Of hoarding and rare disorders.

Last night, I watched another Hoarders episode. This episode was about a single man who had adopted 2 special needs children. His son was born addicted to cocaine and had several behavior issues as a result. The man was understandably overwhelmed, and he couldn't seem to keep up. I could really identify with him and his situation.

Our daughters could be considered 'teenage toddlers'. They've got all the emotional upheaval that happens in the years associated with puberty, but they've got the coping mechanisms and understanding of toddlers to some degree. In some ways, they're a bit more advanced than toddlers, but neither is developmentally over 6 years old.

Over the years, it's been difficult, because we've been so isolated from others who share similar diagnoses. In fact, we are not aware of any other people who have the same chromosomal rearrangement they have. Our family, as well as families who have children with chromosomal rearrangements are pioneers in their own way.

Nineteen years ago when our middle daughter was born, we didn't have a computer. We had no access to support groups via the Internet. What we did have was a mother by the name of Julie Gordon who runs MUMS (Mothers United for Moral Support). Just knowing we weren't alone helped tremendously, even though we never found anyone else like our girls.

I'm thankful for the resources parents have today such as the National Organization for Rare Disorders (NORD), Unique, and CDO (Chromosome Disorder Outreach). I'll be exploring these resources as time permits. I'm hoping it will help with the isolation. It always helps to know you're not alone.

I came across this video on youtube today.



I already feel better.

I am not alone.