Longing for the sun to shine again soon,
Lori and Eric

P.S. we thought the blog needed a makeover... what do ya think? It's still a work in progress.