The Hailey Herald

The Hailey Herald

Tuesday, January 31, 2012

Trip "Back Home"

48 hour trip...9 hours in the car...9 hours of sleep...30 hours of cousins, nieces, nephews, giggles, fighting (cousin squabbles), grandparents, and fun.  The boys kids (I have said "the boys" for 4 years...I am still adjusting to a girl!) and I headed "back home" to visit both of our families.  My husband didn't make it due to work.  I get a little stressed traveling with the 3 of them...Hailey is not known for being the best traveler and my middle son likes to ask about 20 minutes into the 4 hour drive "are we almost there?"...every time!  The drive went well.  Much better than the drive at Thanksgiving by myself.  Although, mommy did "snap" about an hour from our destination.  Over the past 8 1/2 years of motherhood, I have listened to my fair share of children songs, Bear in the Big Blue House, the Wiggles, Little Einsteins, every Disney movie that has been made on DVD, Dora, Diego, get the picture.  So I decided, it was mommy's time.  I informed the boys I was introducing them to "new" music.  I plugged in the iPod and we listened to Queen, Elton John, Michael Jackson, the Jackson 5, ColdPlay, Lynyrd Skynyrd, AC/DC and Bon Jovi...please don't judge...I promise there was no foul language!  I really just could not listen to Toy Story 3 another time!  The boys seemed to enjoy it.  They even asked for some of it on the way home.

It is hard to describe where my husband and I grew up.  They are both rather small towns.  I graduated with 76 in my high school class and my husband only 57.  You "grew" up with everyone in your class.  I still talk to some friends that I met in kindergarten.  You knew everyone....their brothers, sisters, dad and grandparents probably even knew their parents and grandparents from years/decades before.  It was neat.  There are a lot of people from both of our classes that moved back to the areas after graduating and are raising their children there now.  I grew up in a very rural area but my parents moved to a small town close to there shortly after I graduated college.  Not much changes there over restaurant will move to another side of will will reopen.

My husband's town is even smaller than where my parents live.  It is so bad over the weekend, my sister-in-law wanted to call time and temp to see what the temperature was outside.  She asked my father-in-law if the number was the same (from when she lived there 18 years ago), I said "of course, it is...this is L*****".  My father-in-law laughed so hard he almost snorted.  I replied, "What?".  He said, "Yup...not much changes here."  Time sort of stands still there.  Not much changes from trip to trip.  The biggest news a couple of years back was they were ripping out sidewalks and widening them.  My husband and I laughed at this because we haven't lived in those areas for almost 20 years now and we are definitely living in larger areas and faster moving areas now.  However...there is a certain comfort going back.  The first obviously is that our families live there.  It is nice to see all of our nieces and nephews together.  My children have so much fun and are so sad to leave them.  They look forward to our visits "back home" as much as they do Santa coming to their house.  They tell everyone they see for days, sometimes weeks that they are getting to see their families.  It makes me sad sometimes that they don't get to see them more often but they definitely make up for it when they are there.  They squeeze every minute they can with their relatives....hence why I only had 9 hours of sleep in two days!  We are lucky in the fact that both families live 30 minutes from one another so we can feasibly visit with both families in a weekend.  Not a lot of time with each family but we make the most of it.

Friday we met my new niece and the kids' new cousin (and what a cutie she is). We have been working with Hailey and being "gentle", "baby", "kissing baby's forehead".  She didn't do too bad.  Hailey showed off her new army crawl, clapping, and "so big".  She gave everyone big, fat, slobbery kisses!

Cousin sleepovers at Mamaw's are the best!

