What Do You See?

After Hailey was born and we were told she has Down syndrome, I suddenly saw all of the physical markers.  I saw the almond shaped eyes, the teeny nose with small nasal bone, and felt the low muscle tone.  For a long time, I didn't truly see Hailey as a person, I saw Down syndrome.  I wondered if there would ever be a time that I would "see" Hailey.  Would I always see Down syndrome?  Why couldn't I see my daughter?  She was mine...part me and part my husband.  Down syndrome didn't define her, it was just part of her, but I couldn't get past the physical features that you could see.  I was frustrated, sad, and felt incredibly guilty.

To all those parents who are having a difficult time dealing with their diagnoses...for the person I was...this is for you.  Two years and two months later, I don't see Down syndrome (and I haven't for a long time).  Down syndrome doesn't rule our life.  Yes, I do write about Down syndrome, but they are thoughts that pop into my mind or things we run into in our daily life.  We don't eat, breathe, sleep Ds.  Who knows, if one of the kids had any other condition, I might blog about that, too.  I'd blog about issues the boys have, but most people don't find sassiness, teacher struggles, children squabbles, or every day athletics as interesting.  Yes, we belong to groups that originally centered around Ds, but these women and families are great people who are fun to be around.  I look forward to getting together with them.  Our daily life, only deals with Ds in the sense that it is a part of Hailey.

So I ask....do you see the same things I see?

A funny two-year old who loves and nurtures her babies...

 Who loves the camera...

Who loves to make a mess to drive her mama mad...

Who makes car noises with her Little Mermaid shell....

Who is now acting more like a big girl than a baby....

Who loves technology....

Who thinks her brothers hung the moon....

Who loves books more than any of my three children...

Who loves to help....

Whose dimpled smile can make anyone's day brighter....

Who loves her food...the messier the better... 

Who has these 3 boys wrapped around her little finger...

Who fits here perfectly....

Who loves to dance....

Who loves exploring her world...

Who recently learned to sign "I love you" because the words just don't come out yet... 

Who is making our world a better place just because she is here...

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 :-)

Family Affair

I know that most of families with children with Down syndrome constantly say, "Treat our children all the same.  Don't treat them differently.  Children with Down syndrome are more alike typical children than they are different."  Yes, I truly believe this and I do not want Hailey to receive different treatment or have different expectations because she has Down syndrome.

With that being said, the American Society of Human Genetics showed an abstract (#1867F) at their annual meeting last month that the 400,000 number we have been quoting about the number of people living in the United States may be inaccurate.  It breaks my heart to read that they think the number is 240,500.  Only 240,000 people with Down syndrome living in the United States.  That is almost half of the original number.  One day, my daughter will realize that she is a little different (yes, we teach our children that everyone is different), but I hope you understand what I mean.  She does have facial features that are a little different...her lack of nasal bone, shorter stature, almond shaped eyes.  She will realize that it does take her longer to learn things.  Some things just won't come as easy for her.  I don't ever want my daughter to feel that she doesn't belong.  That is one reason why I find it so important for her to have a variety of friends.  I want her to have friends with Down syndrome and without.  I feel it is important for her.  We have made a commitment as a family to attend functions with our local Down syndrome association.  It is no different than us going to soccer games for the boys or their school programs.

Last Sunday was a our annual Christmas party with the DSAGC.  The boys look forward to it.  They love going and I was in a much better frame of mind this year.  Last year, Ds was still new (yes, Hailey was almost a year old).  We had come a long way, but we still had a long way to go with acceptance and coping.  Hailey had rocked her open heart surgery and was thriving, but it was the first large event I had attended and I didn't know anyone.  It was overwhelming.  It was inspiring.  This year was different.  It was just a family activity.  The boys made crafts.  We enjoyed a nice meal.  We talked with friends we've made over the past 2 years.  The kids all got to see Santa.  Unlike most toddlers, Hailey loved Santa and cried when we took her OFF of his lap!  It is my favorite Santa picture of all!  It was a fabulous event and I look forward to next years already!

Why yes, we "need" to remove our shoes and our socks. 

Not quite sure what to think of Mrs. Claus

Poor Santa barely fit in this shot

This might be my fave pic with Santa ever!

Faith & DS

This is a post that was originally written during October 2011 challenge.  Check out other posts or join the Summer Disability Blog Hop here.

I will be honest.  There have been a few times through my life when I have really questioned God...I've asked "why", "why me"...I've even been mad at God.  My mom passed away when I was 5 years old.  I don't remember it much but I do remember questioning things as I got older.  During different milestones in my life, I was mad that she was "taken away" from me.  My dad remarried and I was fortunate to have a fabulous step-mom (I've called her Mom from day 1).  I was upset that I couldn't have questions like where did I get this habit, where did I get my horrible singing voice from answered?  I felt cheated.

Fast-forwarded 12 years, I was in a serious relationship for a year in high school and the young man died in a single car accident.  I questioned God again...I was mad.  I was older so I felt the pain more.  I had more anger.  I felt cheated again.

That brings us to almost 20 years later.  My sweet precious little girl was born.  She was taken to the NICU shortly after birth because she was turning blue.  It seemed like so much time had passed.  The doctor and my husband returned to "break the news" to me.  My daughter has Down syndrome and could possibly have a heart defect.  That night was rough.  I did a lot of talking to God that night.  I questioned him..."why me", "why Hailey", "why not the woman in the room next to me", "how can you do this to any child"?  I cried.  I was hurt, I was mad.  Then I started bargaining with God.  "If you make sure Hailey doesn't have DS, I'll volunteer more, I'll go to church more, I'll donate to the church more, etc.  At that moment, I would have done anything to change the outcome of her genetic testing.

A few days later, after the shock wore off, I dropped an email to a former priest from when I was growing up.  He knows me and my family and has for over 20 years.  I pulled no punches in my email.  I listed every question and every angry thought I had.  We emailed back and forth over the next few weeks.  I found peace in every response I received.  He made me realize it is okay to question God.  I never stopped believing in God.  My faith remained strong.

Once I was able to spend more time with Hailey, hold her, feed her, stare at her...I realized how grateful I was that God gave me this beautiful child to care for, love and learn from.  I truly believe that God chose us for a reason.  I have learned a lot about myself, as a person and as a mom.  I know I've already learned many valuable life lessons since Hailey was born.  I know that I have many more to learn from her.   I believe Hailey has a lot to teach others around her.  I feel privileged and honored that God entrusted us with Hailey (and also our boys).

My faith in God has not waivered through this adventure.  If anything, it has gotten stronger.  I do get annoyed every now and then and say "Seriously, God...don't children with DS have enough?".  "Did you have to have soooo much in their little bodies affected by that extra chromosome?"

My priest said shortly after Hailey was born, "Individuals with Down syndrome seem to view the world the God intended it to be seen."  I think this is true.  I also believe, having a person with Down syndrome in your life, helps you to view the world in a different light.  I believe my daughter is going to WOW everyone...she is going to do great things.

Look how little 6 month Hailey looks!  She still makes funny faces though :-)