I met someone new at church on Sunday, and we started talking about Alexandra’s diagnosis and subsequent surgeries. She asked me “Don’t you feel robbed?” referring to the things you miss when you are constantly dealing with medical issues with a newborn. I have to admit, I have thought about that many times but try not to dwell on it.
I missed being able to just relax (if there is such a thing!) and enjoy being a first-time Mom. The first six months were an absolute blur, and it didn’t get much better over the next two years. After her diagnosis with hypothyroidism at six days old, we had to administer daily medication. At eleven days old when she was diagnosed with the heart defects, I think we went into shock. I couldn’t even look at her without bursting into tears. We also had to begin a course of additional daily medications. It’s not easy giving a newborn multiple medicines throughout the day and night! Then, of course, there were the doctor appointments! Between the pediatrician, cardiologist and endocrinologist, we were at a doctor’s office two to three times a week for most of her first year.
Her first surgery in Philadelphia came when she was 5 1/2 weeks old, and the second was at six months old. Each time, we were there almost two weeks. In between those surgeries, my Dad died of a heart attack related to years of diabetes. If you haven’t been through a similar situation, you can’t imagine the constant stress that is always surrounding you. Everyone worries about their children; however, this was really something to worry about not knowing how things were going to go.
Things eased up over the next two years, but knowing that a third surgery was coming always loomed in the back of our minds. Also, during this time, our support group lost a couple of members ranging from newborn up to over three years old. It was devastating to be reminded how fragile these little lives can be.
So, was I robbed? I guess in a way, maybe. The one thing that bothers me the most is that I missed catching all the dates of when she did something for the first time. However, at the risk of sounding cliche, the experience really has shown me how precious life is and, while it’s not always easy to remember, we must try to make the best of each and every day no matter what is going on in our lives!