Saturday, we went to my favorite Chinese restaurant (we have lived in our city for over 5 years and have yet to find one that we love) and then the kids roller skated.  My oldest was quite apprehensive at first, but I'm very proud of him.  He was "skating" by the end by himself with a little support from the outer wall.  After that, we headed to my husband's parent's house.  They were all anxious to see the one really wants to see my husband and I...I think they would be okay if we just dropped of the 3 little ones :-)  We had dinner from my favorite Mexican restaurant.  I visited with my in-laws (mother, father, sister, and brother-in-laws) while the boys did their thing with the cousins.  I love when they get is like they are never apart.  There are the occasional squabbles but when you have that many children together...there generally is.  Hailey showed off there too.

Hailey was obsessed with her girl cousins at both Mamaw's

Taking a break

Getting spoiled

Overcoming his fears

Oh how I LOVE this smile!

Getting a little braver

Another cousin sleepover!

Sunday morning, we had brunch and then attended my niece's basketball scrimmage.  That is what I probably miss the most.  I would love to see them participate in their activities.  Unfortunately, with 3 children with their own activities, I miss most of their stuff.  Thank goodness for video cameras and now FaceTime on our iPad.  Sunday quickly came to an end and it was time to drive back home.  All 3 were wiped.  2 out of the 3 slept part of the way.  Little Miss Hailey actually did not cry while she was awake...we have made progress!

I wish I could have taken pictures of our drive home.  It is neat to see some of the "sights" along the way.  I love the names of some of the Mom and Pop restaurants and stores.  We pass a casket company and a distillery.  We saw a lot of cornfields under water this trip with the flooding we had last week.  Lots of hills, trees, livestock and this trip police along the way.  I almost think you have to be from the Midwest to appreciate it sometimes.  I think people living in larger cities just "don't get it".  I'm not sure my children will understand how life was growing up.  We didn't have the opportunities they have.  We didn't "do" all the stuff they get to do.  Even shopping was an ordeal because the distance you had to drive.  It was an all day affair.

The sun setting and making the shadows longer

My "patient" travelers (yes, I was at a stop light).

I found this on Facebook this evening.  It is a group called "You Know You're from **** County When..."  Some of these might give you a glimpse into how/where I grew up....they are kind of funny (but oh so true).
  • When more than half the kids are out of school because of deer season.
  • You give directions by "landmarks"...turn right at the red barn...go straight past the big yellow house where such and such lives
  • A church's big fundraiser every year is a "shooting" match
  • Everyone waves at everyone
  • Your grandma sat outside when the weather was nice and could tell you who drove up and down the road for the last 8 hours and somehow either knew where they were coming from or where they were going
  • You have some of the same teachers your parents had in school.
  • You went "tick-tacking" at least once in your life
  • Most summer jobs were "putting up hay"
  • You don't worry about hitting other cars on the way home, you worry about hitting a deer
  • You know how to play euchre and probably learned shortly after you learned to walk
  • Parties by a lake or a pond is a common occurrence
  • Most towns did not have traffic were lucky if they had a stop sign
  • You have wrestled a hog, or if you haven't then you have watched and wanted to deep in your heart...
  • You know EVERYONE you went to school with and probably still remember them 20 years later  
Sorry to go off on that tangent, but they are funny!  We are safe and back home.  I think everyone has recovered.  We are back to our routines. games.  We love where we live now (I wish we could move our families closer) but it is nice to be able to spend time with our families, if only for a couple of days.  

No matter where we are traveling from...this is always a sight we love to see!!!

January is closing in the next few hours and on to February we go.  My precious, healthy little girl will be turning one in 26 just doesn't seem possible.  Her first birthday means more than I ever thought a day could.  It is so much more than a birthday.  I'll write more about that this week.  We are gearing up for follow up appointments over the next few weeks.  We start tomorrow with audiology again.  Crossing my fingers for decent news or something other than "inconclusive".  

I hope everyone had a fabulous weekend!  We are having very mild weather here still and it was great to get the kids outside and to travel without worrying about snow or ice!

My tired little traveler

Still tired the next day


Thursday, January 26, 2012

Happy 11 Months, Hailey!

