Hello! My name is Heidi Good Swiacki. I have been married to Steve for 25 years, which has been filled with laughter, trust and love. We have 2 great kids, Ashton 22 and Chris 16. I have ALS, aka Lou Gehrigs Disease. I was officially diagnosed March '05, I was just turning 45. This blog will be about a myriad of topics. I will share my ALS story which will hopefully encourage others. It will show that quality of life comes in many forms. I have to tell you up front that there will be some spiritual references. Don't be afraid or turned off by that. Since I have had ALS I have seen many miracles. Let's be realistic, who can be a happy, non-verbal,ventilated quadriplegic without Faith? I hope you will join me and make this an interesting, educational, inspirational forum. Humor and the ability to enjoy life is required! :)

Heidi passed away 3-25-13 :(

August 4, 2013

Hello, Steve here. To help with the healing process, I am going to continue on with Heidi's blog, primarily talking about our lives and how we as a family are learning to live on with Heidi's memories pushing us forward. Topics covered will be geared towards the affects ALS has on loved ones.

Monday, November 21, 2011

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. :)


  1. Thanks, Heidi, for being candid and letting us all know your feelings. It is so wonderful that you are doing this for others.
    God bless,
    Carrie L.

  2. A hard time typing with tears in your eyes? It's also hard reading that way.