Perspective

Like my girls, my second experience with PUDM was even better than my first.

I like to think my speech this time around was better (Julie?) and just having been to two others as a Riley parent made a difference.

I was even approached by several of the other parents of Riley kids.

Our first time there? One mom (not counting Julie, who...duh) approached me after my speech to tell me that a friend of hers had received a 5p- diagnosis prenatally. She said that her friend's doctors told her that her child would be blind, would never walk, never talk, would be unable to eat independently. She chose to terminate.

This is not a bash on that woman. Who knows what her doctors saw on the ultrasound? Who knows what was going on? But also...who knows what that baby might have been capable of?

It was one more time when I was grateful that we didn't receive Olivia's diagnosis until she was two years old.

Anyway, this past weekend, I had actual conversations with no fewer than four parents of sick/special needs kids.

What a great opportunity to feel connected.

One mom, whose daughter has Down Syndrome, talked about how lucky she felt to have had her special needs child first. She went into parenting with no preconceived ideas of what was going to happen.

She was also grateful that her child had such an obvious diagnosis. (She joked that her daughter would share some of her extra chromosome with Olivia since O is missing part of a chromosome.)

I thought it was wonderful that she and I connected even though our perspectivesare so different.

I am grateful that I didn't know Olivia's diagnosis right away. I am grateful that Olivia was my second child.

Alyssa was a text-book child. She had her fussy moments around 4pm - 9pm every night for about a month when she was about four weeks old, just like the books suggested she might.

She wasn't the best sleeper, but then, text book babies usually aren't. She crawled early (before she even sat up one her own,) she walked early, she was speaking in full sentences when she was 15 months old.

While I knew that you shouldn't compare one baby to the next, I knew that Olivia not holding her head up at nine months old wasn't normal, or even on the slow side of normal.

Because I had Alyssa as a model, I was able to get Olivia the early intervention she needed even without a diagnosis (also thanks to the gentle prodding of most excellent friends.)

I knew that even late walkers were walking by two years old. Olivia wasn't, at which point, I started pushing for a diagnosis.

One of the greatest things our developmental pediatrician told me was not to research 5p-. She said that the data is old. It's based on children who'd been institutionalized. She told me to take Olivia home and let her show us what she could do.

Five weeks after we received her diagnosis, she was taking her first independent steps.

She's been showing us ever since that we can't stick her into a mold that says "5p-" and expect her to stay there, doing (or not doing) all the things others before her had done or not done.

She's very much an individual and I'm grateful that I was able to get to know our Olivia before knowing anything at all about 5p-.

Yet, I can respect the perspective of that other mom, the one who took her sweet, sick baby home from the hospital armed with a diagnosis and a plan of attack. She knew what she was facing but still knew that her daughter was an individual who would also carve her own path.

I feel so lucky to be able to watch this little girl and my own show us the paths they want to take, to be able to follow as they mow down the stereotypes and show the world that they are more than their chromosomes.