Baptism...

Sunday was a wonderful day! My youngest daughter, Allison, was baptized. Her testimony is wonderful. 


http://www.youtube.com/watch?v=-dcbs1l_7E0&feature=email




Allison's favorite verse:


For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.


Jeremiah 29:11

Praise God!

I am going to pay a visit...

This Tuesday, I am going visiting… I am going to visit an older gentleman, whom I haven't met yet, who also has ALS. A friend from church asked if I would visit him; he is the father of one of her friends. She felt, perhaps, my visit would help. Learning from all of you what support can do to lift the spirits; I said yes – of course - this is my opportunity to help a fellow traveler, to pay it forward.

He doesn’t believe in God and I’ve been told, is struggling with the disease and what it holds for him. I hope to share Christ with him. I hope he can see how God has worked in my life to give me strength and peace in facing the challenges that lie ahead. Through Him I hope he can find a similar peace

Evangelism is new to me. I’ve never done this before. In fact, until recently, I thought I would never do. “Not for me”, was my gut reaction whenever the subject came up. I was never comfortable with it, never felt qualified. I’m still not qualified; I know more but not enough yet, but I want to do it, now. Hopefully I will have enough to answer all of his questions.

Please pray for us, that our hearts will be open, that God will guide what I say. 

Blessings....

Last Tuesday night was a special treat, Kathy and I had dinner with Doreen and Carlton. Kathy had known Doreen way, way, waaay back, when they were teenagers. It’s been 30+ years since they have last talked to each other. For me this was my first time to meet Carlton and Doreen. But, when we met it seemed like we were old, familiar friends. We sat back shared a nice dinner together and spent the night talking and enjoying each others company.

Doreen is one of my angels. She came out of nowhere after hearing of my diagnosis through a mutual friend. She regularly emailed us words of prayer and encouragement. Through our emails of support back and forth we have developed a very warm friendship.  The amazing part about Doreen is as she is supporting me up in prayer and e-correspondence, she is struggling with the life changing impact of a major illness herself. Doreen has been recently diagnosed with cerebral lupus, a very rare form of lupus. It is only the 3^rd case that her doctor has treated, leaving one to worry about his expertise on this matter. In addition to struggling with the lupus, Doreen also has to deal with the harsh effects of chemo and steroids used to keep the lupus in check. If that wasn’t enough the lupus has piled on all sorts of food intolerances. She now has to avoid chocolate, oats, dairy products and gluten – anything derived from wheat. I find it incredible, with all that she had on her plate, when she heard of my news, she reached out to me, a total stranger. But, to meet her, is to understand why.  She is that kind of person.

When you face such a mountain of uncertainty, your  world changes. You no longer share that fundamental cornerstone in life here which everyone else takes for granted – a future.  It forces you to walk a different path separate from the others. Although you are in the midst of people, the uncertainty leaves you feeling isolated, alone.

   

This is where those care packages of compassion - the cards, notes, invitations – can do so much. They are hugs of care that unravel the isolation, messages that others are with you on this path, if only for a moment, sharing this journey with you.  You don’t necessarily need to tell them they will be healed or that everything will be alright – it often isn’t and they know it. Just be sincere and honest, let them know you care. You do not even need to be an acquaintance. One of the nicest surprise moments were when complete strangers have written to let me know they care. Please remember this when you encounter the next traveler that shares a similar fate. Don’t underestimate the power you possess to help them. It is far greater than you imagine. Each moment you share with them is moment you walk with them on their path. This is something I want to share with you. An insight I’ve gain from my vantage on the other side. 

Be brave. Trust God.

Remember, He works in many ways and you may be His angel to give comfort to another on their journey.

Reality Check....

Thursday, we met with my palliative care physician, Dr C. This was our 3^rd appointment, meeting about every 4-5 weeks. Almost as a concession to the disease, in palliative care, the goal is no longer about a cure, but on helping families cope with the course of the disease and preparing for its eventual outcome. It is about mitigation rather than cure.

Dr C is a master of his craft. He has the perfect balance of expertise, compassion, humor and push. He is helping us prepare for what is ahead by tuning in and adjusting our psychological, social, financial, physical well being. He knows the path we face ahead, its turns, twists and pitfalls. His work with countless of families has familiarized him with every aspect of what lies ahead for us. To me he is more a guide on my journey than a physician.

