Memorial Day, Picnics, and Family

Memorial day,a day set aside to honor those who gave their lives and served our country so we can enjoy the freedoms we have in this country. There is so much we take for granted. On this day many family and friends have back yard bar-b-ques and picnics. Sunday I spent time with my family to celebrate my sisters birthday and Monday we had a family picnic with my wife's family. These days, spending time with family and friends means so much more to me than ever before. The love and support they provide is something I cherish. We had a good time together watching all the little ones play, eating, and visiting until the thunderstorms rolled in. I enjoyed it even though I wasn't able to eat and speak. It is very hard to talk and most don't can no longer understand me. I have my eyegaze speaking device but I'm just not ready to give in to using it yet. It does have it's limitations which is another reason I'm not real excited about it. But in time I'll adapt to it just like I did with all the other devices I depend on.

Through it all, God is good!

Wow, May is almost gone and time just seems to slip by quite rapidly. As I reflect back to all that has happened since the beginning of the year, I'm reminded once again how important it is to make every moment count in everything we do. When I was at home while growing up, there was a plaque hanging on the wall that said,"Only one life will soon be past, only what's done for Christ will last." It never really struck me how true this is until I was diagnosed with ALS. Looking back, there's so much more I could have done for Christ, storing up treasures in heaven. But what's past, there's nothing about it we can change. What we do have is the present and each day we are given from here on out. Since ALS, I have learned more about things like trust, faith, doubt, humility, contentment, hope and so much more than ever before. I hope by writing this blog, I can somehow help someone how to live for God in the midst of what may seem like a hopeless situation. Job lost everything but he refused to blame God. In the end, God restored everything he lost and more. In the end, God will restore me with so much more than I could ever imagine. I'm counting on it!

3rd Annual 5K Run

For the third year now Carol Miller from our church put together a 5k run/walk to raise money for Emy and me to help us with expenses not covered by insurance. It was a cold damp morning on the day of the run but 77 runners and walkers showed up to participate. Once again I am amazed at the love and support from folks I don't really know, get up to run at 6:00 on a cold damp morning and run for me.
A special thanks to Carol for her caring spirit and desire to want to do this to help us. It is truly a blessing to have people around me and a church's support, that do what they can to make this journey a little easier. I am humbled and amazed how God provides our needs. Sometimes words just don't express how I really feel. It was a great morning and my nephew came in first place. Thanks to all who those who participated. God bless you all!

I got my speech device which helps me to communicate my needs. It is something to get used to and I'm still trying to get the hang of it. Thank God for technology! Otherwise, I feel fairly good and am enjoying the warmer weather.

Family Retreat 2010

Family Retreat

Every April we have a family retreat for whoever can make it. It is always nice to get together and spend some time together. The kids have fun playing together and us adults sit around eating and drinking. This year was kinda hard for me because I can no longer eat and drink. I love all the food and snacks that are always available. My inability to speak clearly, makes engaging in meaningful conversation very difficult. But I am blessed to have family surrounding me with understanding, love, prayers, and support. I appreciate family and friends so much more now than ever. Most of all, I know God loves me and he will be with me through every phase of this journey.

Spring 2010

Well, I think spring is finally here with temps in the seventies today. I love springtime. It the time of year when after winter, new life is popping up everywhere around us. This has been an exceptionaly hard one for me. Cold weather makes me more spastic which makes my abilty to move that much harder. My speech has really deteriorated to where no one can understand what I am trying to say. My hand function isn't very good either. I have trouble with gripping things and holding on to stuff. I wish life wouldn't seem so cruel at times but that's not the way it is. Seems unfair that some people seem to go through this life unscathed from suffering and trials but I know God has a plan and purpose for each and everyone of us. I want to be like clay in his hands so he can mold and shape me to what he wants me to be. I know that each day I'm given, brings me one day closer to him.
"He doesn't treat us as our sin derserve, nor pay us back in full for our wrongs." Psalms 103:10


I hope like the spring season, I can experience new life, even when the physical part of me is fading.

