History

Maggie apparently has some fans. Yay! And there has been a request from two of the coolest fans, eight-year-old twin girls. They want to know more about Maggie’s past and how she learned some of the things she knows. I am flattered and delighted to try to answer these or any other (appropriate) questions.

But I have a confession. I am not sure how Maggie learned to do some of the things she does. She is a smart girl, that is for sure. I am going to post stories from the past occasionally. Maybe we can figure it our together. The best place to start is the beginning.

Maggie’s incredible medical journey began when she was developing as a fetus. The best estimation is somewhere between 6-8 weeks into my pregnancy, something went awry. It’s not anyone’s fault. Sometimes that is how nature works. Because that is so early in the pregnancy, there are some very central things developing; and I mean that literally – the center of your body is forming. Almost everything that is different about Maggie is right in the center of her body.

Of course, we had no idea this was happening. From the outside, everything seemed fine. I went to the doctor regularly, took care of myself and did all the tests. The tests showed everything was fine and that we could expect a healthy baby girl. Obviously, the tests were wrong. That was fifteen years ago and the tests only went so far. I do not know if the issues Maggie had show up on tests today or not. We were very excited to learn we were having a girl. (After two boys, we were looking forward to a change.) I am glad we learned that early and celebrated it. There wasn’t much to celebrate the day she was born.

Our first indication of a problem was about an hour after Maggie was born. She was about 4 weeks early, so the delivery room was full of doctors and nurses. However, that did not worry us; her older brother was also born a bit early. We knew the drill. Or so we thought. They took the baby away to the NICU, checked her out, cleaned her up and brought her back. But they didn’t come back. Instead the doctor showed up at the door and said simply:

“I have to talk to you about your baby.”

We knew right then that things were not going according to plan. I will never forget that moment if I live to be 1000 years old. That was the moment we knew; our lives had changed forever. We were frightened ,worried and very sad.

However, we did not know then that while Maggie would face unbelievable challenges, the changes she would bring to our lives were just that: changes. Some were bad, some were good; and all of them have been an adventure.

Maggie was born on March 3rd and had to stay in the hospital until May 21. Those 11 weeks in the Neonatal Intensive Care Unit (NICU) were our first introduction into our new world. We saw unbelievable things, both good and bad. Over those weeks I learned when and what to question and what to accept. The nurses helped me trust my maternal instinct and encouraged me to speak my mind. I’ll bet they regretted that.

Once I found my voice, I never shut up.