Gretchen is a mentor for parents caring for a child with rare diseases, cleft lip and palate, hearing loss, connective tissue disease and/or joint problems. She also offers mentorship related to audiology, plastic surgery, NICU and educational advocacy services.
Being a mom is hard work, and being a mom to a kid with a complex health condition is another level of hard. I never knew I would learn so much about disability law and rights too. I have five kids. Two of my children have a rare connective tissue disorder that manifests in many ways. The first big one is that they were born with small jaws and cleft palates. They also have hearing loss and joint issues. I have many days in the NICU. I also have a set of twins, but they are the youngest and luckily didn't spend any time in the NICU. Maybe God knew I couldn't handle another day there...the NICU is hard!
I've been to a lot of doctor's appointments, specialist therapy appointments, and surgeries but now my kids are thriving. They are bright, do well in school, and are a delight. Now, I spend a lot of time advocating for them at school to make sure they receive appropriate accommodations for their hearing loss, keeping up with their hearing technology, and just being their mom.
Caring for a child with complex medical needs can be complicated and overwhelming. Support from someone navigating similar challenges can make all the difference.