Even though she was no longer able to sit anymore and she was slowly losing her fine motor skills, Ethan found ways to interact with Hannah
One of our biggest concerns during Hannah’s illness, especially during the last few months of her life, was how her disease and her loss of skills and interaction was affecting her older brother. There were very few articles published anywhere on the internet, and the ones we found were mostly discussing sibling loss as a typical kind of family loss where someone dies unexpectedly.
But kids like Hannah who live with progressive and degenerative diseases don’t pass unexpectedly. Ethan and Abigail watched as their sister learned skills such as playing with toys, crawling, cruising along the couch, and eating refried beans with her hands. Her developmental delays due to her disease meant she reached these milestones much later than developmentally normal kids, but they celebrated each new milestone right along with us.
They also watched her loss those skills over the course of a year to the point where she could no longer even roll over or hold anything in her hand. As the disease progressed, it was more difficult for them to be interactive with her. She eventually needed a tracheostomy to breathe and a G-tube to be fed. She went from being a child with “special needs” to being one that was “medically fragile,” requiring many ER visits and hospitalizations.
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