March 11

Well the last several weeks have challenging to say the least. All the dreary weather and no sunshine was really starting to wear me down. If that weren't enough, my ability to talk has really taken a turn for the worst. When you lose your ability to communicate it gets very frustrating. Oh the things we take for granted. This has probably been the hardest thing to deal with so far.
This week has been much better. I had a birthday and all the cards and facebook greetings really lifted my spirits. God even gave me sunshine on my birthday! My Mom came to see me and sang a few songs for me. I could feel her love for me. Thank you Mom.
Yesterday I had my regular clinic visit at Hershey and I had a pleasant surprise with my breathing function. Last visit it was 65%, this time it was at 83%. Other recommendations consisted making some modifications to my wheelchair to make it more comfortable.
I am still waiting for authorization from the insurance for my eyegaze speaking device.
I have much to be thankful for and I put my life in God's hands. Thanks everyone for your love, prayers and support.

Faith

Lately I've been thinking about faith and what does it mean. I know the Bible describes faith as the substance of things hoped for, the evidence of things not seen. It seems to me that trust is a part of what faith is all about. God gives us faith to receive salvation so we all have a measure of faith. Jesus said faith the size of a mustard seed can move mountains. To me that means I don't need alot of faith to accomplish great things. If you trust and believe that God can do what he says he can do, that is faith.
I have people tell me if I have enough faith and pray for healing, I will be healed. I do pray for healing and have faith that God can heal me. Remember the mustard sized faith and what it can do? So why hasn't healing come? I can't answer that but I do trust and believe God can provide healing. Did you ever stop and think that it takes just as much faith in God in time of suffering as it does when everything is going our way? Maybe even more so. Paul had a thorn in the flesh that he wanted removed but God chose not to relieve him of whatever it was. So he just endured it to the end.
While I believe God can and does heal, there are times he chooses not to. That does not determine whether I have faith in God or not. To me it means God is trying to accomplish something greater in my life.
Remember the disciples out in the middle of a lake and it began to storm? Even though Jesus was in the boat with them, they lacked the faith (trust) in him to keep them safe. They woke him from his sleep. He chastised them for their lack of faith (trust) to keep them safe even though he was right there with them. He didn't tell them to wait till they had more faith in him to calm the storm, but got up and calmed the storm. They knew what Jesus was capable of doing, they had witnessed it all before. Yet they doubted him when they where afraid. He will provide for us even when we seem to lack faith and have our doubts. Jesus is right there with us even when the storms of this life rage all around us. To me, that is what faith is all about.

The Real Me

This was written by a patient with ALS that I met online and thought I would share it with you all. ALS is not what defines me as who I am, but it is my soul.

Catherine has been living with ALS for 14 years. What an inspriration!

Trust and Doubt

What does our trust look like when we can't explain our trouble or sickness? How do we look beyond it all? Some of us try to show faith by saying we are believing God for something in our lives like a job, health, or whatever other need they may have. Some say trusting in him means accepting that his ways are not our ways. I've come to realize that what it means to trust God can be almost as hard as the situation itself. I've also come to realize that the Word of God gives us wisdom for those struggles.
I am learning not to be afraid to be honest with God. David expressed his despair and helplessness for things beyond his control. Job accused God of being unfair. When it seemed God was ignoring them, they expressed it. But they learned to trust God in the dark times of their doubts.
It helps me when I break this journey down into small steps. As a friend once told me, inch by inch life's a cinch, yard by yard life is hard. God promised I will never leave you or forsake you.
In desperate times we think we know what we need from God. But God knows what is best for us even in difficult circumstances.
It gets real easy to doubt yourself. Job got to where he doubted himself more than he doubted God. After being reminded of the eternal power of God , he fell to his knees. From a broken heart, Job said,"I know that you can do everything, and that no purpose of yours can be withheld from you . I have uttered what I did not understand, things to wonderful for me, which I did not know. I have heard of you by the hearing of the ear, but now my eye sees you".
Even though I have doubts at times, when I see God and who he is, trusting him is a little easier.

