The news hit me like a ton of bricks when, 2 years ago, doctors told me that my son, Taylor, had Angelman syndrome, a genetic disorder causing developmental disabilities, epilepsy, absent speech, and neurological problems.
It was a humbling time as my husband and I realized that we would need assistance to help our son.
I was not used to asking for help. To be honest, I didn't even know where to start.
Thankfully, the hospital had a social worker available who had suggestions about where to go for services such as counsel or daily needs. One agency mentioned was Catholic Charities.
I called and was not prepared to share my son's diagnosis. It was new to me. But I informed the receptionist as much as I could. Afterwards, she asked, "What do you need?" and I told her about the diapers. She told me when to come by.
When I arrived to get the diapers, the receptionist asked if there was anything else I needed. "How about bibs or tee shirts?" she asked.
I was floored. I hadn't even gotten that far in my thought process and here I was, essentially, a stranger walking in off the street. I am not Catholic either. That didn't matter, I learned. They wanted to help.
I left Catholic Charities that day with my son in my arms and holding onto the hand of our two year old daughter Sterling who was just barely walking...plus diapers, bibs and t-shirts...more than I could have ever imagined. I also had hope.
Several months later, I called Catholic Charities again. I didn't need diapers, but something else. Advice.
I mentioned that my son was starting to climb out of his baby bed and that we would need to find something different for him. With Angelman syndrome, there is no sense of limitations and boundaries.
"Hold on," she said. "I think that we just got something in." She came back to the phone and informed me that a Pack-n-Play had just been donated that morning...a perfect solution.
Having the Pack-n-Play allowed his grandparents to watch him overnight and it kept him safe! When you have a special needs child, it is hard to find people willing to help. The Pack-n-Play gave us options.
My son's disorder is incurable. Giving up my job to focus on early intervention (for occupational, physical, aquatic, and speech therapies) has been a blessing, though. He's coming along well.
Recently, it became apparent that I am being called to follow another path...to become an advocate for raising awareness in the community about Angelman syndrome. Annually we host an awareness~ fundraiser event for Taylor to help with his living expenses; a portion of the proceeds is donated to the Angelman Syndrome Foundation.
I am the listening ear for someone in need and support...just as Catholic Charities was there for me, a stranger in need, no questions asked.
I enrolled in the Tennessee State University Social Work program (BASW expected 2017).
My son will always need someone like me; other families will need someone like me, too. It is because of people like those I met at Catholic Charities that I was inspired to want to do what they do.