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The safety net catches more than Congress realizes

Special needs parenting—like all parenting—is a job that’s rife with emotion. Most often, though, I find much of my heart is divided between hope and despair. 

Hope overwhelmed me when I first met my squirmy newborn, full of vim and vigor, the whole world in his tiny hands. But the despair that followed his first diagnosis, and each that has followed, has been all consuming. You grieve the future you imagined for your child and question where the world will take him. 

We received Wayne’s diagnoses in fits and starts over the past six years, an emotional roller coaster our family will always ride. Failure to thrive, a meek newborn who couldn’t quite get the hang of eating. Missed milestones and confusing doctor’s visits over the years. Tests that confirmed a brain abnormality and a less than conclusive label of “atypical white matter brain damage” and suspected cerebral palsy. And with each diagnosis came tears and questions. And paperwork.


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