Today, he knocked me down a few notches, brought me into a more realistic realm. As many of you know, mentally I’m doing very well, almost too good. I believe Dr C picked up on this and subtlety directed the course of our meeting to let me know – slow down, you have some tough times ahead. He never said anything directly and only touched on it lightly, but by his questions and his remarks, I understood, clearly, his concerns and where he was steering us. He is the veteran, this time he didn’t commend us on how well we were doing, instead he chose to caution us. Has he seen this response before?  Times may be good now but I could tell by his nuances that the storm we will face will be VERY big. Perhaps, I have been enjoying and relaxing too much. I always have wondered, quietly, how I will do mentally and spiritually once the tough times come and this meeting has brought it forward. Maybe, I underestimated the challenges ahead. I began to worry. Will I become depressed? Will I doubt God?  Perhaps, I am not as strong spiritually as I will need to be. I hope not. I am praying for strength and courage – for myself, Kathy and the girls.

My Easter Sharing ...

Better late than never. This is my first try with video and it took me hours to get this up on the internet... groan. Well, it's finally up. Hopefully it will work okay.

I wrote in a previous entry about sharing during Easter service. It's a from-the-heart explanation of what gives me courage to live life as I do in the face of a terminal diagnosis.

Let me know what you think...

Easter Sharing
Part1
http://www.youtube.com/watch?v=ZOqaHt8kmQc
Part2
http://www.youtube.com/watch?v=I2D7taD0LTY

An 18 year old sharing the same journey

http://rafu.com/news/2011/05/fly-me-to-japan/

Story of a brave 18 year old afflicted with ALS. Reading his story, my heart goes out to him. He is so young, just starting to experience life. Please pray for him and his family.

I’m tired today…

Don’t know why but I didn’t have any energy today. I started the day on the couch to watch a little TV.  I was a little tired so I figured I’d park myself here and get going once I felt more energetic  There is a lot of things around the house that needs attending to. That energy never materialized, just sat there watching television. By the afternoon, I kept dozing off so I decided to take a quick cat nap. Then, reenergize,  I would get stuff done. Well, that cat nap lasted till 6pm. Day gone, nothing done – what a waste. Don’t know if it was AL (the ALS) or my inherent laziness but I’m not happy.

Accomplishing things around the house is something that I’ve been having trouble with for the past 6 months. It takes quite an effort now to get started. Even when I do get going, it doesn’t last long. Sure, now it’s physically more difficult to get around but even 6 month ago when I felt relatively good, I was having trouble.  Inside, it’s almost as if a switch inside my brain has been switched off. The push inside me to get things is no longer there.

I suspect this is another facet of Al, a mental side. Everyone knows his physical side, how he steals your physical strength away, but living with him I now see he has a mental side also. It’s another challenge to overcome.  Always changing [my body], always adjusting [me] that’s the new norm.

My Chariot Awaits

I just received word that my scooter order just went in. It took a little while longer, but everything is complete and I should be receiving my chariot in a couple of weeks. This is great news since I suspect that I will soon need it to assist my getting around not long after arrives. When we started the process a couple of months ago, I felt it was premature. I was still walking fine and had no trouble getting around.  I felt guilty ordering something so expensive while my legs felt strong. It was on Dr C’s (my palliative physician) recommendations that I went ahead with it and now it appears to be a good call. The legs are getting a bit tired now and I’m going to need that zoom-mobile pretty soon to help me get around.

I’ve always said that there is always something to be thankful for and this is a great example of just that. Normally, a scooter isn’t in the cards for me. The normal process here is to go directly to a motorized wheelchair when walking becomes difficult. It’s all part of the government compensation guidelines and the insurance process.  For me, this sucks because the scooter would be so helpful in helping me retain a sense of normality for a little while longer.  It’s only because of the The Americans with Disability Act and  great people such as  Dr C, Tony, and a few others who pushed beyond the “No” to make it happen.

I am grateful, it is something I will always keep in mind. The power we all have to significantly impact the lives of those around us.  Dr C and Tony could have stopped. Their job didn’t require them to push as far as they did and I wouldn’t have faulted them – they were doing their job. But, because of them I will get to enjoy this life a little better for a little while long – Thanks, I owe you one.

Prayer

Yesterday we went to Wintersberg Presbyterian Church in Orange County. Most of the members at LAH were at a family retreat this past weekend so we decided to go to Wintersberg. We've been there a few times in the past.

Although, I have always prayed, it is a weak link in my Christian walk. ALS has revealed this as we moved forward with the diagnosis and since then I have been working on improving my prayer within my life.

The experience we had at Wintersberg was very nice. It was a perfect mesh with my current walk. The sermon was about prayer, what it is and how to do it. More importantly, after service they had a small prayer group to lay hands on and pray for anyone in need. Pastor Fred came up to me after service. He knew of my diagnosis.  As we talked he asked if I would like to have them pray for me. Normally, in the past I would have deferred. Being in the center of a prayer group would have been very uncomfortable for me. I am changing. I welcomed the invitation and was spiritually lifted during the prayer. My faith in prayer grows stronger each day. I believe if I am to be healed it will be through prayer. I do believe firmly that God can heal me. He can heal me - I just don't know if this is His will.