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.

Wednesday, September 25, 2013

Six Months

6 months ago today, at 2:30 in the afternoon, Christopher called me to tell me you had died. I thought I could write about how you and I had prepared for this day.
Advanced directives - very important aspect to make sure your end of life wishes are followed. You and I wrote ours together, we got it done but not without tears. Mortality is not an easy subject to speak-of, especially when your only 48 years old. You  had some pretty specific things, depending on how you were going to pass. We both thought at the time that you  would have  needed hospice care, as we thought at that time you  would die due to complications with your lungs, fluid, pneumonia or something along those lines. So we had planned on a slow demise, with us playing george winston, reading the bible and other stories with all of your close friends and family holding your hand throughout. You wanted to donate your organs to science, as you  thought the medical community could benefit and learn the affects of ALS  from a woman who beat the statistics (remember average life-span of a PALS is 3-5 years) You exceeded this by a ton. It was just like you to want to continue to give. 

It was unfortunate that the last people to see you alive disregarded your advanced directive.

Last Will and Testament - we did our will's together. This was easy, as we led pretty simple lives, nothing complicated. We spent much of our retirements when we were younger and able to enjoy life with our children as they grew. Hindsight, I am so glad we decided to live this way. 

This preparation was relatively easy, what you were unable to prepare us for was our living without you. It has been 6 months and it hurts. The emptiness is suffocating, I realized last week that I still maintain my routine of getting home from work, getting dinner and coming into our room to watch our favorite shows . This brings me peace.  I still see you and your smile and am actually on your side of the bed now. I feel your essence from time to time or at least I think I do.
 We all are having a very difficult day without you. We love you

Wednesday, September 18, 2013

Family and Your Terminal illness

Over the years, I have had a number of friends pass away, some quickly and some slowly. In each case I found that no matter what the spouse did, it was never good enough to my friends parents. I heard complaints that they were incapable of caring for them, they were slobs, they did not love them. The list goes on and none are really that flattering. The thing is, a parent should never have to watch their baby suffer, they should not have to watch a slow death. So judgement and feelings towards the spouse can be skewed and clouded due their grief of not being able to stop the pain or cure the incurable disease.

It seems that they only see the negative impact watching your loved one die can have on you. They see your bouts of depression as a weakness, that you don't love your wife. They don't see that you too are having a very hard time adjusting to watching the love of your life die a slow death.

My message to anyone who is faced with the horrible reality of  living with a terminal disease is this. Sit down and have a frank discussion with your spouse and any in-law that is considering moving in to "help". If there is any hidden animosity or distrust it can  be magnified 10 fold by their grief and what started out as a great thing can turn into something that could lead to some very difficult decisions.

Friday, September 13, 2013

September 13

This is simply to remember my bride on what would have been our 27th year of being husband and wife. I am a better man because of you, I miss your smile, your wisdom and your  love. Forever yours, Steve