Amie's Story – Why your help reminds her and Nari they are NOT alone!

The love of my life - my husband, Harper - was diagnosed with limb-onset ALS in June 2009.  He was 38 at the time and I was 8 months pregnant with our first child.  Harper was an incredibly physically capable man who loved the outdoors, building with his hands, playing sports, developing his career as an architect, being amongst friends and strangers alike, and the prospect of being a dad. 

He was larger than life.

ALS first affected his hands which he was using to construct on our house in preparation of our baby.  I gave birth to our beautiful baby girl, Nari, in July.  All of the happiness and joy in Harper couldn’t give him back the declining strength to be able to carry her out of the hospital as so many proud new dads do.

Then ALS moved to his legs, where he quickly lost his ability to walk just as Nari was taking her very first steps.  He was completely dependent on his powered wheelchair just a year after his diagnosis.  Later that fall, he was eating through his feeding tube.

On December 6, 2011 Harper died peacefully at home. This will be our first holiday season without him.

Having Nari has helped me put one foot in front of the other.  She has been our glorious light at the beginning, middle and end of ALS.  Nothing could ever dim her.  I like to think Harper gave her his light to carry on in life… and it glows so radiant and powerful.  We talk about daddy a lot.  We say good night and good morning to him each and every day.  Nari knows she had an incredible daddy who had more love for her than could be contained on earth. 

And now, he watches us and protects us the way he always physically wanted to.

Harper and I’s journey with ALS would have been extremely difficult without our friends and family.  However, our journey with ALS would have been simply impossible without our local ALS Association chapter. 

In hindsight, I think of the people at The ALS Association as our earthly community of angels who greeted us with the most caring, gentle, yet realistic and sympathetic arms.  We were not alone.  Not only did our ALS community help guide us through the jagged, blinding terrain of ALS – they were our friends.  They were our advocates, therapists, financial advisors, medical advisors, insurance agents, cheerleaders and confidants. 

The ALS Association redefined what I consider an “association.”  They were and forever will be our family.  ALS was the most horrendous diagnosis to be given.  Someone once said to me that it is a death sentence.  And it’s true.  But our family at the ALSA gave us a different perspective on what the diagnosis could mean.  They helped turn a dark, depressing and hopelessly short future into a future of thanksgiving, love and empowerment.

I miss Harper more than I could ever express.  But I know he left angels on earth to take care of Nari and me.  Among that list are those who make it possible at The ALS Association.