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.
Sunday, October 21, 2012
Happy Anniversary - What's Next?
As I approach my 8th anniversary since when my ALS symptoms started,I reflect on all the wonderful things that have happened. I am still here, which is a miracle in itself! I am grateful for this anniversary knowing that the textbook life expectancy for ALS is only three to five years. I am confident that this extended time is due to the exceptional care I have received ( see 10/12/12 post) and modern technology. I want to describe briefly a few examples out of the many blessings and miracles I have experienced during this time. I often sit with my husband Steve while he eats a delivered dinner. I can hear his delight as he enjoys every bite of his meal which has been provided to us by others. Listening to Steve and Chris discuss their favorite parts of the meal brings me great joy. These Meal Angels(see 1/18/12) have been delivering meals for over 4 years. Faithful and true , these families have given a sense of normalcy to our family. This is such a blessing since our lives are anything but "normal". A hot meal at the end of the day is an incredible tension reducer for us all.
The valley in which we live is a very tight community. The churches have me on their prayer chains,regardless of their denomination. My doctors in this County all seem to keep each other informed of my progress which is very reassuring. So, as you can see,my family and I have a lot of support. I believe our residence here in this wonderful community is anything but accidental.
As many people do, I wrestle continually with the question of my purpose here on this earth. What is the ultimate reason for the rest of my life? There are countless times the Lord could have brought me Home, but I am still here. There must be a reason. In addition to giving unconditional love to my husband , kids, family and friends, I have been counseling newly diagnosed people with ALS, which has been very rewarding. Without the use of my arms and legs, the ALS has left me with my eyes, smile, brain and the use of my augmented speaking device. I have an overwhelming desire to advocate for the many people, who like me, have restricted movement and are hindered by the minimal benefits that Medicare provides. Currently Medicare only provides intermittent help when the urgent need for the patient and family is "around the clock" assistance The caregiving that provides this intermittent care must be provided by an authorized health care agency and such care is far too expensive for almost every patient and their affected families.
What are families to do ? I suppose they do something like my family is doing. They empty their retirement and college funds, sell valuables and luxury items and max out the equity in their home. Since my present longevity was unexpected,we have come to a point where we have nothing left to sell . No accounts left to drain.
We are profoundly grateful for the extra time we have been given together. I have been privileged to live long enough to see my daughter Ashton graduate from high school. This December I hope to go to her graduation from college and next year I plan to see my son Chris graduate from high school. Since the diagnosis of ALS I never thought I would celebrate our 25th wedding anniversary, we just celebrated our 26th. I never thought I would see 50, that was 2 years ago. In these last 8 years my life has been blessed in ways beyond what I ever could have anticipated . I am glad I have been allowed to stay in this life. This experience has been profoundly humbling . It has also been inexpressibly rewarding and fulfilling.
Many of you have asked "How can I help? ". Thank you! The Viking Charities has accepted me as one of their own charities. This is an unexpected gift. If you would like, and are able, to help us with my caregiving needs, you can make a tax deductible contribution to:
Viking Charities , Inc.
P.O. Box 293
Solvang, CA 93464
Payable to: Viking Charities - Heidi Good Fund
You will receive a thank you note with the necessary tax information. The contribution will be placed in an account with my name on it and the Vikings will directly pay my medical expenses. My caregiving costs $100,000.00 a year (and that includes the unpaid hours put in by my mom and Steve ) , which is 100% out of pocket. If you are unable to help in that way please keep us in your thoughts and prayers. Your continued friendship is the best blessing of all.
With love and appreciation,