Many HPE families refer to their lives as a journey. In her essay Welcome to Holland, Emily Perl Kingley relates life as the parent of a child born with a disability as a much-anticipated trip with an unanticipated destination and unimagined experiences.
There is no denying that the earliest stage of the HPE journey is emotionally devastating and without hope. This is the “Why?” phase of the journey because the answer to that one-word question is what all seek but very few find.
There is also the “What if…?” phase, and that’s where one travels from hopeless to hopeful.
Next is the “What about…?” phase where new dreams and possibilities exist and advocacy becomes a focus.
And sometimes the journey transitions into the “What now…?” phase where the silence is loud and a parents’ arms were once full but are now empty.
It is a journey that is both grueling and heartbreaking, but also beautiful and momentous. Embrace the Journey.