Reflections following a life-threatening illness

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I’ve said before that one of the goals of my writing is to offer encouragement to families receiving a diagnosis of Down syndrome. When you’re new to the world of Trisomy 21, there’s so much to absorb, and unfortunately it’s virtually all negative. It’s not a conspiracy—it’s just the nature of medicine. They study the pathology of things; anything to the contrary is subjective and emotional. In other words, human.

 It’s the human face that I want to put on the experience of parenting a child with Down syndrome, in order to counterbalance the overwhelmingly scary information that is all you get when you get the DS diagnosis. I try to focus on the laughter, the warm fuzzies, the beauty of life with DS.

 So how do I reconcile optimism with the need to be honest?

Because let’s be honest, without modern medicine…breathing tubes, feeding tubes, a slew of pharmaceuticals, and exceptional doctors and nurses…Julianna would be dead now. Twice. And she’s only two.

 It’s not something you want to think about when you’re standing at the ER admission desk. The woman behind the desk takes one look at your daughter and leaps to her feet. “Give her to me,” she says. “I’ll take her back while we do paperwork.” She’s hardly panicking, so it’s not till later that you realize what her haste means. About the time the EMT comes out wearing a grave expression and says, “Mom, come back with me.”

Suddenly all the choices I made that day flash before my eyes. Errand running. Sitting out on the swing, hoping that if I ignore her horrific crying, she’ll go on and go to sleep and get some rest. Nursing Nicholas on one side before going to the ER. The time wasted getting Alex dressed before we could go.

 Having a child with special needs is stressful at times. For some parents and situations, it’s probably most times. But the experience changes you—for the better. Parenting the special needs child is a purifying fire, to be sure, and walking through fire is never enjoyable. But love is not limited to the whole and the “perfect,” and those who begin life whole and perfect may not remain that way, as J.K. Rowling observed.

 Of course, philosophical reflection is small comfort when you’re spending two weeks in the hospital for something that other kids could kick in five days. These last two weeks, I have come to understand why kids with Downs didn’t live long in generations past. By early Tuesday morning, the simple act of breathing was draining Julianna’s body. Without the vent, she would have exhausted every scrap of energy she had left, and then she would have died.

 So, joy and love, tempered by realism, is the message of the day. The thing is, every child causes you pain and anguish and frustration and hair-pulling moments. Every child also causes you unparalleled, heart-catching wonder and joy, moments of tremendous beauty and thankfulness. It’s just that some children cause frustration by biting or throwing tantrums, and others do it by getting sick and landing in the hospital for two weeks. My point is that a child with Downs (or any other special need) is more like her typically-developing siblings than she is different. The challenges are there, but if you focus on the black clouds, you’ll miss the rainbow superimposed upon them.

A reminder I need today, in the midst of post-hospital backlash and an infant who finally succumbed to the germs floating around, and got sick.

 Sigh.

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