I must begin this post by stating the obvious. I am not a scientist. Biology was the one class in high school I almost failed. In fact I had to go to summer school in order to restore my grade point average. In both undergraduate and graduate school I avoided all things science by first going to Parson’s School of Design and majoring in Fashion Design and later did my graduate studies in Creative Writing. Science courses did not play a large role in either of these majors. That I now find myself steeped in science, stem cell research specifically, is more than a bit ironic. And I have to say my avoidance of science is not serving me well in these on-going conversations with some of the most highly regarded stem cell specialists in the country.
Tuesday Richard and I had more disheartening news regarding the stem cell treatments Emma underwent. We spoke with another stem cell specialist. He told us if the donated umbilical cord blood from which they harvested the stem cells was from a male, then she could develop troubling complications as she reaches puberty. Another specialist we spoke to an hour later refuted this claim. I will not pretend to understand or repeat all that was told to us, suffice it to say, the news was not good. On an optimistic note, we are learning a great deal even if I am unable to articulate all of it and there are some very positive things happening on the stem cell front in this country, just not so much with autism.
Richard and I are scheduled to speak with several other stem cell and autism specialists within the next few days. In the meantime we are doing our best to manage our fears. And it really does come down to just that – management. I allow myself a specific time frame, say five minutes, in which I let myself think every frightening thought and then I tell myself – okay. Time’s up, you have to think about something else. As an entrepreneur, there is always work to be done, so this technique works well.
I am ending with a scene from yesterday afternoon.
Emma returned home while Richard was on another phone call. Emma patiently waited a minute then went to his computer to watch a youtube video of the Beatles singing Happy Birthday.
“Emma, I’m on the phone you’ll have to wait,” Richard said.
“Have to wait,” Emma said, turning the video off. She stood in front of the computer waiting.
“Hey Em, it’s Geneva, do you want to talk to her?” Richard asked, hoping to distract her.
“Yes!” Emma said, taking the phone from him. “Hi Geneva!” Emma said.
“Hi Emma! How are you?” Geneva said.
“No, not going to see Geneva on the airplane,” Emma said, shaking her head.
“No you’re not going to see me on the airplane…” Geneva began to say.
Emma interrupted her and laughed, “That’s so silly!”
“But you’ll see me when you get back to New York,” Geneva said.
“Okay. Bye Geneva!” Emma said brightly and then handed the phone back to Richard, before turning back toward the computer.
“Not yet, Em. You have to wait til Daddy’s off the phone,” I reminded her.
“Wow! That was the longest phone conversation Emma’s ever had with anyone,” Richard said.
“Yeah, that was great,” I agreed.
“Hey Emma, do you want to talk with someone else?” Richard asked, holding out the phone to her.
Emma nodded. “Hi,” she said.
“Hey Emma!” Joe’s voice was heard to say.
“Is your stomach still hurting?” he asked, referring to the 24 hour stomach flu she just had.
“Yeah, bye Joe!” Emma said cheerfully and then placed the receiver back in the cradle.
“Em! Your stomach doesn’t hurt and you just hung up on Joe! ” Richard said.
Emma gave him an impish grin and began to laugh.
“You want to listen to your video, don’t you?” Richard said, laughing.
“No you cannot hang up on Joe!” Emma said, giggling. “Now watch video?” she added quickly.
“You hung up on Joe so you wouldn’t have to wait any longer, didn’t you?” Richard said.
“Watch video?” Emma said, grinning.
For more on Emma’s therapist, Joe go to: http://www.emmashopebook.com/?p=615
I had a feeling that’s what happened. I looked over at Geneva in shock and said “I think Emma just hung up on me.” After a brief pause I realized “she’s probably laughing as we speak!” Glad to hear her stomach’s better. Thanks again for the recognition in your blog! See you in a few days!
btw, the link should be http://www.emmashopebook.com/?p=615#comments
Yes, I noticed the link was wrong. It changes each time we add a new post. But I’ll change it for now. Looking forward to seeing you soon!!