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.

Thursday, July 11, 2013

The first 8 hours

Hello everyone, Heidi's family has been trying to cope with her loss. The void we feel can at times be overwhelming. They say that the apple does not fall too far from the tree, my kids are such a strong reflection of Heidi as they seem to both have the ability to pick me up with strength and love when I am engulfed with grief and confusion as I try and figure out how to move forward without my bride. We three all seem to be able to sense when the other is in need of a hug and or  someone who just listens.

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. I will try and explain how we (Heidi and I) attempted to prepare for this day.

We lost Heidi almost 4 months ago,  never in our wildest dreams could we have imagined what was going to happen less than 24 hours after Heidi left us. Here is that story.

March 25th, I receive a phone call from Christopher, his 3 word statement will forever be with me. Crying, Chris said "Dad, Mama's dead", I could not believe what I had heard and asked him to repeat, he said in a louder tone "Dad, Mama's dead" What filled my mind next was a flood of emotions which caused me to collapse to the floor of our office in tears crying no, no, no. My pain was felt by everyone who was in ear-shot of our office. I ran out the office door not realizing where I was going, ending up at my truck without keys. As I ran back into the office, my boss caught me in a bear-hug telling me he could not let me leave, as he feared for my safety and those around me if I got into my truck and left. We sat out in front of our office for what seemed an eternity, I cried and Santos just held me

When we got back into the office, he told me that the owner of our company needed to see me, when I entered his office, he hugged me and cried as he prayed for Heidi's soul and my families well being. We talked about our previous 8 years,  I talked often with Pete as Heidi and I coped with ALS and its progression. I am blessed to work in a company that see's its workforce as a family.

My son called my around 2:30 in the afternoon, I arrived home around 4:00 to find Heidi's closest friends all huddled in our living room, they had all had a chance to go in say say good-bye to Heidi. When I got to our bedroom door, a police officer stopped me from entering, I looked around him and saw Heidi, it looked like she was  asleep, nothing out of the ordinary.

I tried to get around the young officer who stopped me again apologizing that he could not let me pass as the room was a crime scene. What he said did not really register (will touch on this later when I am able) all I heard was that I could not go in and hug my wife's body. I was not polite, I told him that if he did not let me in my room to hug my wife before she was cold to the touch there would be some real problems. He got on his walky talky and got approval for me to enter my own bedroom. As I got closer to Heidi, her smile which always radiated the room was not there,  I broke down crying asking her why, I hugged her, kissed her and huddled down with my head on her chest sobbing.

It was soon after this that the mortuary arrived and took Heidi's body.

I don't really remember when I called Ashton, but when I called, her reaction was like Chris's and mine, hysterically crying and asking what/how in disbelief. Ash was at Lake Havasu at the start of a week long spring break, her friends all took her in and held her. They offered to help pay for a flight home, but unfortunately no flights were available, so she rented a car the next day and drove home  .I am glad she was not at home for what happened next. I had also called my dad, who dropped everything to come up to do what he could to help. He arrived and stayed the night with us.

It is July 10 and I realize that although we had 8 years to plan and prepare, there is no plan in the world that really can prepare you for the feeling of desperation and loss you will experience. I can remember just as it was yesterday, Heidi calling me in tears as she was driving back from UCLA, Steve I have ALS, I am going to die what are we going to do? We both said after composing ourselves that we will beat this, Heidi said she will make a difference and together we embarked on this adventure with bravery, laughter and love. We often talked about the choices we made as husband and wife, choices in employment for one. When I lost my job, Heidi prayed (she prayed enough to make up for me) we had decided to stay in the Santa Ynez Valley, I would take a job making 50% less.

This was one of the best decisions we ever made and came back 10 fold in the support and love our family received from the Santa Ynez Valley.

Ashton and I talk about Heidi and what we remember..it is not the woman who could not move, talk or breath on her own. What we remember is the mother who had endless energy, the one always volunteering for school functions, coaching soccer, hugging and laughing. My memories are locked on our wedding day, 26. 5 years ago, I could see her blue eyes and radiant smile coming at me, I remember our vows, I can hear her voice.

The following are pictures of what we remember today

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