Pandora's box

I have a pit in my stomach right now and I'm second guessing my choice in beverages as I type out this post.  I think I might need something stronger than a diet pepsi but...oh well.  I'm about to open Pandora's box and let all of out.  I'm ready to set it all free.  Bear with me...I'm definitely not eloquent with my words and I hope most of this makes sense!  Please don't judge me.  When going through any life-altering experience, you really can't control your thoughts and emotions.  They come at you like the waves of a tsunami.  It is what you do after the water recedes that truly matters.

The day Hailey was born, I believe I lost some of my innocence.  Most women go to the hospital so excited to meet their precious new baby.  We've already played out our labors, deliveries, births and even the baby's homecoming in our heads from the day we find out we are pregnant.  We "know" that things can go wrong but we truly don't believe it...not truly in our hearts...not me.  We go around saying "as long as he/she is healthy"....as if that makes the world perfect...as if we wouldn't accept it if that is not what we get.  To say the day Hailey was born was not what I had planned in my mind is a gross understatement.  There isn't a single part of Hailey's birth that went as I had dreamed.  You know you read those pregnancy books...in them all they say that it is good to have a birth plan but be prepared that it may not go as planned.  Ha!  I already knew that....with Brayden I had pitocin, epidural and the vacuum and with Ian I had pitocin, epidural, 6 hours of pushing and then an emergency csection.  So far, none of my children had followed "my" birth plan.  Why on earth, did I think the third would be any different?  Part of me was looking forward to a planned csection.  I thought some of the pain wouldn't be there.  I might actually be awake, aware, rested enough to enjoy my baby girl's birth.  When we made that second trip to the hospital, no part of me gave it a thought that I was too far in the labor process to not have my csection.  By the time they hooked me back up to the IVs, I was in pain.  I will admit though, this pain wasn't like the other two.  It wasn't pitocin.  I frequently refer to that has the devil.  I preferred regular labor.  I was anxious as they wheeled me into the operating room and sent my sister-in-law out to put on scrubs.  I was scared that my husband wasn't there (and to this day, I remind him that he missed it).  I remember grabbing the anesthesiologist by her white coat demanding something anything to lessen the pain.  Little did I know, it would be the easiest pain of the day.  She smiled sweetly and responded, "Honey, your little girl will be here before the medicine would start working.  You can do this."  I followed with a loud scream of, "No, I can't!" and Hailey was out.  I was anticipating some complications since Hailey was a little over 4 weeks early.  I anticipated her lungs not being mature and I waited for that cry.  It was weak.  I tried hearing what everyone was saying but everything seemed okay.  No one hesitated.  There were no whispers.  My husband and sister-in-law walked in within moments of Hailey's birth.  I wonder if the shock of my delivering natural (a successful VBAC) and the speed of her birth, overshadowed anyone "seeing" it. 

They needed the operating room so they then moved me into a birthing suite.  The nurses cleaned up Hailey and handed her to me.  I looked at one of my good friends and asked, "Does she look like she has Down syndrome?"  I didn't think she did.  I was just so worried since I was "advanced maternal age", I wanted someone to say "No".  Then I followed it with, "She's not cute".  I'm quite embarrassed by that comment.  How superficial!  Not to mention...how cute can anyone look after being torpedoed into the world the way Hailey was.  I think that was just delirium talking...I find my little girl to be absolutely beautiful.  I apologize to her daily for saying that sentence or even thinking it.   Shortly after that is when my world started its downward spiral.  I tried nursing and Hailey went blue.  They called a nurse from the NICU to try to get her breathing better but they had no luck.  The nurse, Hailey and Jason then rushed to the NICU.  The mood in the room wasn't bad.  We just assumed she would need a little oxygen for a few days and we would be well on our way.  I had two nephews go through similar experiences so I wasn't worried.  I was with family and friends.  We were joking about how fast everything was...I was starving and wanted to get out of the bed.  That is when Jason returned with a doctor I didn't know but I could tell by their faces that something was worse than just a little oxygen.  The neonatologist started with explaining her lungs weren't developed enough and she was wearing a cpap and the oxygen was quite high at the moment but he hoped to decrease it over the night but we would have to watch how things go.

