Magazine article The Exceptional Parent

Life with Avery

Magazine article The Exceptional Parent

Life with Avery

Article excerpt

"While we try to teach our children all about life, our children teach us what life is about."

--Angela Schwindt

One of the advantages of being able to look back over the past is to be able to see how life is better in so many ways because of something that seemed difficult or scary. Bringing a child with Down syndrome into our family was one of those moments. Fear of the unknown, fear of the future, fear that we may not be able to properly care for and raise this child seemed so overwhelming at first. However, when Avery came, it was clear that she was much like our other children. She needed to be fed regularly, have diapers changed, baths taken, and be held and loved. No different than any other child on earth. Differences would eventually appear but, by then, Avery did not have an unknown future.

When presented with the opportunity to complete our family with the adoption of Avery, we did consider the realities: another baby would be hard. We'd just made it through the toddler years and were getting comfortable with restful nights and predictable days again. This new baby would throw us into chaos, and for a few more years than our other kids had. There would likely be some health issues, some therapies we'd have to consider, and a bit of a learning curve. But other than that--all we could think of was the beating heart of a beautiful baby girl who needed a forever home. We were privileged to be called.

The thing is, Avery is just like our two oldest kids, it's just that things with her are a bit ... magnified. The perception about people with Down syndrome is that they're "always happy, always affectionate, always passive and agreeable." A lot of the time, that's spot on. Avery is joy personified. She has this inner radiance that just lights up a room. People are drawn to her because she has a way of drawing people in. She's exuberant and unapologetic about her enthusiasm for life. Like ... running into the ocean fully clothed. Like taking your face in her small hands and covering it in soft, sweet kisses. Or for her obsession with the movie "Annie". When she's happy, the whole world is happy with her, and for her, and about her. She's contagious.

However, when Avery's not in a good mood, that's magnified as well. She knows what she wants and what she doesn't. She's vocal about her dislikes and her discontentedness. As a parent, often the only recourse during the mind-numbing early years is to "out-stubborn" your kids. With Avery, that may not be possible, because Avery can hold her ground like nobody's business. But that stubbornness and strong will may well be what saved her life.

When she was just two months old, Avery became sick with pneumonia. Sleeping in her carrier, we became concerned that her cough sounded strange. We took take her to the hospital but did not think it was thing too serious--until they took her blood oxygen level and the admitting nurse hit the red emergency button and the room quickly filled with medical personnel. That was the start of four weeks of constant struggle for our little 10-pound baby as she fought for life and breath. The pneumonia turned into a drug resistant infection called MRSA. Avery was on respirator and drugs to keep her body still so she would not struggle against the breathing tubes that gently inflated her lungs. …

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