The National Advocate for People with Down Syndrome Since 1979

National Down Syndrome Society
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My Inspiration
Anna and Eric at the Checker Auto 500 in Phoenix (11/08)
Anna and Eric at the Checker Auto 500 in Phoenix (11/08)
My Inspiration

At the end of May, my brother Eric celebrated his 24th birthday. A milestone he was never intended to reach. As a baby/toddler, Eric suffered from pulmonary hypertension with an enlarged heart, chronic pneumonia, had a tracheostomy and was on a ventilator and went through a fundoplication" not a pretty sight. At the age of 2, my parents struggled to keep his weight at 15lbs. All the doctors would say was "make him comfortable" and plan for him to not live past the age of 4 they didn't know what it was or how to fix him. At that point, my parents decided to bring Eric home they were not going to let him die in a hospital bed with strangers - they wanted him to be near HIS family, HIS bed, HIS toys...HIS life. So, Eric tootled around the house with 100 feet of ventilator tubing, liked to play outside and antagonize the home health nurses by threatening the take out his trach and locking them out of the front door...all while standing in the window, pulling out his trach and coughing " then putting it back in. This hardly sounded like a 3 year old on his death bed " but, as we were told, it was not if but when he would go into respiratory failure...then things would get ugly. And so my parents were cautiously optimistic but also focused on giving him as normal of a life as possible for the time he had left...all while hoping for a miracle. My parents are amazing people - they took care of this boy...they raised him and loved him more than you can imagine, even though they felt him slipping away. My parents sunk everything they had into Eric's care. From time to money to sacrificing jobs for him to be near good doctors, to living off credit cards so that they could be at the hospitals. It was these sacrifices that cured him because they were there. One day, my mom fed us spaghetti for lunch. As normal as that was, Eric's trach suctioning after lunch was not. His secretions were orange " the color of diluted spaghetti sauce. This continued with grape juice, Kool-Aid " anything with color. My mom told the doctors he was aspirating and they said "Deb, we did the swallow test already, he's not aspirating." Despite this she persisted and they did another swallow test " this time milk with blue dye. And sure enough, his secretions were blue...and this is where the tables turned " in our favor, for once. Eric underwent a fundoplication to correct his aspiration. After he was healed, his pneumonia and pulmonary hypertension dissipated, his heart was stable and the trach came out. He was healthy and he was going to live! Then, in 2000, he got strep. No big deal, we thought. Well, we were pretty wrong on that one! He got sicker and sicker and sicker. After being airlifted to Phoenix Children's Hospital, he was on life support for 2 weeks with septicemia and Acute Respiratory Distress Syndrome(ARDS). Again...the doctors said he likely would not survive. And...again...he did. Eric would get ARDS again in 2008 and would, again, survive. All against the odds. Fast forward to 2009. My brother has grown into such an amazing young man. He graduated from high school in 2004 then graduated from a vocational education program in 2007. He is living in a group home with 3 roommates, he has a job at a sheltered workshop for adults with developmental disabilities, he goes to dances where he dances with "all of the girls." He desperately loves NASCAR (Kevin Harvick, Dale Jr. and Smoke!) and I try and take him to a race at least once per year. He lives for Shark Week on Discovery Channel and snakes at the local zoo. And these are the things we weren't sure he would ever see. But my brother is a fighter and one of the biggest inspirations of my life. Over the last 26 years, I have constantly held Eric responsible for who I am and who I've become. Yes, he pushed my buttons and made me crazy, but he taught me so much about life and how to fight, even when someone says it can't be done. So, this is a celebration of my not-so-little man, aka "chicken legs," "Bubba" and "Jethro." And as Eric always says, "Somebody...stole your...shoes" (followed by a snorty laugh). Well, Eric...you stole my heart. I am so happy I still have you here to share life with and I thank God every day that you are here. You are my miracle. Thank you for enriching my life with yours.




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Monica Mendoza, United States, CO
2/11/2013 12:04:47 PM
I love your story. It made me cry. I hope my baby brother will graduate high school one day too. That's going to be such a happy day. I keep telling people that we can learn a lot from them too. Many that are my family believe that they are sent from God to families that need more Love in their hearts. I know for a fact though that they are going back as angels completing their mission on earth.

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