The Smith-Mekosh Family

As told by Jay Smith, founder of Every 90 Minutes on Oct. 21, 2016:

Three years ago everything in my life seemed to be perfect. A growing business, two amazing girls, ages four and six, and a loving wife who has been by my side since we were 18 years old. We moved from New Jersey to Texas in 2010 for a simpler life – and got exactly what we were looking for. We couldn’t have been happier. Spending our weekends on the lake, camping, playing sports, and just being together.

Smith-Mekosh family

Then I started to get sick. It started with my speech slurring after a beer, something I brushed off as getting older, like the thinning hair on top of my head. Then my hands started getting weak and we knew it was much more serious.

After months of testing it was official, I had ALS, a disease with a life expectancy of just 18 months, during which I would lose my ability to walk, talk, eat and eventually breathe.

Instead of crawling into a hole and taking pity on myself, I decided to take it head on and live my life with purpose, love and intention. We started the Every 90 Minutes Foundation to raise money for ALS research, and I started writing about my story on our Facebook page and for the Huffington Post. I was determined to put a face and humanity behind this seemingly rare disease which many had no clue about. That turned out to be the easy part.

Living with a paralyzing disease isn’t easy; it takes a toll on your family, friends, and your bank account. The average cost to keep an ALS patient alive is over $200,000 a year. Between the caretakers, equipment and medical supplies, the costs to stay alive are unfortunately too much for the majority of patients.

And the toll it takes on your kids is tremendous. They have had to watch their father – who used to be able to toss them into the pool – waste away, unable to even say “I love you” before they close their eyes at night.

Earlier this year I had to be taken out of the house on a stretcher due to a life-threatening infection. As the paramedics were wheeling me out, my youngest daughter asked, “Is this the day my daddy dies?” I can’t even imagine what it must be like to only be in kindergarten and having to worry about your parent’s mortality on a daily basis.

There is no manual on parenting this way; no magazines or websites dedicated to teaching your kids how to deal with the enormous weight that they have to carry with them. I think we’re doing well as parents during all of this, but I don’t know where we would be without the support of Wonders & Worries.

From the first session over a year ago, to the visits they now do in school, Wonders & Worries has provided the support for our kids that we can’t, and quite frankly wouldn’t be able to afford right now. It’s amazing to see how they light up after each session. They have been able to express their emotions, talk openly about my disease, and actually grow from this experience.

I am still a very active father but my role is changing. Every night my daughter ends grace with the line, “I hope my family lives happily ever after.” And every time it shatters my heart into pieces.

I can no longer hug my children, talk to them about their day, pick them up from school or teach them how to play sports.

But I can still show them how to live a life full of love and help them create their own version of happily ever after.

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