The Hailey Herald

The Hailey Herald

Friday, March 30, 2012

Sights & Sounds of Spring and Some Randomness....

There are a few given sights that Spring as arrived...

Spring blooms all around....

Warm weather clothes that show off chubby legs and arms...

 Spending hours outside and the fresh air causing a certain little girl to fall asleep anywhere and everywhere...
 Spring storms that leave beautiful rainbows and talk of pots of gold and treasure...

Skinned up knees and bruises all over the boys....
 (I decided to NOT include the pics of the runny noses and random tissues found through the house as a result to all the spring blooms and allergies :-)

We have been enjoying the weather.  The kids are having fun playing with their friends in the neighborhood.  There has been lots of bike riding, impromptu basketball games, walking, games full of imaginary characters and adventures, digging, exploring, soccer practices, and loads of landscaping work.  It has been making bedtimes difficult, lots of dirty laundry, a house full of chaos and some exhausted parents!  I love spring!  We all seem happier...we are enjoying the extra fresh air, extra friendly chats, and the sunshine.

I have neglected the blog recently...I've been in a funk (I'm now through it, but it lasted a little bit).  I think there was so much emotion with Hailey's birthday, her party, her follow-up cardio appointment, her EI evaluation, and her assessment at the Down syndrome clinic that I emotionally crashed after it all.  Hailey apparently did too...or it could be a growth spurt...or teething...who knows what hers was.  I was bummed...depressed.  Hailey had about 5-7 days were she wasn't herself.  She wasn't really that fussy...she was a little high maintenance but not sobbing.  More whiny than anything.  She stopped crawling on all 4s....she wasn't pulling to stand...she did absolutely NOTHING for her therapist...she basically sat staring at L for an hour.  I would read blogs of Hailey's other 1 yr old friends and they all were doing so much.  I know I shouldn't compare but it is impossible NOT to!  I was frustrated and sad and then started to worry.  I started to do the standard "I'm not doing enough"..."I'm missing something" routine that we all do from time to time.

I'm not sure what started the funk, but I did let it spiral faster and more than I should.  I know that all children learn at different rates, that children hit plateaus (everyone has a bad day or two)...I just let it get the best of me this time.  Fortunately, it was a short funk for both of us.  Like a light switch, Hailey is back to her old spunky, sometimes almost rotten little self!  She is back to 4 point crawling (as long as the item of desire is about 3 feet away...anything longer than that she army crawls because she can get there faster)...she is pulling to stand again...she has started saying "ni-ni-ni-ni" when it is close to nap time or when we are putting her to sleep at night...we have finally found a sippy cup that she will "attempt" to drink out of (avent 360) and not yell at us when we bring it to her...she has finally learned to release a toy or object when handing it to us.  Therapy this week went so much better than last week.  We actually got her to climb a few stairs (which she generally refuses).  Oh, and other big news....we now have a tooth!!!!

 I thought I would share a few pics of the cookie monster this week.  Brayden attempted to eat cookies and not share with his little sister.  As you can imagine, Little Miss Boss, would have none of that!

Ahhh...I succeeded!

Tired little boy with his new blanket and pillow from Mamaw.
 We are looking forward to a weekend filled with Easter egg hunts and soccer games. 

Tuesday, March 20, 2012

World Down Syndrome Day

March 21st...3/21 (3 copies of the 21st chromosome)...Down syndrome.  I've racked my brain for the past few weeks about how to and what to write about World Down Syndrome Day.  I've been hoping to come up with something profound to write to help make people understand how passionate a lot of us are about Down syndrome awareness and education.  I'm not as good of a writer as some of my fellow bloggers so I figured I will go with honesty and have it come straight from the heart.

I've been very frank about how I felt that day...February 26, 2011...the day my precious little girl torpedoed into the world.  She came into this world unexpectedly...early...and in a blaze.  There was no stopping her no matter how much I tried to convince her to slow things down.  She had things to do and people to see.  She had other plans than her mother did.  I wasn't ready...I wanted her to stay a little longer...I wanted her to be stronger...I wanted her to be bigger.  Well, let's say...she showed me then and there that she was head strong.  I wasn't too worried that she was too early so it crushed me when they had to take her to the NICU.

That was only the tip of the iceberg.  I don't think I will ever forget the look on my husband's face when he returned from the NICU with the neonatologist.  We have been through a lot over the last 19 years and that was not a look I had ever seen.  The doctor started with explaining her breathing issues...then he followed with "your daughter has physical characteristics that lead me to believe she has Down syndrome"...the rest of the evening is foggy.  I remember bits and was as if the world stopped.  My heart was broken.  God had punished us for something we weren't sure of.  Why wasn't it the woman in the next room?  Why wasn't it the woman at the grocery store?  Why not one of my friends?  One of my family members?  No, my thinking was not rational.  I was not myself.  I thought we had just been told the absolute worst news in the world.  I thought our "normal" life was over...I thought we would walk around with a giant scarlet letter on ourselves that would set us apart from the world.  For anyone who has a child with special needs...Down syndrome, cerebral palsy, autism, spina bifada, know these feelings in one way or know the pain, the grief, the acceptance and last but not least...the living after!

