The First Day of Our Journey

October 11th, 2013

~11:00 pm; The flurry of emotions that have just occurred in the last 30 minutes can not be described.  A combination of fear, disbelief, anger all coming from the very core of my being in which there is no way to control or hide.  I can't remember if I cried immediately when the doctor told us that Deacon had Down Syndrome.  I know I cried after he left, but I think that I was in such disbelief I couldn't immediately cry.  Now when I look back, for the first 12 hours of his life I truly believed Deacon was a perfectly healthy baby in every way.  But then again..... The old adage "hind sight is 20/20" is certainly true, but I think we often think we remember things differently than how they actually happen.  For example, when Deacon was born I definitely thought he had big cheeks.  Was that a sign of DS?  Did I ask myself, "Is that normal"?  I really have no idea.  There were 10,000 thoughts, feelings, and ideas running through my brain, body, and heart.  It seems like forever ago, and Deacon is less than three months old.

I do remember feeling a huge growing anger inside of me.  So much that it was hard to contain.  I have always felt that I have an even keeled temper.  I have a slow fuse, but once the fuse had been burned, watch out.....a volcanic eruption.  You may wonder what would make me mad....well at the time I felt cheated.  God was punishing me for something.  When I look back I realize how ridiculous that idea was.  I was angry at the doctor for telling me my son had Down Syndrome, and it was no fault of his.  I was angry that it had not been caught on any of the three ultra sounds we had.  I was mad that it happened to me, when actually nothing happened to me.  I was angry for selfish reasons.  Deacon was still......Deacon, and I loved him no matter what.  Julie, our family, myself, and everyone else that saw him was blinded the first 12 hours of Deacon's life by love.  We didn't see that he was Down Syndrome, or did we?  I really don't know.  As I mentioned when I look in hind sight, maybe we did know before anyone told us.  Julie is adamant that when she first saw Deacon she knew something was "different".  She never said anything, no one said anything, but inside she thought there was something off.  I don't know, but I don't think I had any idea.

For all of you healthcare professionals here is some advice; don't lie to your patients, or your patients parents.  The one thing that still bothers me to this day is that in the first minutes after Deacon was born when the nurses were cleaning him up and assessing him one of the nurses looked at another nurse and said, "He has lines on his hands."  When this occurred, I was standing 18 inches from that nurse and I asked point blank, "What does lines on his hands mean?"  Her response was, "Oh nothing, we just look at that to judge gestation."  That seemed like a perfectly logical explanation to me especially since Deacon was about three weeks early.  My problem now is that a line across the hand is a marker for DS and the nurse knew immediately that Deacon was DS.  That pisses me off.  Don't lie to my face.  I understand that nurses can't make a diagnosis, but come up with something better than that.  Tell me that a line across his hands can be a marker for multiple things, don't just blow me off with a lie so you don't have to answer a tough question.  I am his parent, I deserve the honest answer when I ask the question.  That is my personal opinion and advise for anyone in the healthcare field that ever finds themselves in a similar situation.  Now, off my soap box.

If you remember from my last post my sister was in the room when our pediatrician told us that Deacon had Down Syndrome.  I remember glancing at her a couple of teams and the look on her face; a true 'deer in the headlights' stare.  I think if she could have disappeared or just shrunk to the size of an ant and crawl out of the room she would have.  It was an awkward situation for sure.

Once my sister quickly left the hospital, there was an awkward silence between Julie and I.  I don't know why there was, but it was there.  The elephant in the room..........who happened to weight 7 lbs 6 oz and have an extra chromosome.  I honestly will admit that I didn't take the news well.  My wife Julie is amazing.  Based on my demeanor she rightly questioned what I was thinking.  My love never faltered for Deacon.  I will love all of my children equally no matter what and he would not be an exception.  I had a huge fear inside of me.  Fear of the unknown.  I was in no way prepared to take care of a Down Syndrome baby because I had no idea what he would need that might be different from our other three kids.  I kept thinking to myself, maybe the doctor is wrong.  Maybe its just not true.  Google can be a dangerous tool.  It obviously gives us access to unlimited information.  Some of it is good, some of it is bad.  You can get information overload.  Julie and I never had any genetic tests, or had an amniocentesis performed, because it would not have ever made any difference.  We are firm believers in the rights of unborn children.  Deacon is already a sweet baby and I can't fathom the thought of aborting a pregnancy.

It was a late night for Julie and I.  We told our immediate family about Deacon, to their shock, but the rest of our friends and family had no idea.  There was a lot of reading on the internet, lots of tears and emotions, but it was the first day of our journey.  A journey that will take us down a path not yet known, but that's OK, we like surprises.   :)