Monday, July 29, 2013
E has been keeping up with her Chinese and practicing reading and math via her school website and has had a handful of play dates, never enough really for an only child. She's watched too much TV (insert My Little P*ny) and has barely read even one book (her least favorite activity). There are new challenges in physical therapy as she learns to navigate the world with this loss of sensation in her left leg. As she often says to me "It just feels like there is nothing there, like when I crawl, and it's like being in a hole". This weekend, she shared that "I just want to walk like other people mama" amoung other things she'd prefer to do just like us. I could only validate those feelings and let her process them. I refuse to sugar coat her life or tell her "But look at all the things you CAN do". When her grief surfaces, I've found that what is best for her is to experience it- somehow this allows her to move past it and never fear that she will be judged for what is in her heart.
I worry constantly about her future. A child of color, raised by white parents in a white family, who moves in this world differently than all of us: adopted into a culture she didn't choose, wheels for legs :) She remains shy yet confidant, and is a natural leader. It borders on bossy but I know one day this trait will only stand to serve her.
I continue my efforts to find all that I can about her past, which at this point is precious little. DNA testing has shown me that she is Northern Han (a majority group in China) and we have connected with 2 or 3 very distant cousins... so far, trails are cold. I have become an avid reader of news in China, corruption that is rampant in their IA program and trickles down to children with special needs (though it's not suspected in Ellis's case). I've had a birth parent analysis done by B. Stuy (very worthwhile for us) and keep in contact with her foster home, New Hope. If I have to take out a loan to get back to Beijing and Jiaozuo next year, so be it. It's just time to go.
As for me- well, work has changed. I've let go of the petty political BS and have embraced my role as a "healer" (never thought of myself in quite this way). I love my patients, my co-workers, and am constantly challenged and enlightened by those who fight for their lives. Cancer sucks, but it isn't without its gifts.
E is the same bright, healthy, growing girl-and a constant source of joy in all our lives. Our house is in need of major overhaul (floors, carpets, roof, broken garage door, screen door, peeling kitchen cabinets, accessibility accessibility accessibility-etc)... but we are content, and happy, and our lives are full. I couldn't ask for more.
Posted by kitchu at 12:27 PM
Thursday, July 11, 2013
A second spinal cord surgery, done. She is pain free, but not without new challenges. We are making the best of it and hoping for gradual and lifelong improvement.
And now that surgery is past, we acquired a new wheelchair thanks to our friend Hayley and massive fund raising efforts (this chair allows Ellis to move over terrain she never has been able to independently before), and visited some family we miss like crazy- Aunt Kimmy and crew drove out from Texas to say hi... our girl has proven she is ALL about family. She truly adores each and every last one of them, from grandparents to aunts/uncles to cousins.
And then we squeezed in a wonderful trip to a beautiful aquarium just 2 hours south of us...
Such a blast, can't wait to do this again.
Here's to the rest of the summer and memories in the making!
Posted by kitchu at 9:00 AM