Let me preface something...my husband is calm....he doesn't show much emotion...he was gray...he was heartbroken.  The words that followed hung in the air like a dense fog where you can't see your hand in front of your face..."Your daughter has characteristics that lead me to believe that she has Down syndrome".  I don't remember much of the next few hours.  Everything is in bits and pieces.  Maybe that is a good thing.  Maybe my brain doesn't want my heart to remember all of the pain or the intensity of it all.  I do remember asking what I now think is the dumbest question in the world, "What do we do with her?"  I think I was asking how do we care for her...how would it be different than my boys at home.  But the way the words came out...they sound crazy.  The doctor answered quite appropriately, "She's your baby.  You take her home.  You feed her.  You love her.  You take care of her the same as you did your sons.  You take any delays as they come."

I know we told our family.  Let me rephrase that.  I told our family.  Jason couldn't get the words out.  He said they were stuck.  Our families were positive, God bless them, but I could see the pain in their eyes.  I felt like I let everyone down.  I had done something wrong.  My body had failed again (I had a miscarriage shortly before Hailey's pregnancy).  We all prayed and then I don't know what happened.  Maybe that is when we went to see Hailey...maybe I had already seen her...I honestly don't know.  Let's just say, we went upstairs to see Hailey.  I remember looking down at her and not knowing how to feel.  I knew she was my child...she is the one I delivered...but she wasn't my child...not the one I dreamed of.  She had the cpap on and her oxygen was so incredibly high.  I think at the highest she was on 80%.  They had her arm boarded with IVs.  I was so scared.  Would she be okay?  Would our family be okay?  Would we ever be normal again? 

I think eventually our family left.  I'm not even sure.  Someone took care of the boys.  Right now, I'm not even sure where they stayed.  We have fabulous families and friends.  I knew I didn't have to worry about them.  They were untouched.  They were innocent...they didn't know. Those next 8 hours were like walking a long dark hotel hallway lined with doors.  The problem...the longer I walked the longer the hallway became...the narrower it got...and it was dark.  There was no light at the end of it.  I was lost and didn't know where to turn.  My husband said that day was like driving 65 miles an hour down the interstate, a brick wall appearing out of nowhere, and hitting it...coming to a complete stop.  Our life stopped.  We both dealt with our pain separately through those deep, dark hours of the night.  He was restless and disappeared a couple of time throughout the night.  I tried pumping a few times through the night.  It was the only thing I felt that I could control. 

The light was welcoming but also daunting.  It meant we had to face the world.  We had to face our families and our friends.  We had to find a way to deal the road ahead.  So, I do what I do best...I avoid as much as I can for as long as I can.  I showered, fixed my hair, put makeup on.  I tried to be normal.  It didn't work.  I spent the next two days crying.  I was disappointed in the hospital staff those two days.  They put a large piece of paper on the door that was handwritten with "SCN"  which stood for special care nursery.  It let the staff know my baby wasn't in there.  What it meant to me was they ignored that I had a baby.  They asked how I was but never mentioned Hailey.  It was like writing a scarlet letter across my chest. 

I was released two days later but I didn't want to leave.  My baby was still at the hospital.  Part of me was still there.  How could I leave her?  She needed me.  Over the next few weeks, Hailey became my job.  I would go there shortly after my oldest left for school and I would come home around 4 or 5 to spend time with the boys.  Jason worked part days at work and spent some time at the hospital.  He doesn't do well sitting still but Hailey found her spot on his chest and they napped together every time he was there.  It is still her favorite spot today.

The emotions of the first few days were intense, frightening, exhausting.  I was mad.  I was mad at the world.  I was mad at God.  I was mad at myself.  What had I done in my life to deserve this?  What had I done wrong?  Why me?  Why Hailey?  Why my family?  Why not the lady down the hall?  Why not someone else?  Why would God do this to anyone?  I think I was mad at every person I knew and every person I didn't know in those first few days and weeks.  I was mad at every person that I felt was giving me the "pity look" when they talked to me.  I didn't want people to pity me.  I didn't want people to pity my family...my daughter.  I didn't want anyone to feel sorry for us.  I was mad every time someone said, "She was born into the right family."  "You are the perfect parents for her."  "If anyone, it should be you guys."  What in the he** does that mean?  What we do that we "deserve" an "imperfect" child (I know this sounds awful but in the those first few days, that is how I felt.)  I hated it when people said "Oh, you're stronger than me.  I couldn't do it."  Really, what choice did I have?  I didn't choose it.  I'm not a superhero.  I'm just a mother.  I was annoyed when people would say, "She's special.  She will teach us stuff. "  She's just a baby.  Let her be a baby! (yes, I know people mean well...I was just mad!)  I was mad because other people were living their lives "untouched" and mine had stopped.  It wasn't fair.  Ohhh...I was mad.  I was mad at church...I was mad at our neighborhood...I was mad at everyone at the grocery store.  Life was not normal anymore.  My world had changed and I wanted everyone else to know it, feel it, live it.

