Today and on the 25th of every month of 2012 I have invited 12 of the most influential people in my life to share a blog post with you! Each has influenced me both professionally and personally. My hope is that the knowledge, kindness, creativity, and compassion they have shared with me will reflect through their post in a way that YOU will be encouraged, entertained, challenged and strengthened to continue to strive for excellence as a professional and as a person.
When Bonnie first asked me to guest blog, I thought of a host of things I could talk about. Such as the many years of speech therapy that did not result in much speech. Followed by the day she handed Sarah a microphone and she started singing. Or I could talk about the day I first saw Sarah stand in front of a crowd, singing. The girl, who for seven years had a trach, and we thought she would never talk, let alone sing. Or the day that she followed a pattern by playing the drums in the order that Bonnie had numbered them. I could even talk about how Bonnie would coax Sarah to the stage when she had little confidence to stand before others on share days. But then I read somewhere that a guest post is not supposed to be about Bonnie.
So I decided to change the subject and make it about Angels. I have one hanging above my computer. I was first drawn to the ceramic figurine because it is dressed in my favorite color of purple. But it is the message that inspires me:
Angels many not come when you call them,
but they’ll be there when you need them.
In the late fall of 2009, my girl was not doing so well. By the following February, her doctor was losing hope. They could not seem to put a specific diagnosis to the downward spiral, but Sarah’s body was rejecting all medication needed to fight the pneumonia continually wracking havoc on her lungs. She was losing weight rapidly, as eating required more energy than she had. She was drowning in her own secretions. She missed weeks of her job training program, ultimately resulting in a reassignment. When the doctor mentioned hospice care, I knew I had to leave my job to care for her fulltime. What I did not know, is the job of nursing her back to health, was much greater than I could have ever imagined.
For weeks, I stayed in the house with her, trying to shield her from germs and allergens. We created a routine of medications, breathing treatments, supplemented nourishment, sleep and exercise that we followed compulsively. Within a few months, I felt she was ready to venture out. Her first stop, music therapy. Her weekly appointment with her therapist was the one place I felt safe dropping her off. It was as much an hour of respite for me, as it was an hour of pleasure for Sarah.
This first week back, I decided I better stay. Just in case. As I peered through the window, I could not believe my eyes. The girl that just hours before lay lethargic in her bed was singing just like old times. She was smiling and laughing. I’d been calling out for weeks, I never expected our angel would be in the form of a music therapist. As I watched my girl beat on those drums like Sheila E. I felt my hope return. I somehow knew that night there were bigger plans for my Sarah. Still I had no way of imagining just how grand the future would be.
By degree, Joyce Ely is a social worker, serving tirelessly in her career to help others. She has worked for children’s service agencies, battered woman’s shelters, rape crisis centers and for national health organizations. Yet her greatest challenge arrived the day her daughter was born. When the doctor suggested her daughter had Down syndrome, she quietly wept for the daughter she thought she wanted and didn’t receive. That was nearly twenty three years ago. Joyce and her daughter Sarah host a popular blog about life as a young adult with Down syndrome at www.sarahely8989.blogspot.com. They recently opened a quilt boutique where Sarah is often found stocking shelves, folding fabric and laughing with customers.