The Samantha Years

2, 4, 6, 8 Everybody Advocate!

I’m a sucker for a cause; always have been. In high school a group of us piled into my rusty station wagon with the Greenpeace bumper sticker. We headed down to the local Burger King to protest their use of Icelandic cod. Iceland commercially hunted Minke whales….we had our cause.

“Hold the pickles! Hold the lettuce! Icelandic whaling really upsets us!”

Now, I always thought the people down at Greenpeace could have come up with a better lyric but no matter. I felt empowered. I was saving the poor little whales from the big, hairy Icelandic fishermen.

I read later that Iceland is a very environmentally conscious country and whaling was legal and monitored very closely. Hmmm…well then I felt a little silly. So I had a Whopper.

This was my issue with protesting, there was always another side, I was easily swayed and my causes changed with the wind.

Twenty years later, I have found my cause; Samantha. She’s as cute and cuddly as a baby seal and heck…if I can’t advocate for my family, who can I get out there for?

Samantha qualifies for state aid which is a double-edge sword. We find ourselves saying “Great! We qualify!” followed by “Well crap, she’s sick enough that we qualify.”

With state aid comes paperwork, battles and bureaucracy, more than I ever thought possible and we’re not even in the school system yet! With every election comes budget cuts and reductions in funding and social programs. All of this directly impacts our family and thousands out there. Bring on the signs and picket lines!

Then there is the human aspect. I advocate to meet other people and hear their stories. Great stories….a man with cerebral palsy who struggles to get every word out proudly telling about his job at Target, a young lady who just got her own apartment and is living on her own, a teenager with Downs Syndrome who recently went to her 3rd prom with the ‘popular kids’ in a limo. Wow! If I ever feel down, sign me up for one of these meetings. I realize that Samantha is so much more than milestones and tests’; she is a person who will grow into her own self.

The main reason why I advocate so strongly for my daughter is very self-serving. It’s empowering. It makes me feel that I have some sort of control. I cannot control the crazy, rare, genetic condition she has. I can only do so much to control her seizures and sometimes I watch helplessly as the milestones pass. I can however, try to change the type of world that receives Samantha. Whether it be attending a typical kindergarten class, finding gainful, competitive employment later in life, or getting apartment of her own. The things I do now, the ruckus I raise, will help her have a better life. Better cause? Nah, I really can’t think of any.

5 thoughts on “2, 4, 6, 8 Everybody Advocate!”

  1. HI Heather (Bart and Samantha, too),I never have much time to catch up with emails, websites, blogs, etc. but after receiving Cynde’s email today, decided to finally take a few minutes to go to your blog, I’m really happy I did. Your story of Sam and Kayla was touching and brought back memories of when Bre was at Children’s Hospital. We’re all extremely lucky to have such a fine facility close enough that our children can take advantage of the expertise and care their staff can provide. I hope little Sam doesn’t have to spend anymore time there, but if she does, thank goodness for it being here. I hope we can see you all during the holidays, we miss you. All our love to you, Bart and Sam.Chuck and Sue


  2. You continue to be an inspiration Heather! Thank you for sharing Sam’s story. Think of you so often. Happy Thanksgiving to your family. Lots of Love to you~Katie Kerckhove


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