Happy 11 months, little Miss Hailey!  Hard to believe the journey we have been on to get this far.  Some days it seems like it has been years and other times it seems like it has only been days.  Your beautiful smile makes our day and lights a room!  Your personality is showing more every day (and your vocals are louder every day!)  So happy to have you in our lives.  We are so incredibly lucky!

Love you more today than yesterday!

Right before she did a nose-dive into her kitchen

Wednesday, January 25, 2012

The world looks different

Yesterday's blog was freeing...liberating...even a little embarrassing.  It's hard to admit some of the feelings that you feel when going through a life-changing event.  It is hard to admit some of them even to myself.  It is difficult baring your soul to people you know and people you don't know.  It makes you an open wound without a band-aid.  You wonder what people think and you wonder if they are going to judge.  I  had to put them on all paper to get them out (honestly, I would have had a harder time saying them out loud to anyone....there they may be able to hang in the they can eventually get "lost" in cyberspace!).  At the time, I thought those feelings were awful, that I should be ashamed of them, that there was something wrong with me.  Now, thanks to all the wonderful other moms in the DS community, I know that it was totally normal and okay.  That alone helped me move forward.

Now that those feelings have been officially filed away (not forever, of course, they have a tendency to creep back up when you are least expecting them but nothing like the first time around).  I think it is time to share how those feelings have evolved and what they are now.  My feelings really aren't much different than the emotions of moms with typical children.

I'm not going to lie...I am over my anger with God.  I know that "everything happens for a reason" and "God only gives us what we can handle" but there are still days that I question God.  It is crazy to see the long list of "things" that one extra chromosome can affect in such a tiny body.  It is frustrating at times.  I hate that it takes  Hailey so long to "get" motor functions or cognitive skills that come so easy to other children.  I hate that we have to teach her every step of a process.  That it can take her months to learn something that a typical child can master overnight.  It drives me batty that she has smaller ear canals that can fill with fluid...that can affect her hearing...that can affect her learning and her ability to communicate with others.  The extra chromosome can affect how long it takes for her to get teeth and when they do start to appear, they don't generally come in the same order as a typical child.  It is frustrating knowing that most of the things we take for granted every day, will come harder for Hailey to accomplish.

There are not enough words in the dictionary to truly explain how much I love this little girl or how much I admire her.  She is the absolutely strongest person I know...yes, at only 11 months old.  She's a fighter, she is determined, strong-willed and funny.  She believes she is a comedian and knows exactly the things that drive her mommy crazy.  I know this because as soon as she removes her left sock, she looks for me and smiles from ear to ear.  She is now sitting up by doing the splits...a major PT no-no.  She knows she isn't supposed to do it because she searches for me when she sits up this way and I redirect her to do it properly.

Would I want to "cure" her DS?  Nope...there is no way to change that without changing who she is.  Without DS, she wouldn't have those beautiful almond shaped eyes.   She probably would not still be the cuddler that she is.  We wouldn't celebrate every achievement she makes like she has won the Nobel Peace prize.  Other families would think we were nuts if they watched us celebrate her "trying to" patty cake or army crawling.  These are all huge accomplishments in our family because she has worked sooooo hard for each one of them.  I wish there would be progress in research to assist with some of her cognitive function.  I keep praying there is a breakthrough but I don't want to "take away DS" because that is part of who she is....just like Brayden is good at math and is a people person...just like Ian is left-handed and quick-witted.

Am I still scared?  Yes...but for different reasons.  I still worry about how people will perceive her.  I worry about her having friends.  I worry about other children making fun of her.  I worry about her feeling like she is different and not "enough".  To overcome this, I try not to worry too far into the future...another thing I can't control (and everyone knows how I like to control things).  I try to educate everyone that Hailey is more alike their typical children than she is different.  She loves feeding herself, she loves loud noisy toys, she loves her brothers, she knows exactly what she isn't "supposed" to have...ipods, the boys video games, legos, etc.  She loves to throw her toys on the floor repeatedly to see how many times we will pick them up.  Hopefully, my child and other children with DS can help break some of the barriers that still exist for them.  I know she has changed the opinions of a lot of people in a short amount of time by doing nothing but being herself.  It was effortless.  Aren't we all scared for our children and what the future holds for them?

