Once Upon A Time...The Deaf Performing Arts Network And BARNEY

Once upon a time, before being diagnosed with M.S. [before 1999]. I was a full time nurse in a home care setting. I had never heard of THE DEAF PERFORMING ARTS NETWORK. Then, I was the primary nurse caring for for a 3 year old deaf child on a ventalator and trach in Olympia, WA.. Wish I had known about this then. XXXXX loved music. And, all those children, that I cared for over the years, seemed to love music, and they all became 'my' children after awhile. I still love them. 

I [Jan] have seen that children have a natural love of music and dancing AND XXXXX was no exception, he would love to 'dance' and 'sing' with his non-deaf twin sister. They both loved BARNEY...and would 'sing' and 'dance' along to the T.V. program, or with the BARNEY videos.... XXXXX  opening/closing his mouth copying his twin, no signing needed to express his joy. I watched both children jumping up and down...thrilled with the music! FUN. I just had to join in.
 It was hard to believe XXXXX couldn't hear..but, he'd been to CHILDREN's HOSPITAL in Seattle, his Mom and I had taken him. The doctors' and parents were sure. They also said that XXXXX would not walk as an adult because of a spinal birth defect. But,  for now we all 'danced' and 'sang'. with no hint of slowing down for him or for me.

Perhaps? I'd hope,..... the doctors can't know everything, could they?.....Especially, when Steve would come and bring his guitar. XXXXX sure looked like he was listening to 'jiggle my toes', and wanted to play the guitar too. Steve would help him hold hold the guitar and pretend. XXXXX would love Steve's attention and I remember HIS GREAT BIG SMILE. He'd be  over 15 now, a young man. Amazing how time flys.

We went to visit XXXXX after I had been diagnoised with M.S., I couldn't work anymore, XXXXX seemed very concerned with my difficulty walking, and he had a back brace on too...perhaps, he was remembering our fun jumping up and down, 'dancing' and 'singing' with BARNEY, or the times he had played the guitar with Steve?   I wonder....hummmm.

Even though time has marched on,.... XXXXX and I have not changed much, yes , I don't get out of the house anymore, but I still love you XXXXX, and in my head, I can now create BARNEY's music, whenever I want, and, dance or jump or sing or be with you  again..... AND,You're ALWAYS 3, ALWAYS smiling,.... and NEVER on a ventalator, you ALWAYS have perfect hearing. we know NOTHING about walkers or wheelchairs. AND,  We both sing and dance perfectly...... WOW!....Cool.
I remember, 'I love you , you love me...were one happy family'.   That's all. Jan

Photo by Fantaz cc