Dare to Dream

In the moments after we heard, "I believe your daughter has Down syndrome", a great deal of hopes and dreams vanished.  You have to remember, these were all based on very old "opinions" and ignorance.  I automatically assumed that Hailey would live with us forever and automatically assumed she would not attend college or have a career.  Without a doubt, I thought that was her future....living forever with my husband and I (which is fine if that is what happens).  Slowly over time, I realized that there are many adults with Ds living on their own, living with roommates, getting married and yes, attending college.  Most of the blogs I follow have little ones that are only 6 months to a couple of years older than Hailey.  They helped me tremendously because they helped me see that some of the issues we were struggling with were just phases and she would move onto something else.

Then last year, I started following a blog written by Gary (Margaret) Bender.  I was intrigued because her daughter, Alex, is a young adult with Down syndrome (you can read more about Alex's adventures here).  I will admit that in reading Gary's blog and through some of her comments on Facebook, she has frightened me about some of the issues of a teen with Down syndrome.  She has made me think about a part of life I had automatically shut out for Hailey.  Her daughter, Alex, voiced her opinion and her family listened!  Alex wanted to attend college like her siblings and that IS exactly what she is doing!!!  Alex traveled to Ohio (her parents live in Colorado) this week to attend orientation at the University of Cincinnati.  In the fall, Alex will live on campus while mom and dad stay in Colorado.  I don't know how many of you will ever understand what this means to me.  It absolutely frightens me to send my two boys away to college.  I can't in 100 million years dream of sending Hailey that far.  

From day 1, I've underestimated my daughter.  I've underestimated her drive, her persistence, her need to keep up with her brothers.  She has always surpassed every goal we have made for her with early intervention.  For example, last week, Hailey's homework was to add two words or two signs, she's added 5 (and they've all been spoken words...not signs!)  So why did I automatically remove so many dreams from her future.  I can't predict what will happen in 18-20 years with Hailey no more than I can with the boys.  But watching Gary and Alex live out a dream that I closed, has brought so many happy tears to my eyes.  It scares me and excites me at the same time.  I'm so excited to read about Alex's college adventures (as many as she will actually share with her mom...she is a college student, you know!)

I can't wait until Hailey gets older and starts to share her dreams with us.  Who knows where they will lead her?


Another new "skill" Hailey is working on....apparently clothes are now optional :-)

 

Truth, Tip & a Photo

It's a summer blog hop.  I love blog hops with a specific topic.   I like to see how different and alike my opinions about Down syndrome are with other moms. 

Truth:

People with Down syndrome are unique, individuals.  Just like you and I are different, Hailey is different from her friends.  She might share some common characteristics and struggles, but she is an individual with her own opinions, her own dreams, and her own personality.  Some struggle with gross motor issues, some struggle with speech, some have heart complications, some have vision issues, etc.  Not every child has all of the "textbook" issues that can come with the extra chromosome.

Tip:

Never underestimate an individual with Down syndrome.  My daughter has proved me wrong at every turn.  I underestimated her from the start and it was a huge mistake on my part.  I am certain there are very few things that my little girl will not be able to accomplish if she sets her mind to it.

Photo:

This is my daughter's latest "skill"...climbing on the kitchen table and yelling "mom" (to make sure I am aware that she is doing it!)

Check out what other bloggers have to share on this topic:  Truth, Tip & a Photo

A Few Words from Hailey

It's tough being child #3.  The boys are bigger...stronger...and so much faster.  I try as hard I can, but I just can't keep up with them.  They don't always want me around, but I've gotten good about squeezing my way between them to play.  I have a lot to say, but most of the time they don't hear me. They really love their games.  I have learned to get their attention by smacking them with a game controller or shoving one of my books in their faces.  I don't know why, but they get really mad when I do that.

I get ice cream when they celebrate something big :-)

Ian got rid of his training wheels!

Having two big brothers is fun sometimes, too.  They do teach me lots of things.  They taught me how to tell mom "No" and now I know "na-na-na-na" when I'm doing something I'm not supposed to do.  Mom wasn't too happy with this one.  It is a lot of fun though....I recommend everyone trying it!

They also teach me to do things for myself.  I really wanted the phone to call Daddy (he was traveling and I missed him) and mom had a big glass of water on the table.  I was thirsty.  Mommy was in the other room and I just couldn't wait.  I pushed out the chair and took matters into my own hands.   Mommy yelled "Hailey Dawn".  She had that look that meant I was in trouble, but I was just saving work for her.

Now I climb up there all the time just because I can

Don't I look good at the table.  Either mom and dad better get a bigger table or I'll take over one of the boys' chairs!

Mommy claims that my toddlerhood is giving her extra gray hair and raising her blood pressure....I think I'm just having fun!

Happy 2nd Heart Day!

Today, I sit and listen to Hailey trying to worm her way between her two brothers as they play a video game.  She chats away to both of them (who probably are unaware she is sitting between them unless she smacks them in the head with a book or extra gaming controller).  She is happy just being with them, being beside them.  In a few minutes, she will toddle back into the family room  to show me what goodies she is hoarding in her bucket or shopping cart.  I never dreamed of this day, I couldn't. 

