This Friday when we attend the hearing-impaired play group at the preschool Andi might attend, we are supposed to meet a family whose 19-month old daughter also has CHARGE Syndrome. In our 2 years and four months of living with a CHARGER, this will be the first CHARGE family we've actually met in person. I'm excited to meet them, and honestly a bit nervous. I don't socialize much anymore and sometimes feel I let the stupidest things fly out of my mouth. Last Friday, I met another Mom whose son is also g-tube fed, and has trouble holding his head up...things we've been through with Andi, and I felt like I unleashed the verbal diarrhea of what we've been through. It's almost like a verbal resume, 'look, here's a glimpse'. It's awkward, and something that rolls off with very little effort. I imagine after the horror of what Andi's had to overcome, I seem a bit brazen with my resume. Luckily, those of us who have been through it, or something similar, it's received with a nod of recognition, empathy, understanding. It's what I imagine a survivor of Hurricane Katrina goes through when meeting a fellow survivor. Interesting dynamics that bring people together.
Andi is finally wearing her hearing-aid full-time. It's such an amazing change from having to hover over her for the full five minutes before she'd tear it out. It's been such a nice change. She's also walking eagerly with her non-medical walker. If only the room was bigger, she'd get more practice. But, she's managed to walk one direction until she runs out of room, and sometimes she'll navigate herself to the other side and push herself back across the room. It's pretty cool to watch. Another thing Andi is doing is saying and signing, "A, B, C, D" and "1, 2, 3" today we worked on "4, 5, 6" which is pretty fun. She is such a little sponge, just eager for more. It's such a nice change from where we were two years ago now... home, but on oxygen and just weened off Methadone and Ativan. Getting to this side was hard, but, we're finally here. And I'm excited to see what lies ahead.