Wednesday, November 19, 2008

Learning to talk

Today I had lunch with a guy I used to work with. He's not a close friend, but he's more than just a colleague. We used to go for coffee almost every afternoon. He has young kids too and we'd talk about our families and bitch about office politics. And though he knew our twins were born prematurely and spent time in the NICU, I never told him about Drake's PVL diagnosis or his delays. At the time, Drake was just a few months old and we really had no idea how it would affect him. And I had found that when I did tell some close friends about it, though supportive, all they wanted to know was "How did it happen?" and "What does it mean?". I had no answers for either of these questions, so it was always an unsatisfying conversation.

Today at lunch, he asked about the twins. I told him they had recently turned one and were doing well. "Are they walking?", he asked. I told him Lucy was close to walking, pulling up on furniture and cruising along whatever she could reach. "But Drake has some delays due to being premature", I said. "He is just mastering sitting". He kind of nodded and I couldn't tell if it was because he didn't remember when babies are supposed to master skills or because he was looking for more information. So, I continued with the second stock phrase I use when feeling pressed to explain further. "He's in physical therapy", I said. "He goes a few times a week so that he can be caught up by the time he's three."

I know it's a lie. I know he won't be "caught up" by age three. But, saying this usually makes sense to people, explains all my appointments and is often the end of the subject. But today, I felt empowered to continue. I don't know why, maybe it was the beer I was drinking, maybe it was this new-found voice for talking about Drake (hence this blog). I said to my friend, "You know, if he isn't caught up by three, then they have to diagnose him so he can continue getting therapy. The diagnosis will most likely be cerebral palsy". And there it was, the big CP word laid out there on the table with my friend knowing nothing about it except the worst, like I did before I had Drake. He seemed a little taken aback. "Whoa", he said. "Yeah", I said.

I explained to him that CP doesn't necessarily mean being bound to a wheelchair, like I, too, had thought. I explained that it's an umbrella term used for many movement, balance, and coordination issues. He listened and was sympathetic to how hard that must be for our family.

"But everybody says Drake's case will be mild", I said. And while it's true doctors and therapists think Drake has a lot of potential to lead a fairly self-functional life, I realized that I was still lying. To myself. Talking around the issue, making it seem better than it is. We still have no idea what lies ahead for Drake.


Anonymous said...

I talked some about looking into the future - last Saturday's post. I'm hoping you have someone or others closer to you than the net for support while you work-through your feelings about his delays.

Kelly said...

thanks barbara, i do. i just find the unknown difficult to face, especially because i am a planner by nature. :) it's probably good for me, is what my husband says. he's probably right. :)

Anonymous said...

I have just found your blog. Although my little boy's start to life was very different (born full term and experienced birth trauma) I can identify many of the emotions and experiences you are describing.

I'd like to say that I really don't think you're lying when you tell others about the future. What I think you're really doing is hoping for the very best future for your wonderful child.

I think the best thing we can do for our kids is NEVER underestimate what they might achieve - after all, they're going to have other people doing that to them their whole lives. We have to teach them to believe in themselves no matter what xo.