He'll always be different

These were the wise words my mother offered me almost nine years ago after the birth of my youngest. He was born with Pierre Robin Syndrome, which brought with it much confusion, tears, questions, surgeries, multiple hospitals, teams of doctors . . . and, in short, a whole new way of looking at parenting, and, well, the world.

There is so much I could say, such an involved complicated story to share about almost-nine-year-old's journey from a beautiful, but very sick little man into the funny, charming, bright young boy by my side. Today we are celebrating one specific milestone in his journey--the end of speech therapy. He "graduated" from his IEP at school this week--which marks the end of a journey that started when he was only a few weeks old with dear Donna, the ever-patient therapist who visited our home weekly to help us get Ethan to eat. Being the stinker that he is, he fought us tooth-and-nail--he would have none of what we were offering. We (okay, at least I) was in despair, thinking that he might never eat by mouth . . . until one day Donna had a brainstorm that maybe it wasn't that he didn't want to eat by mouth, but rather that he didn't want to eat all of the liquids and paste-like things we were giving him. She offered him a graham cracker well before a typical child should get crackers, and he went for it! About a week or so later, Daddy was in the kitchen cooking chicken, and little man started pounding on his highchair, trying to signal that he was hungry. On a whim, Daddy ground-up some chicken and little man gobbled it up in a flash! We should have known back then that almost-nine-year-old just wanted to do this eating thing "his way."

From those first months of feeding, we moved into teaching little man sign language so that he could communicate even with his tracheostomy. From there, we moved to getting to hear his voice with the Passey-Muir valve, and then, finally, decannulation, which brought with it a break from therapy for a while. When preschool rolled around, it was time to help my now precociously verbose little comedian with his consonant blends, s's, r's, z's, and all other sounds that required him to move his mouth and tongue in ways that were never natural to him.

We should have known that his little stubborn nature would also be one of his best assests, as he dug his heels in, determined to be a rock star speech student. After some major orthodontia the past year which caused some further pronunciation setbacks, he has worked even harder, and improved leaps and bounds. His brother no longer has to "translate" for him when others can't quite understand, and he came home all a-grinnin' yesterday, and announced at supper that he is "done with speech--Mrs. Dunneback said I'm done for good!!"

We are so proud of our little monkey--nine years ago I could have never imagined that our little man would be the bright, kind, funny, and verbal dude that he is. Mom was right, he'll always be different, and so will we for getting to be his parents.