Genetic "Counseling"

I remember people at church telling us that they had "scares" in the family.  That the doctors thought something was wrong and it never was.  Looking back now, I never liked the way I felt when people said that.  It was as if they were trying to reassure me that my kid was going to be normal.  There was no reason to feel that she wasnt going to be "normal", no matter what a test said or how she was born.

 I remember that day that they told us she was too small.  She had a cleft lip and most likely a cleft palette.  She had a club foot.  I remember crying and holding my husband because I really believed that it was going to be ok and wasnt prepared for it when it wasnt. 

We sat with the genetic counselor and she explained that there are a few things it could be, such as trisomy 18 or 21.  I worked as a special ed. aide so I knew about most of the things she was explaining.  We decided to do an amnio to see what it was so we could be prepared.  They did it that same day.  I realize now it was because I was on the very edge of being able to terminate the pregnancy.  They needed the results ASAP because if I wanted to abort this baby, then it needed to be quick. 

Waiting for the call with the results was awful.  I prayed, please call and let her tell me that everything is ok.  Because, no one wants to have something wrong.  I worked and came home and coached and cleaned.  Everything was going through the motions as we waited for the call.  She called me at work.  She told me that the results were back.  There is news.  Its not what we wanted, but she is missing some genetic material on the short arm of her 4th chromosomes.  (As though that made sense to me)  Its called 4p- deletion.  There is retardation with this.  When can you guys come in? 

That was some fun times.  I hit the computer in the office as soon as I got off the phone.  (I work with my mother in law so it was ok)  We found about 2 paragraphs about this disorder.  We saw that line "Severe to profound mental retardation"  My heart was broken.  Will this baby eat?  Will it walk and talk?  Will it live?  My husband was at work so we couldn't go in that day.  We scheduled an appointment the next day to meet with a doctor.

My mom came with us as they told us the news.  I remember as they explained what exactly was wrong in my baby's genes.  She told us she was missing from 15.3 on, the worst she had ever seen with this condition.  Her life would have little or no quality.  She would only be fed through a tube and suffer from terrible seizures.  She would be in constant pain with the surgeries she would require.  She would be a burden to us financially.  She gave us a list of what would be awful about our lives.

Think about your other children.  If the baby survives, they will have to take care of her.

Most of these pregnancies miscarry, you are just too good of a momma.

If this was me, I would terminate this pregnancy.

I cant guarantee that the baby will die.

And at the end she said, We are here for you no matter what you choose.  I guess all life has value, but you need to think about what is best for everyone.

If not for my mom, we would have left that meeting scheduling an abortion to "spare" our daughter from the awful things that would be coming.  They made us feel that having her would be a burden to us, our children, the medical community and just the world in general.  We were pretty far along in the pregnancy anyway, it would have to be a special doctor if we wanted to have it done.

The night before I dreamed I had a perfect little girl, with a cleft lip of course.  But she was beautiful and looked just like her sister.  She looked up at me while I held her in my arms and it felt so right.

My husband also had a dream that he died and went to heaven.  When he got there Jesus had a beautiful little baby in his arms.  When my husband asked who it was Jesus told him, "This is the baby that I lovingly created for you.  You missed out on the many blessings I wanted to give you through her." 

I believe those dreams were meant to show us that this is the life that was chosen for us.  And it was right and it was going to be just fine.

We scheduled a meeting with our mom's and dad's and the pastor to talk about it.  Before we could get to explaining all of the bad things about the baby our pastor interrupted and said "Well, I see here that it is a girl.  What are you going to name her?"

And we said "Mercy"  And it all fell into place.  She was "there" enough to have made it this far.  Who are we to say what her life would be.  What if they were right and it was nothing but torment.  But what if they were wrong.

My husband said, "How can we bring our daughter into the world, knowing she will be in pain, suffer, and die?"  Our pastor's response "God did it."  And we felt so much better.  We knew what we were about.  We were having another beautiful daughter. 

Her name is Mercy.