I was scared.  What do I know about a child with special needs?  How would I deal with this?  How would the boys do?  What will her limitations be?  Will life ever be normal?  How would people perceive her?  Will people always pity us?  Will our friends and family accept her and love her the way they do the boys?  Would I love her the way I love the boys?  Will I be a good enough mom for her?  Am I strong enough for her?  Would my husband and I be able to handle everything?

I was jealous.  I was jealous of every woman I saw for months with a typical baby.  I was jealous they didn't get the eye opening experience we had.  I was jealous they didn't have the worries I had given to me.  I was jealous they were able to leave the hospital with their baby.  What made them different?  Why didn't it happen to them?  Why did they get the "easy" road?  Why was their baby okay?  Why did my baby girl have to struggle from day one?

I was frustrated.  I'm a type A...borderline OCD person.  When something is wrong, I want to fix it.  I couldn't fix this.  I couldn't go back and change anything.  I couldn't "fix" my daughter.  Everything was 100% out of my control and I didn't like it!

I mourned.  I mourned the daughter I had dreamed of.  I mourned the dreams I had for her.  I have mourned before.  I've had family members pass.  My mom passed when I was 5.  I don't remember much of her death but I have mourned it at different times in my life.  I was fortunate to have a wonderful step-mother that has been a great mother to me and a great grandmother to my children but I still have the pain of losing my biological mom.  I dated a boy in high school who passed away after a year of us dating.  I have felt heartbreak but this was so much worse. 
 
This emotion may not come out right as I'm typing it.  I was embarrassed.  I purposely chose pictures of Hailey in my emails and when I posted that did not "show" Down syndrome.   Some people knew.  Some people didn't.  I didn't want some of the physical traits of DS to be like a flashing neon sign that said "DS". 

I felt lost.  I didn't know anyone with DS.  I didn't know anything about DS.  I didn't know where to go, who to turn to, what to do, when to do it.  I felt like someone in the middle of a giant lake in a rowboat without any paddles. 

Those few weeks with Hailey in the hospital helped me.  They helped me step into my role as Hailey's mom.  It took awhile for me to bond as her mom because she isn't what I expected.  She wasn't who I had dreamed about.  She wasn't who I asked for.  God switched those two girls out on me.  I didn't know who this little girl was (or so I thought.) 

So in a very large nutshell, that is how Hailey's diagnosis felt.  How those first few hours, first days felt.  I hope every mother who gets a surprise diagnosis or gets a prenatal diagnosis...all emotions are acceptable.  There is no handbook to parenting.  There is definitely no handbook on what you feel or how you feel.  There is no wrong emotion.  Every emotion is acceptable and each person deals with them and through them in his or her own way.  I felt that what I was feeling was wrong.  I was embarrassed that I had these feelings and felt it made me less of a person because of them. 

Because of the fabulous women I have spoken to in our local DS association and the blogging world, I have learned it was all normal and that it is part of the process of accepting the wonderful role as Hailey's mother.  God has blessed me with the perfect little girl.  She is part of me...she is part of my husband.  She is the daughter I didn't know I wanted.

Now that I have opened Pandora's box and showed what was in there.  In the next day or two, I will let everyone know how I'm doing putting them all back in the box and filing them away.  I know they won't always stay there.  Every now and then...some of them creep out the lid but nothing will ever be like those first few days and weeks.



I think these pictures shows how she helped dissolve some of those feelings and how we evolved.

Right after birth...not to the NICU yet

Off of the cpap...in less than 24 hours.

Look at those proud brothers

Oh no...are you sure they are my parents?

I became superstitious in the NICU...we kept the circles on to ward off the evil cannula spirits :-)

I think we are all going to be okay.

Look at this beautiful face...no tubes!

Life is good!