There are no words that will adequately explain or describe how wonderful this little girl is.  She is the strongest...the most beautiful...most stubborn...the absolutely most perfect daughter we could have ever been blessed with.  I'm not going to sugar coat things...the first year was hard.  We had a lot to learn.  Medical terms, hospital stays, fighting with insurance companies, learning about Early Intervention, researching what is best for our daughter (just like we would for our sons), therapies, heart defect, hearing tests, eye appointments, therapies, exercises, etc...a world we never knew existed.  One that was now part of our world.  It is not all of our world.

This has opened our eyes...for the better.  It has made us better people.  It has made us more aware.  We see more than that what is shown on the outside.  You know the old saying...Don't judge a book by it's cover.  It is more true now than ever.

Our life is now just as "normal" as the next family's.  We go away for the weekends, we go to church, we play outside with the neighbors, we go to dinner as a family, we go to the movies, we go to soccer practice, school functions, we take family vacations.  That hasn't changed because Hailey has Down syndrome.

Some people don't realize...Down syndrome is only a part of does not make up ALL of Hailey.  She is a daughter, a granddaughter, a great-granddaughter, a niece, a great niece, a friend....she is funny, stubborn, determined, curious, loving, motivated, strong....she has dimples, blue eyes, brown hair, cankles :-), chubby little arms, tiny feet, pink cheeks....oh yea, she does have an extra chromosome too.

I know that many people in the world, feel that people with Down syndrome do not have the same worth as "typical" children.  They aren't productive members of society...they are a money pit for society...they shouldn't be integrated into society.  I feel sorry for those groups...they don't know what they are missing.  Their lives are less because they don't let people with disabilities into their lives.  Their lives would be enriched if they would open their minds and their hearts.  I will continue to advocate for my daughter and the thousands of other people  like Hailey that rock that extra chromosome.  I will continue to try to educate others about how "capable" and how "worthy" they are.  I will continue to try to make the world a better place for Hailey and everyone else.

So please...tomorrow...3/ something extra.  Do something extra in honor Hailey...make a donation to the Down Syndrome Association...learn more about DS...stop and talk to someone with Down syndrome and actually listen to him or her...see them for more than their diagnosis.  Read one of the blogs on the blog list (here at Stubborn Little Miss or With a Little Moxie)....fall in love with some of the beautiful children there...share Hailey's blog...share DS information with someone.

Do it for her....Help make the world better for Hailey!  How can you ever say "No" to that face!?!?

Saturday, March 17, 2012

We've come a long way, baby!

St. Patrick's day.....leprechauns, shamrocks, gold coins, green eggs, green beer, green milkshakes, green clothes, Irish food, Irish pubs, green ketchup (saw that Burger King was doing this one!) and only in noodles for your Skyline chili...everyone acting like they have Irish heritage somewhere down the line.  All the things that people think of on St. Patrick's Day.....not me...not anymore.  I'm not sure I will ever look at St. Patrick's Day the same our family...we think of my middle child (his middle name is Patrick) but we also think of Hailey and March 17, 2011.

It was one of the best and one of the worst days of my life.  The nurses and doctor's in the NICU said it was close to taking Hailey home.  She was getting stronger...she was gaining was time for me to start watching the mandatory DVD's before they released her.  I had suddenly became very superstitious and I wouldn't watch them until the day before...I didn't want to jinx her homecoming.  I watched the movies but I also took home paperwork that scared me to the core.  It was directions and a map for Children's hospital.  They were releasing her but we couldn't go home to celebrate just yet...we had to go straight to Children's to have an echo done on her heart.

This is the little peanut the last night I left her at the hospital...I was so happy and so incredibly scared.

The night before, we spent the evening with the boys as we had the last couple of weeks.  They asked how Hailey was, we showed pics and then we asked how their day was.  They asked if she was coming home soon...we didn't answer.  We couldn't.  We knew she was leaving the NICU but that is all we knew.  There was so much unknown.  The neonatologist told us there was a slight change the cardiologist would send us straight to admission and she wouldn't come home that day.  As much as it broke my heart, I couldn't break the hearts of the two big brothers that wanted their family together...we couldn't disappoint them that way.

St. Patrick's Day, Brayden headed to school and Ian headed to our friend's house.  To them, it was a normal day...well the normal they knew now.  Jason and I drove to the hospital...nervous, butterflies in our stomachs.  We had the carseat installed in the car (I wouldn't do it until I knew she was coming home....I just couldn't set myself up for that disappointment).  We brought the NICU staff a "thank-you" cake and hugged them all.  They had seen us through some rough nights and days over the previous 3 weeks.  They watched us get over the shock of her diagnosis...they talked to us about experiences they have had.  They loved that little girl...they rocked her...they sang to her...they fought over her.  She was an easy baby.  She never cried...she wasn't critical.  She was just taking some time getting bigger and getting stronger.  We said our shed her tears.  These women were my support system...I now was in charge of this tiny thing without the monitors and nurses I had leaned on...depended on.

