2nd So Different than the 1st

This might sound peculiar, but Hailey's 2nd birthday is so different than her first.  The first year was so much about fear, survival, sadness, the unknown, and exhaustion.  Having basically every aspect of your world turned upside down.  Hailey being diagnosed with Down syndrome wasn't what we "expected" or "planned".  It wasn't "our dream" for our 3rd child.  Our only daughter.  Just with Ds, we were thrown into a facet of life that we were never a part of before.  I felt like a needed a dictionary just for the new terminology that was thrown around from day one....hypotonia (low muscle tone), palmar creases, EI (early initiative), IFSP (individual family service plan), physical therapies, etc.  Then add to it, eating and breathing issues she had to overcome to just graduate the NICU to come home to her brothers.  The NICU was a new experience for us, as well.  There was March 17...the day our little one came home.  The second time my world had stopped in 3 weeks.  The day we found out that she had a congenital heart defect and would definitely need open heart surgery in a few months.  Having someone tell you to watch for the signs of congestive heart failure in your 3 week old, makes you fear sleeping.  What if something happens in the night?  What if I miss something?  Following that was other specialists that we started seeing regularly...audiologists, ophthalmologists, physical therapists, developmental pediatrician, occupational therapists and speech therapists.  We were fortunate with Hailey...her list is relatively short compared to some children with Ds.  Added to that was the pressure I put on myself to try to nurse Hailey.  It didn't work so I made myself pump for 6 months.  Every 3 hours for 6 long months.  I gave myself one heck of a guilt trip after 6 months when I physically and mentally couldn't go on any longer and quit.  Her hospital visit for OHS was short...we were only there 3 1/2 days but I think I aged 30 years that week. 

When Hailey's first birthday arrived, we were so happy.  We made it.  We survived!  Don't get me wrong, it was not a miserable year.  We had a lot of good times that year also, but it can be a challenge to overcome so much all at once.  To adapt.  We had a huge bash for Hailey's birthday last year.  We celebrated with family and friends that were on the journey with us.  It was a celebration for them as well.  We had all learned so much that year and we were so proud and in love with Hailey. 

This last year has been different.  I didn't dread her birthday this year.  I didn't get the huge emotional wave that I did on her first birthday.  The memories are still quite vivid.  I can almost replay every minute of her birth and first day, but the rawness doesn't exist.  This year has been fun.  More and more of Hailey's personality has emerged.  We are getting a true glimpse of who Hailey is.  In her mannerisms, her play, her interaction with people.   I have been truly excited for today.  So excited that my little girl has turned 2!

So what does Hailey do on her 2nd birthday?  Not a lot.  Everything is much lower key this year!  She had swim lessons this morning with big brother.  She is napping now with Daddy.  This evening she will have a huge plate of spaghetti with tomato sauce (one of her favorite foods...just make sure you have time to give her a bath afterwards).  She will finish the night off with cake and presents with mom, dad, and her two brothers.  She'll spend today like most of her days....laughing a lot, sharing loads of kisses and making as many messes as humanly possible!

Here's to celebrating 2!  I love you more than you will ever know baby girl!

Having a lengthy conversation with Papaw on her play phone.

Putting her baby down for a nap...complete with blanket that she covered the baby's head with.

She seems quite happy that she has full control of the remote control.

Wanting Others to See the Now

I started looking at the statistics of my blog posts trying to figure out what to write and what people read the most.  My most popular blog post of all time was about Hailey's speech and physical therapy sessions...you can read it here.  The next one was about the r-word and explaining Down syndrome to your child.  As with most important topics, it is very important for your children to learn facts from parents, teachers and adults than to listen to hearsay from their peers.  You can read about that here.

The next two were part of a blog hop.  Both of them are very dear to my heart.  #3 was my favorite post..."Normal Life".  I wrote it in April of last year.  A full year after Hailey was born...almost a year ago now.  #4 was about preconceived ideas.  These two posts are ones that I want all new moms to read.  All moms that receive a prenatal diagnosis to read.  People who don't know anyone with Down syndrome and people who have just found out that a friend or family member is having (or did have) a baby with Down syndrome. 

The weight of the news that Hailey had Down syndrome made it hard to breathe...made it hard to think...made me question everything that I ever believed or thought I knew, but it was temporary.  It was like fog when the air and the land are two different temperatures.  You know, the thick fog that you can't see through...so thick that you feel like you are wearing the fog.  The fog lifts a few hours into the day and everything is clearer.  You can see and you can't feel it anymore.  Just like the fog, my tears cleared, my thoughts settled, my questions subsided.  I could see my daughter.  Not the Down syndrome.  I could see the little girl with light brown hair, blue eyes and chubby dimpled cheeks.  As time passed, I saw that Down syndrome is just a part of her...it doesn't define who she is.  She is determined, energetic, hard-working, loving, funny, social, mischievous, smart, sometimes sneaky, loud, chatty...some of those traits she shares with her brothers, a couple she owns all by herself. 

Yes, I want all parents and families to understand that it is okay to be sad.  It is okay to mourn the baby that you "dreamed of".  It is okay to cry.  It is okay to be angry.  Let yourself feel these things.  It doesn't make you a bad parent, friend or relative.  You need to get those feelings out to make room for more.  More pride than you've ever felt.  More love (for everyone) than you've ever imagined.  More laughter than you've ever heard.  More joy than you've ever known possible.  It is coming...give it time and let go of the other stuff so there is room for it! 

