The inequity of life

There are so many things I have lost, besides my daughter. Try as I do to maintain a positive attitude in the face of irritatingly persistent challenges, I can't help but think of all the things I have lost since December 29th, 2010. My sense of joy in life, for one. When she died, part of me died too. You are robbed when your child dies. The losses are emotional, psychological, physical, financial, social. Just like any other violent assault or trauma, healing is painfully slow. The scars never go away.

I look around me and I see people that otherwise look a lot like me on the outside. Yet for the most part, their lives have not been devastated the way mine has. Probably some of the have troubles, maybe even significant pain. Some of the others basically lead a charmed existence, where things just fall into place for them, without much work or worry or disappointment.

I see the gap widening between myself and others. Their lives seem so foreign to me. What must it be like to have a life without carrying this heavy weight?

The inherent inequity of life: it just is the way it is. It seems that for me, things just cannot come easily, at least not right now. Maybe not ever. It seems very strange to me when people look me in the eye and say, "I just know things will get better for you." I don't know why they would say that. Maybe things will get better, or maybe they won't. Maybe they'll get worse. That's always a possibility.

Of course, I should add the perfunctory remark about being grateful for the blessings and good fortune I have had in life. I most certainly am thankful for the positive aspects of my life. It's just that the most precious, sacred act I have ever attempted ended catastrophically. It's not as if I was trying to broker peace in the Middle East, win the Nobel Prize in Physics or any other unrealistic goal. I was just trying to do what we are all born to do. It didn't seem that unreasonable an expectation.

At this point, I have just come to accept that for some of us the road is harder. I don't know why we have been chosen for this. It's just the way it is.

Congenital Heart Disease Awareness Week

This week before Valentine's Day has been designated as Congenital Heart Disease Awareness Week. Our Angeline was lost to a severe congenital heart defect. Like many babies who die from this devastating condition, Angeline's heart defect was not diagnosed prior to her death. Many babies are not diagnosed until they show signs of respiratory distress after delivery. It may be minutes, hours, or days until their condition is apparent. Some babies are actually discharged from the hospital with undiagnosed congenital heart defects, and in some cases, their parents experience the horror of unexpectedly losing their new baby at home. I had read Cora's story a number of months ago. Her mother and others are working to promote a very simple and completely painless newborn screening test: pulse oximetry.



Cora's story: http://www.corasstory.org/

Year of the Water Dragon

The Chinese New Year began on January 23, 2012. This is the "year of the dragon," as you may have heard. According to Chinese tradition, the dragon is an auspicious creature: it symbolizes power, luck, good fortune. Of course, the year of the dragon is a highly desirable time for a child to be born, according to those subscribing to this philosophy.

2011 was a really horrible year in so many ways for so many people. I personally know a number of people for whom it was easily the worst year of their lives, myself included.

I do believe that the tide may finally be turning. I feel in a way that a black cloud is lifting. Maybe it's just my imagination, but I really don't think so.

On the other hand, surviving the first year after the loss of you child is in itself an accomplishment and a relief. There is nothing that can compare to the early raw emotions, the prolonged and enduring sadness, the heaviness of the all of the "firsts" without your baby. Further, I did not have the comfort of the promise of a new life while passing each milestone. We have faced many challenges that would provide material for another blog altogether. And amazingly, I survived anyway.

This year, I have already decided, will be different. Will be... good? Can I actually go so far as to say that? Yes, I still miss my sweet Angeline every minute of every day. I always will, but I have to find happiness, joy, excitement and other good things here in this live without her. I am grateful to be surrounded by living angels here on earth who lift me up, day in and day out. They have convinced me that there are better times ahead.