Embrace the Journey
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.
What a lovely description of the path we all follow with this (and many other) diagnosis in our lives. Although I have never been a good enough person to say that I’d not have our family any other way even if I could, after some trouble I have come to embrace the here and now and am immensely grateful for what we have.
Wishing all the best to everyone here.
Susan, mom of Beth, septopreoptic HPE
A fellow parent forwarded this to me and of all days I needed the message of HoPE. I once told a conference of cross disciplines professionals who work with our precious children that my one HoPE would be to live one day longer than my child to ensure her happpiness in life.