New Year

2010, I face this year feeling a bit apprehensive thinking about what I might face this year. What will the future hold for me? Jesus on the Sermon on the Mount told us not to worry. It's easy to say but much harder to practice. I don't really worry about the past because it is gone and I can't do anything about the past. A few regrets maybe, but I can't change the past, but I do worry about the future.

Jesus said don't worry about tomorrow, for tomorrow will take care of itself. Each day has enough trouble of it's own. With this disease there are so many questions about the future and what ifs.

When we lived in the woods, we had a bird feeder to feed the birds. I recall sitting there in the dining room watching the birds come and go. I often thought about what Jesus said about the birds, "look at the birds of the air, they don't sow or reap or stow away in barns, and yet your heavenly Father feeds them. Aren't we more valuable than they? Who can add a single hour to his life by worrying?" God knows each bird, cares for each bird, and knows when each bird dies. If God does that for the birds, won't he take care of us?

Jesus said to seek his kingdom and his righteousness, and he will take care of all the little details of life. So when I see a bird, I know that he takes care of that bird and he will take care of me.

Lord help me not to worry but trust you with my life, Amen

Christmas 2009

This Chistmas was a special time together as a family. My sons both got married this year to the most beautiful girls I could ask for as my daughters. We spent Christmas day enjoying each others company, eating good food, exchanging presents, and playing games. I am thankful for family and friends more than ever and the love and support they provide. They mean more to me than any material gift I could receive. I am truly blessed with family and friends that love and support us. Thank you for all your prayers and support.

Holiday Season

As 2009 comes to an end, and the Christmas season is upon us, I am reminded of all that I have to be thankful for. Physically this has been a year full of challenges. But in spite of everything that has happened, I still have so many things to be thankful for. I have family and friends who love me and a Savior who was willing to give his life for me. Let's not forget the gift God sent to save us from our sin when we share our gifts with each other.
I am looking forward to spending time with all our family and friends over this Christmas season. There is nothing like enjoying Christmas with food, fun, and fellowship. May you all have a blessed Christmas holiday and a great year ahead!

Hershey Visit 11/18/09

"Hershey day today!
I never look forward to Hershey day....after I get to Hershey and see the support we receive, than I know it is the best for me to go to understand our journey with ALS. The past 3 months our journey has been very hard....We had to get adjusted to so many changes and are still dealing with them. Gordie's breathing went from 93 to 58 in late August. He had to get a breathing machine, feeding tube surgery and other changes. In 3 months he went from eating his favorite Tuesday night tacos to having formula every meal. Gordie eats very little solids anymore. Our good news today was that breathing went up to 65...what a relief. When it gets under 50 than he will need to be on oxygen. His strength in legs and arms tested about the same that it was the last time, changes in his hands and swallowing. He is going to get a speaking device in the next 6 months.

Every time we go to Hershey they ask him about his quality of life, so they can see how his spirits are. The past 3 months have been very hard for Gordie, he said in a soft voice....some days he finds it hard to find a purpose and meaning for his life. After he was done talking we were all in tears...he is so amazing, he can take things and bless so many people. At the end of the visit, his comment was that I am on the other side of it now and doing better. Wow! how he deals with ALS is so amazing and he touches so many lives, when we go to Hershey he lifts everyone spirits that we are in touch with. I love and admire my husband!

A bright thing in October was Chad & Noelle's beautiful wedding, he had a great day. Thank you Clint & Tanya and Chad & Noelle for our precious family time together, this makes our day when you come home.

Thank you Christine (caregiver) for coming with us today....

I love and appreciate our friends & family
Emy"

I just want to add, this journey with ALS is not for the faint of heart. When your body slowly begins to rob you the ability to do less and less for yourself, it can make you wonder what is my meaning and purpose for existing. Sometimes I think It would be easier to just give up fighting, but then I am reminded that God is sovereign and even though I have this disease, he has a plan for what he wants to accomplish in my life. Yes, at times I struggle to find purpose and meaning for my life, but I am confident there is. He gives all of us purpose. It is when I live beyond myself, then that is where I find a purpose and meaning for my life. My life isn't always about me. It's more about what I can do for him, forgetting about myself and allowing him to be glorified through me.