The drive to Children's hospital seemed long that was only 20 minutes away.  It seemed walking the green mile.  You see, I don't like the unknown....I don't like the uncontrollable...this was both.  We maneuvered ourselves and our tiny little pink bundle through the parking garage and the maze of buildings to the Heart Institute.  We checked in and then were called back.  It is a very on-time...stick to schedule group.  She was weighed, measured, EKG, pulse ox....we were now accustomed to this new vocabulary.  It was time for the echo.  I think that was a grueling 90 minutes....the fellow that conducted the echo did not speak good English and for working in a children's hospital, seemed very nervous about dealing with newborns.  My poor baby was only wearing a diaper and he didn't even cover the exposed parts of her body.  I'm surprised she didn't freeze!  We watched as he moved the wand around her chest and tapped the keyboard and watched the screen.  I didn't understand what the colors on the screen were so I tried not to look at it.  I tried to daydream but it didn't work.  He was finally finished...he stood up and left...not a word to either of us.  The nurses then moved us to a new room and we waited.  A few minutes later two doctors entered...another fellow and Hailey's cardiologist.  There wasn't much chit chat...they jumped right into it.  There was a diagram of a heart on a dry erase board.  "Your daughter does have a heart defect...we are quite certain it will need surgery to repair".  I was glad I was sitting....I sat there staring at Hailey.  How could it be?  Why her?  Hasn't she been through enough?  Won't she go through enough with just DS?  The questions raced through my mind like they had so many times in the past 19 days.  I have to admit, the fellow that was working that day was fabulous...he was confident, he was poised, he was personable.  I left there scared to death but reassured that they would fix it and she would be okay.  My husband took it worse.  He was more scared and more worried.  Don't get me wrong...I was worried...I was scared but I was calm.  I was more worried about taking her home and not seeing the signs of heart failure...I was worried at the moment about the in-between time...worried about waiting for her surgery.  When would it big would she be...will she be okay in the sick will she get before her surgery?

We headed home.  It was beautiful day and the boys were outside with their friends.  We went home...we celebrated  For the first time...we were a family of 5!  We were all home together!  It was the best feeling in the world.  We didn't tell them about DS and we didn't talk about her heart.  I didn't want to dampen the feelings of joy they had at that moment...we didn't have to be separated anymore.  All was well in our little world for the moment.

I didn't want to take away these smiles, just yet.

St. Patrick's Day last year was definitely bittersweet.  I wish I could go back and talk to myself tell myself that it would be okay.  She would rock that surgery!  She would get stronger...we would be okay.  To enjoy the moments in between then and her surgery.  Oh well....I can't go back.  We made it through it....but I will never forget it....

Look how far we've come....

That beautiful smile!

Mom, what's up with all this green?

You know...I'm not fond of the headbands!

Such good big brothers!

They still love this little girl!!!  Who needs luck of the Irish when I have these 3?

Thursday, March 15, 2012

Spring almost here

Hello's Hailey again.  I've taken over the blog tonight.  Mommy thinks she is getting sick so she is taking it easy.  Mommy said the weather in the Midwest is normally not like this in March so we need to enjoy it while it lasts because Mother Nature could change her mind.  I'm not sure what that means but okay...for now, it means we have lots of playtime outside. 

I've been driving around the cul-de-sac in my new pink car (until I fall asleep).  Apparently, I fell asleep and almost hit the steering wheel today.  Thank goodness mommy's friend picked me up while mommy got the stroller for me to nap.  Mommy was laughing too hard...I almost hit my head!

Big brother even pushes me around sometimes.
Mommy is excited.  All of her flowers started blooming...I guess that is a good thing.  I don't remember any of that from last year.

Mommy said that the nice weather makes the boys act a little crazy....we still aren't sure what big brother E was doing in the cabinet.  Mommy was surprised he still fits in it!
I didn't pay much attention to him....I was too busy enjoying my spaghetti.

Today, I had an evaluation with EI.  Mommy seemed to think it went okay.  They came up with new goals for the next six months.  Everyone was excited that I met all of the last ones.  I wasn't in the mood to do everything they asked me to do so I just made funny faces at them and gave my therapist L big hugs and kisses.  That seemed to make her happy but mommy seemed a little annoyed that I wasn't paying attention.  I decided to do some of it as soon as they left the house.  I can't show them everything at once.  They might get too excited!

After picking E up at school, mommy said we were heading to the park for a picnic.  E ate really fast to play on the playground.  He made new friends...he always does.

Mommy then said it was time to let me go on the swings.  She keeps showing me pics of all the other babies swinging and I was starting to get jealous, they look like they are having so much fun!  Mommy said my big brothers never liked the swings.  I don't know what was wrong with them.  It was so much fun...eventually!  At first it was different and I wasn't positive of it.  I wasn't in the mood for all the pictures so every time mommy put her camera down, I smiled really big because it was so much fun.  Here are a ton of them anyway...I think mommy is nuts sometimes!

Hope everyone else is having good weather and enjoying it!