Since I’ve been employed at the patent office, I have not gone to very many of Edda’s therapy sessions. On the one hand, I’m relieved that I don’t have to take her very often because I’ve been to many, many sessions where Edda is crying and so unhappy. Also, the pace of progress (if any) is so slow and sometimes so unnoticable that it is intensely frustrating for a person like me who is more enthralled with results rather than the process. (I consider this to be a character flaw of mine, I’m working on it…)
Sometimes I think the source of Edda’s therapy grumpiness is me – Edda picks up some grumpy vibe from me (because, really, why are we the lucky ones who get to go to therapy every week instead of on playdates at the park with other preschool pals) and she gets grumpy herself. But, on the other hand, I also miss some moments of triumph.
Edda’s hand use is terrible. It’s just the nature of the beast Edda wrestles with. Rett Syndrome is not kind to many things, but one of the hallmarks is the lack of purposeful hand use. She can kind of, sort of use her hands to swat at things, but really, there is no grabbing and no pointing. (Although, for whatever reason, she can grab with tremendous accuracy a toothbrush which is in her mouth and brushing her teeth.)
Last week, Deb, our OT, and Eliana saw that Edda could somehow rally enough of her forces together and use her hands to hold herself up in a swinging swing and they were both so moved by Edda’s OT triumph that Deb called me at work and left a breathless message saying she wished I was there to see it and Eliana told me at dinner that night that she almost cried watching Edda holding herself up with her hands and swinging back and forth and back and forth.
This week, Eliana took some photos so I could share in Edda’s efforts and accomplishments. Hold on, baby! The best is yet to come.