Since ALS, I can say God has blessed me in so many ways. God has given me a wonderful family, supportive friends, a church family that loves and support us, great caregivers that help me every day, and so much more. Through it all, I can say God is good! This Thanksgiving season I have so much to be thankful for.
Thank you all for your prayers and support!

Wedding Day

Sunday was the big day for Chad and Noelle. They got married in the afternoon at the chapel at Willow Valley, and the reception was in the Palm Court. It was a beautiful day and lovely wedding. I am blessed with a wonderful family. It is a delight to see them start their lives together and my new daughters are a joy to have around. God has blessed me with a beautiful family that support Emy and me in our journey. I pray they will enjoy many happy years together. I posted a slide show with some pictures of the wedding. Enjoy!

Chad & Noelle's Wedding 10/25/2009

Wedding Bells

This weekend is going to be exciting because Chad and Noelle are getting married. I pray they will have a great life together and for God's blessing in their marriage.

Feeding Tube

October 8th I went to Hershey Medical Center to have my feeding tube put in. Because my decline in breathing function combined with alot of choking and coughing while eating, they recommended I have the feeding tube put in. It's just another thing to get used to and a reminder of what ALS does to your body. I try to dwell on the things I can still do rather than what I can't. Not easy but I try. With God's help I'll make it. Thanks for all the prayers and support on my behalf.

September 19 Gordie's Day

Every year since I was diagnosed with ALS, my wife's sister and husband have a fundraiser for us to help with all the expenses involved with ALS. The fundraiser includes a motorcycle run, car show, and chicken bar-b-que along with other food items that are donated. It was a picture perfect day.

I am truly grateful but I'm humbled by the generosity, kindness and love that I receive from everyone that come out and support us.

As much as I hate this disease, I can say God is good. He has brought people into my life that I would otherwise never had the pleasure of meeting. He has shown me his love and kindness through others, many that I've never known.
I know I am in God's hands and I will trust him with my life.

Thanks to all for your prayers, love, support in this journey.

Tough Times

If you read my previous blog you know the past several weeks have been rather hard to deal with. On top of receiving a not so positive report from Hershey I had to put down my sidekick Daisy. Daisy was my dog, a boxer and has been with me since 2000. She was a loyal companion that never let me out of her sight. When I had to be in the wheelchair fultime she got even more protective with me. She was by far the most intelligent dog I ever had. She possibly had a stroke, cancer or something neurological wrong with her. She could no longer walk without falling or holding herself up by leaning against the wall or furniture. The vet said we did the right thing by putting her down. I still think I hear her or I find myself looking to see where she is when I go to move my chair.

When I received my diagnosis of ALS, I knew it was going to be a tough thing to deal with. Getting the results I got from Hershey really came as no surprise to me because I knew the time would come sooner or later when these types of symptoms accur. But I guess I really wasn't thinking it would happen now since my progression was rather slow to this point. As with each loss I experience, there is a time of denial then eventually acceptance.

I still struggle to make sense of it all, but then I'm reminded that all things work together for the good. God promised never to leave or forsake us. To be honest, there are times when I feel God is nowhere to be found, but I know he is always near me somewhere. I reach out to him and once again I ask him to know that I am in his will and plan he has for my life. Even Jesus felt deserted when hanging on the cross, but he knew that was God's plan for his life so a wretch like me could be saved. When I realize how much he loves me in the sinful state that I'm in, I am forever grateful that he allowed God to use him in that capacity for my salvation. Even though it makes no sense to me why I have ALS, I know God has a plan and a purpose for my life. There are times I think about how Jesus asked God to take this cup from me but not my will but may your will be done. As hard as it is, I want God's purpose for my life. I know he will provide the strength and courage to continue on this journey.