A challenge of Faith

Work and the kids were handled, what about Steve? He had some pretty big challenges to face. In 2005 his best friend from childhood, Derek lost the battle with cancer. Then the news about me and the ALS ENOUGH, right? NO? Let's see what else he can take on. In December 2006 Steve's closest friend and brother went to sleep and never woke up. This was incredibly devastating to all of us. Walt was the fun uncle.  You could depend on him to make sure you never took yourself too seriously. A huge heart and adored Chris and Ashton. He was enormously proud of the kids.Walt and Steve were always there for eachother, through the good and the bad. Just as Steve assimilates one grief another hits. His mother had medical issues for years and Steve was the one to take care of her. Taking care of his mother was an added responsibility, especially when added to his already chaotic life. His mother passed in late 2008, leaving Steve to deal with her affairs

Walt and Chris

Steve and I became Christians a few years prior. It was a difficult road for Steve, to believe Jesus Christ was the Son of God and our salvation. His faith was young and fragile. So much death and broken dreams shattered what faith he did have. The time when he needed faith of some kind was when he turned away in anger.

It's said that God only gives what we can handle and the challenges break us down so through our weakness we can become closer to God. My faith tells me it's this way but it's very hard to explain to someone who is not inclined to lean on something that is  ethereal..

So what has kept Steve holding it together? Medication wasn't the answer. That just made him feel dull, like being bound in a blanket. He talked to a therapist a couple times and that was not a good combo. Steve didn't want to burden his friends with his troubles, he looks to them for normalcy.  He has his father's ear, +my friend who is a pastor talked  us through some rough patches,  and is comfortable talking with his boss when he needs to talk. These relationships and his friends on Facebook have kept him from imploding. A sincere thank you to everyone.

Walt Sr., Walt Jr., and Steve

He has made progress in the faith area. Steve no longer makes bible thumper jokes. I can    point out blessings we have received and miracles we have witnessed and he doesn't tune me out.  He understands that the ALS has strengthened my faith and I rely on my beliefs to get through the day. Faith is a private issue and I don't believe in forcing it on people. On the other hand, I believe that God loves everyone and He has a purpose for us all.  This, and the knowledge that there is a place in heaven waiting for me, gives me extreme peace. I want that for everyone, especially my family. So I pray for Steve to let go of his anger and accept God's plan. If he leans on God and lets Him carry the burden maybe Steve will experience the joy I do of just being alive and at peace.


Steve still has his dark moments but he is a loving father, husband caregiver.

I am blessed to have him.

Walt Jr. as a young Marine

Walt Jr. loving life

Adapt , Embrace and make life an Adventure, Part 2

Reality was settling in at home. Steve and I were still debating how to approach the children. Do we tell them that there is no cure? That my body will slowly deteriorate? That I may not see them graduate? Fall in love? Get married? Have children? Do we use the word "die"? Steve and I were just realizing our own future changing. We weren't going to grow old together, take our kids to college, plan weddings, play with our grandchildren  - together.  Steve was going to be the crotchety old fart spending hours fishing and jeeping. I was going to be the busy volunteer and we would travel. Italy, Africa and Alaska (that was my vision). Those thoughts had to be pushed aside for now, we had to be strong and positive for Ashton and Chris.

I have always believed that there is a reason for everything. There is a positive side to every situation, the glass is half full and a smile will give you strength and comfort to those around you. My prayer was that I had successfully taught the kids the same, they were going to need this wisdom.

Chris was 11 and busy with establishing himself in school,    paint ball, archery and his social network. There is so much uncertainty of self at that age.  We decided to keep details light with Chris. We told him that I would not get better and different parts of my body would get weak. 
He was worried if I was in pain. Once he was assured there was no pain he relaxed. His way of adapting was to be my helper, if I needed anything he would help me get it. The universe still revolved around him at this age so it didn't seem to bother him much at the time. He took it in stride. Chris didn't get embarrassed when I would go to functions at his school with a cane or in a wheelchair which made me very proud.

Ashton was 16, had her driver's license and was experiencing a new kind of freedom. We were more straightforward with her. She kept her emotions  mellow around me.She felt comfortable asking questions  and had plenty of them. We would spend the weekends watching back seasons of Desperate Housewives, snuggling and talking. She did ask dad the more direct questions, Am I going to die? Was it hereditary? Steve was very candid with her. Ashton processed one way with her friends and another way with us. A good group of friends is so important during the difficult times, especially at 16. We are grateful for the support she had. There was   a little bit of a wild streak for a few months, grades went down, her head was not in the game on the soccer field, some partying. Was that the age or the ALS? I lean towards the age answer I remember 16 and many of you remember me at 16. When she got past that she put on a smile which helped her and those around her. She took an interest in the disease, did research, wrote papers for school   and  talked to others about it . Ashton embraced the situation.

This is enough right now. I don't think I have mentioned yet that I type with my eyes. That will be explained in a technology post.
The emotional subjects make it hard to type.
Cannot type when my eyes have tears. :)

A Thankful Moment

It's a cool 68 and blustery day, this Saturday. Some sun, a true fall day. Kind of a nice change to see a season on the central coast. This is the kind of day I like to stay cozy in my bed.

Steve offers to put me in my chair, bundle up and sit outside and watch him wash the cars. Contrary to what I prefer I jump at this offer! This is a true act of LOVE in my book. It's a tricky task to get me from bed to wheelchair, with two vents, etc. It's not something he does often because the weekend is time for him to rest and relax. Every time we do it, it's a refresher course. One of my nightime caregivers, Annie, stayed late to help and learn.

Steve did splendidly and now refers to himself as the "chair god", King for a day.

I must say, it was cold out, but we cruised around our neighborhood a few times and enjoyed the sunshine, Santa Ynez mountains and the blue skies dotted with fluffy white clouds.

In that short 3 hours there is so much to be thankful for. Great weather at the right time, Annie here to help me get ready, a patient husband that wanted to spend time with me, to be able to drink in the beauty of our surroundings. I feel very fortunate that I have the equipment and support to enjoy life, this is what it is all about .

If you are the host/cook this Thanksgiving, remember to slow down a little and enjoy your surroundings and family /friends.We are truly blessed.

All is well

Hello friends and family,
Sorry I haven't posted in a few weeks. I slept most of that time getting rid of a cold and adjusting to the cold temperature.

I know that's not much of an excuse compared to many of you who live back East! But mid-sixties is a shock to those of us in California!

All is well and I am ready to get back on schedule. Thank you for your comments, keep them coming.

Heidi