Saturday, June 28, 2008

A Turning Point...

A few weeks ago, I participated in a leadership training session for the roll-out of the University of Miami Health System. I met people in departments and institutions across the huge medical campus, but one person in particular played a pivotal role in helping me stand up for myself, for Lucas's sake.

During a role-playing exercise, this nice nurse who I had just met over lunch stood up in a room of several hundred people -- she was playing the role of mother to a pregnant woman of "advanced maternal age" -- and said "She's too old to have a baby; what if the baby is retarded? Who will take care of it?" While laughter erupted in the room, her words sent shivers up my spine. See, although you go about living your life, sometimes people walk into it and say STUPID SHIT to ruin an otherwise enjoyable experience.

I sat there for the remainder of the afternoon plotting revenge (not exactly) -- what I would say, how I would say it, when would I do it...I wouldn't let this opportunity pass...not this one, I've let others off the hook, but it was time to stand up. At the end of the day, I asked to speak with her and she was very approachable so I just let it flow -- I reminded her my son has Down syndrome and as his mother, I take care of him like any parent would. I asked her not to use the "R" word which should be stricken from our vocabulary because it's never used in anything but a demeaning way and makes light of a devastating disability. I told her I needed to stand up for my son and not let people get away with saying hurtful things. Needless to say -- she apologized profusely and thanked me repeatedly for bringing it to her attention. She tried to tell me she didn't mean any disrespect and I told her no one ever does. I was so overwhelmed by the experience, I sobbed openly as she hugged and consoled me. It was a turning point in my journey as Lucas' mom and an experience neither one of us will soon forget.

Earlier this week, I took Lucas to the pediatrician -- she often uses inappropriate and incorrect language when speaking to us about Lucas' condition. Tuesday was no exception. When she said "...he IS Down's", I surprised myself when I cut her off and corrected her without raising my voice or skipping a beat, "...he HAS Down's, he ISN'T Down's" -- she stopped, corrected herself, and carefully chose her words for the remainder of the conversation. At the end of the day, if I don't use these experiences as opportunities to educate people, who will?

I think I'm getting the knack of it. Sweet victory.

Friday, June 20, 2008

Big Week for Beanie...

It was a big week in the Rhyneer household. Lucas turned 20 months and guess he decided it was time to start walking AND talking! First, he very purposefully said "ball" TWICE while handing me, what else, balls! Second, he took a couple of independent steps getting from the toilet seat to the tub. Interestingly, both of these major moves took place in the bathroom -- beanie does love his baths! I shared the big news with his speech and physical therapists -- in addition to the county-sponsored weekly sessions, Lucas goes to private physical therapy once a month -- Isabel has been seeing him since he was two months old and this morning she warned me he's ready to GO...with a little confidence building, she expects him to be walking independently by this time next month. Watch out Groucho and Roscoe!

Lucas has been steadily increasing his sign language vocabulary which is up to about 25 words and is combining 2-3 word phrases, but it's so nice to see and hear him "speak" -- he's cooking up a few more words so I'm sure sometime soon we'll be hearing others. It seems somewhat surreal to look back and remember a time when I wondered if he'd ever "do" anything -- admittedly, he was about 2 months old. There was -- and still is -- so much fear about the impact of Lucas' diagnosis on his development and as a result, his future. But one thing is true.... every day, Lucas shows us how determined he is and how much he can accomplish with some love, dedication, and support. May this be a sign of many new things to come! He is an exceptional child and our life is so much happier, richer, and more meaningful because he is our son.