Amanda’s Story

Last year I wrote a series of blog post Entitled “3 years ago”, they recounted our journey from the ultrasound on March 16, 2004 to Amanda’s Birth on July 13, 2004.   I have not done the same thing this year as I  didn’t feel the need to completely revisit the entire journey.

Amanda would have been 4 years old this summer.  The old cliche says “Time heals all wounds”  or  the less caring one “Give it some time you will get over it” nice huh?   I don’t particularly like any of the sayings people come up with when trying to comfort someone after they have lost a loved one.   But there is some truth in them.   The more time goes by the easier it is to get out of bed everyday.  The easier it is to see a pregnant woman with out a stabbing pain in my gut.  But its not easier because I miss her less, love her less, or think about her less.

The best way to describe it is the grief and pain is like an open wound.  In the beginning it hurts like Hell and all you can do is think about how much it hurts.  As the wound begins to heal the pain is less but it is still very sensitive and any little nick will open it up again.  Like seeing a pregnant woman or a newborn baby.  Each time the wound opens again it heals just a little faster then the time before.  Then as more time goes buy the scab gets a bit stronger and it takes more to open the wound again.  And eventually the wound heals leaving a scar as a reminder of your journey.

I am to the point where it takes a good bit to open the would but it is not healed over yet.   To this end I have taken a step back from a few things I was involved with.   I was very active in Angels in Atlanta, a service organization that helps families dealing with childhood cancer.  In the beginning my wounds were open all the time and these families pain didn’t add to my own.   But as time went by every time we heard about or read about a child losing the battle and the struggle the parents were going through to pick up the pieces my wounds would open again.  I have reached a point where I can’t handle the constant pain and suffering mine and the families we were helping.   I need to heal.  I still keep up with the Angels in Atlanta website but haven’t volunteered for anything since before Christmas. I don’t know if this is a temporary break I do hope I can continue my support for this wonderful organization at some point in the future.

So 4 years later I am still healing but everyday gets easier and harder at the same time.  The realization that Amanda would be 4 years old this summer is mind boggling to me.  It seems like a life time ago but at the same time seems just like yesterday.

When a baby is destined to die

The link above is to an MSN article about Poor Prenatal Diagnosis.  This article does a very good job of describing what its like and how the world around you looks upon you when you choose to carry a baby to term that is destined to die.  The questions the looks of not understanding our choices.  Along with the support and compassion for our choice.

This is the one section of the article that speaks volumes.

Both options — to terminate or continue the pregnancy — are heartbreaking.

“It’s the worst news that anyone could get — that your child is going to die,” says Schoonveld. “These horrible feelings aren’t going to go away with a termination. But the flip side is that they’re not going to go away after a baby is born either. … For many families it’s their first real parenting decision.”

Many have family and friends who are mystified as to why a couple would continue a pregnancy knowing their child will die. Loved ones often fear that by continuing on, the parents are simply delaying their grief or torturing themselves. What will they say to strangers who casually ask if the nursery is ready? And what if bringing the baby into this world causes the child suffering?

But for some, the pregnancy feels precious because it may be the only time they’ll get to be with that child, says Schoonveld. “I think most people who have continued want to experience as much time with the baby as possible and want to hopefully meet the baby.”

Other families may have religious reasons that guide their choice. Sometimes parents may hold out a hope that somehow the terminal diagnosis was wrong. And others just don’t want to be the one who decides when their baby dies.

“Don’t assume we’re Luddites or religious fanatics,” Kuebelbeck says. “Don’t assume we’re saints. We’re just parents doing the best we can.”

We experienced ALL of the above!

Initially I was very torn about our decision.   I didn’t think I could carry a baby for 5 more months knowing he/she was going to die.  But on the flip side I also could not be the one to make the decision to end her life.

So many times Tony and I were told how strong we were and how amazing a job we did and how we were such an inspiration.  We really didn’t understand and still don’t.  So many people told us they didn’t think they could do what we did.  My response to that is “You do what you have to”.  We didn’t make our journey alone.  Our faith carried us just as our Lord carried Amanda to heaven that day in July.

I am encouraged that carrying a terminally ill baby to term is becoming more accepted.  And hospitals and birthing centers are becoming equipped to deal with this situation in a compassionate way, because I know not everyone has a positive experience like we did when Amanda was born.

Kim