Heather’s daughter was born with Wolf-Hirschhorn Syndrome, a rare disorder, resulting from a deletion of genetic material near the end of the short (p) arm of chromosome 4. 4p- is the shorthand name shared between families dealing with this challenge. As Heather puts it: “the hard truth: that walking and talking and eating by mouth are no longer givens. That when you have a child with 4p-, everything you expected about life as a parent is ripped out from under you like a carpet, and beneath that carpet, no ground. Just air.
However, the focus of “Notes from the Land of Beauty and Difficulty” is upon the community shared between 4p- families at an annual conference Heather attended with her family:
When the conference ended, she and her family were “outside” once again:
And sometimes, in real life, there is a moment when someone is able to give her the gift of care. From her post, “Disability Grace Notes”:
About the Caregiver Blog of the Week Award
The Caregiver Blog of the Week Award will recognize the most outstanding, beautiful, uplifting, painful and/or moving story of the week blogged by a caregiver.
Caregivers are the unsung heroes of our world. Caregivers who not only do the more-than-fulltime work of caregiving but also write and share their experiences with the world deserve to be recognized and honored. Each week our team will sift through the caregiving blogosphere and select a winning blogger, blog or blog post to be honored at CAREGIFTED.ORG. Email us at firstname.lastname@example.org to nominate a Caregiver Blog of the Week.