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.

The Samantha Years

Nothing’s Wrong?

The Schichtel family spent the long weekend at home. Since it was Veteran’s Day, we were hunkered in our bunker! Sorry, still a little punchy and suffering from cabin fever. Samantha was running a low-grade fever, fussy and had nasty ‘goo’ oozing from her ear. All this and she was on antibiotics! Something wasn’t right

Any condition outside of normal puts us on alert with regards to Samantha. A urinary tract infection put her in the hospital, fevers lead to seizures…we get concerned. After three days of staring at the baby, I made an appointment with Children’s Hospital.

“I think she’s ok.” My husband said.

“I need to know she’s ok.”

I loaded up the car this morning and Samantha and I headed down to Denver (about an hour drive).

“She looks good this morning.” Our doctor said.

I listed my concerns and what she had been going through this weekend…sleeping a lot, fussy, high temp. “I just think something’s not right.” I said.

Our doc ran numerous tests, we were sent down to the lab, even sent up to ear, nose and throat to check her gunky ear.

Guess what? Nothing is wrong! She’s getting over an ear infection but it’s clearing up nicely. Blood work, urine, everything came back fine and no seizures since Saturday (keep your fingers crossed!)

Mom radar is still on high alert but it was nice not to be right!

blog

Super Sam and Cool Kayla

People move in and out of your life. You never know when someone will step up and fill a place you never knew was empty. Enter Pete, Kristy and Kayla. Kayla is a beautiful nine-year old with an inquisitive mind and a love for pizza and ice cream. Pete and Kristy are her devoted, committed, intelligent parents.

Kayla has a crazy metabolic condition that only 300 other people in world have. She has spent so many days at Children’s that the CFO of the hospital sent Pete and Kristy a Christmas card. It was one of those odd moments….. “oh hey, we got a Christmas card from the CFO…crap…they know us so well…we’ve been there so often we’re getting Christmas cards.”

When Samantha got sick, Pete and Christy embraced our family. What’s even more impressive is that Kayla embraced Samantha.

“Hi Sam,” Kayla says every time she sees Samantha. “HI SAM!” when Samantha doesn’t respond. Kayla never asks what’s wrong, just accepts Samantha for what she can give.

Kristy and Kayla came to visit Sam when she was in the hospital in August. Kayla had never visited another child in the hospital. She had been there many times as a sick kiddo but never as a visitor. Kayla wheeled her chair in, proudly donning a bright red balloon for Samantha. “HI SAM!” she said.

Kristy and Kayla stayed for a while. Doctors did there rounds, nurses came in and checked on Samantha. It never seemed to bother our brave Kayla. Brave Kayla who came back into the place where she had been poked, prodded and very sick in order to see her friend Samantha.

Christy and Kayla left after an hour or so. I found out later that Kayla started crying when the car left the hospital parking lot.

“Hey Kayla, what’s wrong?” Christy asked, glancing in the rear view mirror.

“I’m sad because I get to leave the hospital but Sam doesn’t.”

Wow. I heard this and I thought about how lucky we are to get to know Kayla and get to know her in way that we never would have had Samantha not been sick.

We have all left the parking lot feeling sad that we get to go home, out, enjoy the sunshine and Samantha doesn’t. Kayla just had the intelligence to express this….maybe because she’s been there so often, maybe because she just loves Samantha and wanted her to go home too. Regardless, Super Sam is very lucky to have Cool Kayla in her life…we all are.