Cleft Family Picnic

Over a month ago, i received an invitation in the mail to attend the Golisano's Children's Hospital Pediatric Cleft and Craniofacial Center Cleft Lip and Palate Family Picnic on Friday evening. It's a way for families to get together and share stories and happiness about their own and/or their child's lip/palate repair. It's also a sneaky, legal way to get by HIPAA privacy laws, and i love how they've done it.

I called my friend Kathy on Wednesday and asked if she could accompany me and given the short notice, i lucked out! We packed ourselves and Hank in the car and was on the road by 4:45. We arrived at Camp Eastman on BEAUTIFUL Lake Ontario around 6:30 and was immediately greeted by a ton of amazing, friendly individuals and their children who once had a bilateral cleft lip (and some, palate) like Henry. The picnic food was GREAT too: pulled pork sandwich, fresh fruit and pasta salad.

I met Julie, a woman who swears she is "MUCH OLDER" than me (I think i just looked young to her!) who looked like Henry at birth. She shared an amazing story of her surgery, the fact that her brother was born with a bilateral cleft, as well, on her surgery day (!), and introduced me to her very friendly husband and daughter. She was a blast to chat with and i just felt like i had known her for a long time. I love when you get that vibe from someone!

I met Kelly and her little guy Tanner and his sister who i think she said they adopted from Guam (and another sister adopted from Cambodia). They picked him up at 19 mos old with his teeth already emerged from his little 'nubbin.' I asked about feeding issues with him and Dad laughed, stating that he has NO problems eating them out of house and home. All the families i talked with concerning feeding issues said they've had no problem and their kids just picked it up instinctually. That was a relief, as well as confirming my gut thoughts on this topic.

I met Kathy and her son Tyler. He has some hearing issues as a result of his cleft, but he was a darling little guy, 7 yrs old, and ansy to leave after a full day of playing and interacting with other children.

I think this picnic is an AMAZING, wonderful opportunity for families to bond with each other and see how everyone's respective child is developing and healing. Some kids I saw a noticeable scar and others I saw close to nothing. It's amazing what they can do with such extreme facial deformities. I'm thrilled to have chosen this Team to go forward with Henry. I look forward to his surgery and bringing him to future picnics as a living, walking testamonial to "show off" as well. :-)