Am I still jealous...yes and no.  There are still times that I get down when another child her age or even younger accomplishes something that Hailey is working so hard to achieve.  There are no two children that learn or develop at the same time.  So why do we compare?  We all do it, but why?

I don't get as annoyed when people tell me how "special" Hailey is or that we are the "perfect" family for her.  There is no ill-will or malice behind their words.  Their hearts are in the right place.

I still get me a mom that doesn't and you might very well be looking at a saint!  I do get frustrated when Hailey doesn't "get" something after repeatedly working with her.  I have given up drinking with a straw for a couple of weeks but it is driving me crazy.  I was frustrated when my oldest wouldn't ride a bike without training wheels.  I was frustrated when my middle child was a biter.  I get frustrated dealing with insurance and the medical appointments.  I don't like arguing why this or that was necessary and not elective. 

Am I embarrassed by the way Hailey looks...not by a long shot.  Have you seen how many pictures I post of my children...ha!  Do I weed through them to find the best one...yes....but I do with the boys to...I definitely do when it comes to mine.  Heck, if I could figure how to airbrush part of my body out, I would alter every picture of myself!

Do I feel lost...not by a long shot.  I am playing the role I was born to play.  I was born to be the mother of these three beautiful children...through all the ups and downs that life throws our way.  I am right where I should be.

This will sound crazy to most people but I think anyone who has a child with DS will understand it.  Most of the time in our daily life, we don't "see" Down syndrome.  That isn't all of is just part of her.  It is in the background like Ian is left handed.  It's hard to believe that it was so much the center of our world when we first found the center of a circle.  Now it just sits out in the perimeter with everything else.

I consider our family extremely lucky.  There are many mothers who have lost children before they are born.  They would have given anything to have 5 minutes with their child.  There are people who have lost children to accidents and cancer.  There are families that watch their children suffer in pain from diseases that have no cure.   My daughter doesn't suffer.  She is healthy.  I pray for those families...I can't imagine their pain.

Yes, this little girl is special...but so are her are my friends' children...all children.  I am looking forward to her first birthday.  I will always hate that her birth was overshadowed by so much pain and hurt.  I look forward to celebrating on her birthday, everything that she is!

Look how excited she is to see a pic of her new cousin!

 There she goes with the left sock again!

 Mom, I'm so sleepy.  Maybe this would be a good book.

 The girl doing her two favorite things...eating and talking!

I love bath time!!!

Hailey's newest frustration...she's not fond of wearing shoes.

Tuesday, January 24, 2012

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" if that makes the world 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 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 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 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 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 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 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 tubes!

Life is good!

Pushed aside, but oh so real

As most of you know, Hailey's first birthday is rapidly approaching.  It will be here in a few days over a month.  Many days, I ask myself, where has the time gone?  Other times, I, it has only been a year!  I know I am the same person I was last February when my precious little girl was born.  But I'm not the same person Talking in circles, I know. 

To say that Hailey's birth was emotional is quite an understatement.  I thought a year would make some of the emotions surrounding her diagnosis disappear.  Nope, I still remember them.  I don't carry them with me the way I wore them those first few months.  They have been pushed aside and filed away.  They are a little duller but some of them resurface from time to time.  Some days they can even put me into a full cry session.  Some of the emotions have evolved or changed. 

I might bore people with the next few blog posts as I revisit those feelings as I work on closing the chapter of Hailey's first year look forward to starting a new one!

I would start with the first one tonight but my eyes can't stay open long enough to type!!

In looking at this is hard to believe some of those feelings every existed!  Please ignore the prunes and Mexican food that adorns her face in these!