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.

Bloom...finally finished

This afternoon, while Hailey was tucked into her crib and my middle guy was playing outside with friends, I finally sat down and finished reading "Bloom" by Kelle Hampton.  I purchased the book back in April when it first hit the shelves but hadn't brought myself to read it because I wasn't sure I was ready to relive the feelings of receiving a diagnosis of Down syndrome.  I just waded through that muck 3 short months ago when Hailey turned one and I'm positive I will filter through more as we approach Hailey's 1st heart day anniversary.  Before I give my thoughts that follow reading the book, let me give a little background into Kelle to those who do not know of her.

Kelle Hampton has a beautiful little girl, Nella, who was born a little over two years ago.  She also received a birth diagnosis.  Kelle has a blog, Enjoying the Small Things.  Kelle's blog is about her life.  There are some references to Down syndrome but I think overall, there isn't much.  She is a fabulous photographer.  I was introduced to Kelle's blog when I needed it the most.  Hailey had been diagnosed, we were wading through the sea of terms and medical conditions, and nervously awaiting the date for Hailey's heart surgery.  I thought life was like a movie and our DVD was stuck on pause.  I felt that life wasn't going to go on for us and that Down syndrome and a heart defect was going to define who we were as a family.  I thought being happy or being normal wasn't going to exist.  Kelle's is very unicorn and rainbows.  There are times I wish I could be a little more like that.  Her blog was the first I was introduced to...I had never read a blog before hers.  Through her blog and the many wonderful others I found after, I realized that all my fears were just fears and not reality.

Okay...so...what did I think of "Bloom"?  It was written similar to the blog page she has about Nella's birth.  She is honest.  She admits it isn't what she wanted...or what she thought she wanted.  I think this book would be good for any new parent just receiving a diagnosis.  I think a lot of new parents need to know that they aren't they only ones that have these feelings.  That it is okay to mourn the baby you "thought" you were having...that it okay to lean on others and voice her fears...your heartache.  To know there are so many people that do understand what you are going through and you are not alone.  Did I reach acceptance as quickly as Kelle did?  Nope, not by a long shot.  We did, however, have the added stress of a 3 week NICU stay and the unknown of a heart defect.  I put dealing with Down syndrome on the back burner for a little while because we feared for our daughter's life.  It made my mourning period longer...but everyone deals with those emotions differently.   She was honest and open about how things creeped up along the way even when she thought the emotion and rawness of it all was long gone.  I definitely related to that.

It reminded me how grateful I am for our "net"...our family and friends that were there to help us in ways we didn't even realize at the time.  How they kept us from falling when the bottom fell out of our world and how they are with us as we made it to the other side.  They love our little girl (all our children) unconditionally and see them for the individuals they are.  

I think her book made me reflect on our first year with Hailey.  For instance, I know how I reacted to the news that Hailey has Down syndrome and how the family and friends that were at the hospital reacted but I never thought about asking how friends who weren't there reacted to the news.  How they felt about everything.  So I've started asking a little about that.  I know one of my sister-in-laws had a hunch before the doctor told us.  One of my friends was more concerned for Hailey's health (on cpap, feeding tube, heart defect) than Down syndrome, and another friend knew that we would step into the role of being Hailey's parents perfectly.  I have a couple more friends that I want to discuss it with but the timing has to be just right.

There are a few things in the book that I thought, "really" after I read it but then I remembered this book is a memoir.  It is her account of what happened in her life.  This is not a book of fiction with made up characters and a pretend story-line.  I'm not in a position to judge how someone handles earth-shattering news (or anything for that matter).

I am happy that Kelle has found a way to bring Down syndrome into the spotlight and show others that Down syndrome is something to celebrate and for most of us it is just a small part of our lives.

These pictures have absolutely nothing to do with the book...unless Hailey is practicing her writing skills for when she publishes her own book :-)