Betsy's Story

The whole reason I think I am blogging is to connect with other mother's like me. I am in a dark place lately, and am only slowly seeing the light. In August of 2004, I gave birth to my third baby. A beautiful girl, our first girl. She came via c-section (another first for me) because of her breech presentation. She weighed a healthy 7 lbs. 7 oz. She had great apgar scores, all in all, a normal Cesarean delivery. We named our sweet girl, Betsy Jane. I felt high on life. Each and ever birthing experience is quite spiritual, and this was certainly no exception. I was relieved to put an end to a pregnancy riddled with severe morning sickness, complete with iv fluids because I could stomach nothing else. But it was all worth it, at that moment in August, when they placed her healthy, little butt in my arms.

The following months were a blur of nursing, two active toddler boys, nursing some more, and reflux, yet another first for us. When Betsy was not quite 4 months old, I started noticing little things that bothered me. She made no attempts to move; no head movements or rolling attempts. She also didn't appear to have reflexes that many new babies have. She would smile, but did not visually attend to anything. I said something to my husband. "Don't worry, all babies are different." I didn't buy it. Next, I approached my mom. "Well, I was going to mention something about her eyes. I think you should talk to the doctor." Ah, the Eternal Pessimist, she's always good for a spoonful of reality.

At the 4 month check-up, my fears were not put to rest, but rather I was told the DOCTOR would make Betsy an appointment with a pediatric neurologist. The doctor left, after handling me with the utmost care, and when he returned I was told the neurologist would see us in 2 weeks. Fast forward through the second worst wait of my life (more on the very worst later), the neurologist confirms there is a significant delay. "I propose some initial tests that I would like done as soon as possible. Can you drive down to Children's Hospital this evening to get started?" Whoa, slow down!

What followed was months of diagnostic tests and questions about my pregnancy (including about 3,678,878,293 people asking me if I drank or used drugs while pregnant. Uh, no and no). We saw geneticists, eye doctors, orthopedic surgeons, the neurologist. It was a whirlwind to say the least. Every procedure included anesthesia because of her low tone, even her MRI. And at the end of those months of testing, Betsy had no diagnosis.

Betsy is now 5, and still has no diagnosis. (Well, technically, it is static encephalopathy. This is a catch-all term, much like, cerebral palsy. Click here to learn more.) The good news for us is that she is healthy as a horse. She attends special school 4 mornings a week, and receives occupational and physical therapy (OT and PT), speech therapy, and individualized classroom instruction. More importantly, she has her family. We love her and support her, and celebrate every accomplishment, no matter how small, with her. She is special, no doubt, and we rally around her in a way that is normal to us now. She IS the odd girl out, but in the very best sense.