Feeding Tube Phobia

John with Benjamin moments before surgery.
John with Benjamin moments before surgery.

When you have a child with complex medical needs decisions are hard to make.  At least they are if you’re the parent.  Doctors tend to see things differently.  Benjamin has brought so many specialists into our lives.  I take these doctor/patient/parent relationships seriously.  No matter how many visits over multiple years, I’m never quite sure we all truly understand each other. Continue reading

A Milestone Birthday

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I still cannot believe my boy is 16 years old.  I’m certain all parents stare at their teenagers in disbelief.  How did time get by us?  I was never certain Benjamin would live long enough to celebrate such a milestone birthday.   Continue reading

A Day in the Park

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It was an ordinary day in the park. That was the plan. John and I walked around the black paved path pushing Benjamin, our non-verbal, seizure-ridden 14-year-old son, in his wheelchair. With cautious optimism, we eyeballed our 10-year-old son Sebastian as he rode his bike on the path.

Milestones are hard-won in our family. Sebastian has a pace all his own, like most kids on the autistic spectrum. His gains, no matter how lagging, are at the heart of my positive daily mantras. So what if he’s behind in reading? He’s reading. Who cares that he still has trouble adding one plus one in his head? He knows the important numbers: his address, his father’s phone number and 911.

In our never-ending quest to experience something normal, we encouraged bike riding. Sebastian quickly became an accomplished driveway cyclist. He was ready to move on to greater challenges. I was mindful about giving him too much freedom. The stories of wandering autistic children are plentiful. Continue reading

Time to Leave Brooklyn

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I was standing in the vestibule of a local drug store raging like a rabid dog. Clearly I was in need of a major life change. I had put it off for far too long. I won’t make that mistake again, although I will never be able to change the underlying cause of my troubles.

Stress is the common mistress my husband and I both keep. We are infused with her presence. We pretend to forget her existence. When she dares to surface we do our best to suppress her influence.

Fourteen years ago my husband John and I welcomed a son. It was Benjamin who first matched us up with this queen of heartache. He was born with a rare neurological disorder. He cannot walk, talk, or use his hands. He has seizures daily. He has endured six surgeries, countless scans, EEG’s, blood draws, and takes a total of 27 pills daily. Our ten-year old son Sebastian reaffirmed the queen’s status when he was diagnosed on the autistic spectrum. Thankfully he is not quite the picture of the classic autistic child but we don’t expect to suffer from empty nest syndrome. Parenthood certainly didn’t turn out the way we planned, but we habituated. When you have children with disabilities, your base is so skewed you get used to unreasonable norms. I suppose that’s why my moment took me by complete surprise.

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