Two years ago, we were waiting, pacing and crying while we waited for word from the operating room about Hailey's open heart surgery.  The repair that would enhance her life....the one that would prolong her life.  Hailey was showing early signs of heart failure.  It was surgery or lose her.  Even though the decision was a no brainer, we were frightened because as common as her surgery is, if something went wrong, we would lose her anyway.  I don't think I'll ever forget the way I felt as we pulled into Children's hospital at 6 a.m.  The halls so quiet as if everything was in a whisper state.  It was almost as if I could hear the clock ticking away the minutes in my ear...the countdown.  Hailey was in such a fabulous mood that morning.  I won't forget the feeling of standing at the entrance to her operating room.  The sights, the smells, my fear.  Handing her to the anesthesiologist, so terrified I wouldn't see her again.  The nurse putting his arm around me saying, "We'll care for her as if she is our own."  It all still brings tears to my eyes and a huge sigh in my chest.  Those memories will never go away and I'm not sure the feeling ever will either. 

It is often hard to believe looking at Hailey that she was ever sick or ever fighting for the energy to eat and breathe at the same time.  Hard to believe that we were worrying if we would lose her when she is so vibrant.

But I sometimes wonder, is it because of all of those events that life sometimes sweeter?  Milestones bigger?  Sunrises more promising?  Sunsets more spectacular?  Giggles more contagious?  We will never know.  It just part of our story...her story.  I do know that I never let myself dream of today.  Listening to my three "hanging" out.  Watching Hailey mother over her babies or dart through the kitchen with her shopping cart like she is missing a huge sale somewhere.  I never let myself dream of the sassy, funny, so full of life two year old that we have today. 

We don't worry about her heart anymore.  It is strong and it is healed.  Honestly, it's not a thought on the radar anymore.  Most of the time, we are too busy chasing her!  I will never forget this day and I will always thank God for medical advances, our very talented surgeon and dedicated medical team. 

Happy 2nd Heart-versary, Hailey!!!!

The night before OHS

Two days after

One year later

Today...two years later

Happy 4th - Throwback Thursday!

As we approach Hailey's heart-anniversary, I can't help but let my mind wonder back two years ago.  What it felt like on that 4th of July 2011.  How scared we were.  How sick Hailey really was.  I never let my mind wander to the place we are now.  I couldn't.  I didn't want the disappointment if those dreams didn't come true.  I think that is what makes all of this so awesome right now.

2011

2011

2012

2012

My firecrackers today

Never Knew

My friend, Meriah, posted this today, about not knowing she

wanted a child with Down syndrome until she had a child with 

Down syndrome. I remember reading that quote on a message 

board shortly after Hailey was born.  I rolled my eyes and 

sighed.  I didn't believe it and frankly didn't let myself 

believe it. I thought the moms that were bragging about 

their child with Down syndrome and so proudly showed pictures 

of their child were hiding something.  Putting up a brave 

front for the world to see.  Ha!  They don't have time for 

the charade :-)  Frankly, they don't need to fake anything.

It is all real.  All true.  All 100% pure love.  Pure 

admiration.  A friend recently pointed out the song, "Never 

Knew I Needed" from Disney's Princess & the Frog by Ne-Yo. 

Following are the lyrics.  You be the judge.

For the way you changed my plans
For being the perfect distraction
For the way you took the idea that I have
Of everything that I wanted to have
And made me see there was something missing, oh yeah

For the ending of my first begin
(Ooh, yeah yeah, ooh, yeah yeah)
And for the rare and unexpected friend
(Ooh, yeah yeah, ooh, yeah yeah)
For the way you're something that I'd never choose
But at the same time, something I don't wanna lose
And never wanna be without ever again

You're the best thing I never knew I needed
So when you were here I had no idea
You the best thing I never knew I needed
So now it's so clear, I need you here always

My accidental happily
(Ever after)
The way you smile and how you comfort me
(With your laughter)
I must admit you were not a part of my book
But now if you open it up and take a look
You're the beginning and the end of every chapter

You're the best thing I never knew I needed
So when you were here I had no idea
(When you were here)
You the best thing I never knew I needed
(That I needed)
So now it's so clear, I need you here always
(Now it's so clear)

Who knew that I could be
(Who knew that I could be)
So unexpectedly
(So unexpectedly)
Undeniably happier
Sitting with you right here, right here next to me
Girl, you're the best

You're the best thing I never knew I needed
(Said I needed)
So when you were here I had no idea
(When you were here)
(Said I had no idea)
You're the best thing I never knew I needed
(That I needed)
So now it's so clear I need you here always
(Now it's so clear)
(So clear, so clear, I need you always)

Now it's so clear, I need you here always

(Lyrics from metrolyrics.com)

Our world would never be the same without our little hurricane!

What a goof!

Hailey not only likes emptying the dishwasher...she likes helping with laundry, too!

Hard to believe how big she has gotten!!!