I try to explain Hailey and it is difficult.  People have to meet her to understand.  She smiles with her entire body....she laughs with her whole body...she loves with her whole heart.  I know I've said it before, but she truly completes our family.  She's a perfect fit.  A friend recently commented that she doesn't know how anyone can ever be mad in our house with Hailey in it.  I have to be honest....it is almost impossible!  Her giggles stop us in our tracks.  Her smile causes a chain reaction of smiles through the house. 

I'm glad that others have read the difficulties surrounding Hailey's birth, but I also want them to know the joy we have in our lives.  I want them to read about how your life will be "normal" again and quite possibly better than ever!!!  I hope that you will share this information, too!

These pictures are just a few of Hailey & her every day life (I don't have many of her walking yet...I am generally too busy cheering for her!  She is getting there.)......

I never knew climbing on the couch could make someone so happy!

Finally enjoying the giggling baby.

She's starting to look like such a big girl!

Playing peek-a-boo barn.

Signing "mouse"

Mom took away my plate because I was throwing food...now I will just pout until she gives it back.

Never fails, Hailey always has at least one sleeping picture a week :-)

"Normal" life

I have been absolutely horrible keeping up with my blog in the past few weeks and I have absolutely no excuse...none!

Once a month, I meet up with local moms from our DS association.  Our association is so large that we have to break up into smaller groups for some activities.  I love Moms Night Out.  I was so incredibly nervous the first time I joined them for dinner.  I felt like I was a new student at a new school.  Of course, I enjoyed myself.  I think Hailey is one of the younger babies in the group.  Some of the children are in preschool or in the early years of elementary school.  These moms have been there, done that.  They've been on this journey longer than me and I trust their advice.  More than one of them over the past 6 or 7 months have told me that the first year is challenging and it will get better.  I listened to them but I'm not sure I truly believed them until recently.

Webster's defines "normal" as "a form or state regarded as the norm (standard)".  It is a perception....it is left up to interpretation.  What one person's normal is not the norm for another person.  I don't even like using the word "normal" but it seems to be a word that most people can relate to and it is quite over-used.   "Normal" to me is living life day-to-day with my family and friends.  It is watching my boys go to school, play soccer, spend time with their friends, and pushing the limits as they gain independence and turn into young men (one day...I don't want it happening too soon!).  It is watching my little girl overcome the obstacles that are put in front of her.  It is breathing easier because her heart is fixed...it is dealing with her diagnosis of Down syndrome but not letting it define her.  It had caused some of her obstacles and will continue to do so.  It doesn't consume every thought, but yes, it will always be a part of our lives.  We accept her diagnosis, but we don't use the word "can't".  There is nothing we are telling her she can't do.  In fact, we plan on pushing her to overcome her obstacles and to become the best person she can be.  "Normal" is having dinners outside on the patio with the kids, it is playing kickball in the backyard with the boys, it is watching Hailey observe the world around her and watching her try to figure out how to get into stuff (especially if it is not for toddler consumption or suitable for toddler play).  Our normal is watching our children enjoy living and become individuals. 

Today, I was talking about "normal" and my lack of blogging recently.  She looked at me and said, "What a relief for everyone.  Normal is what we all prayed for after Hailey was born."  Some people (more than likely, those outside of the world of DS, heart defects, or special needs) wouldn't understand why "normal" is such a big deal.  A year ago, I was still reeling from Hailey's Down syndrome diagnosis and that of her heart defect.  We were struggling with each bottle.  Praying that she would actually finish the entire bottle and do it in under an hour.  Praying with each doctor's appointment that she would gain weight.  Praying each minute of the day that her heart would keep working hard enough to keep her alive.  Praying each night that we would all see tomorrow.  We lived in constant fear of the unknown and of the future.  We hadn't learned much about DS and we were terrified of her impeding open heart surgery and we didn't want all of that to dominate the boys' life.  We walked through life going through the motions.

Sometime after her open heart surgery, I woke up so to speak.  I'm not going through the motions anymore.  We are living life.  I will admit though...my normal is a little different than it once was.  We do have a few more doctor appointments...therapy appointments that we hadn't had before...but more than that has changed.  We have changed.  We don't take life for granted anymore.  We see the world differently.  Things that we thought mattered before really have little significance.  We see people different...I see people as individuals..with thoughts, feelings, opinions...value.  Every life has value.  I don't judge as quickly or harshly...as I've said before, everyone has a story.

I don't know how long this "normal" will last but I know that I'm loving every minute of it and we will take the new "normal" in stride whenever it comes.

I guess the only thing these pics have in common with this post is this is what is normal now!

This boy loves everything!!

He is getting too big!

She has a new obsession with sitting while taking her bottle.

She is always after electronics!

My little #4 didn't have a chance against yellow #10!

Can you tell she LOVES food?!?!

This looks so very painful!  This is for all the readers who love the way Hailey falls asleep everywhere and anywhere!

My middle guy

This boy smiles through everything!

Look closely...she is asleep!  She was even snoring!

Happy weekend to everyone!