The world I never knew...

I think living my life in suburbia with my two "healthy" boys driving my minivan to and from all of their activities, I was sheltered....I was in a bubble of sorts.  Yes, I knew of the world around me.  I watched the news, read the paper, cried through news stories of people with hardships, but none of that had touched me.

No....I am NOT saying Hailey having DS is one of those hardships.  I wasn't aware of the statistics in regards to the number of pregnancies terminated when DS is diagnosed prenatally.  9 out 10 are terminated.  That number hit me hard.  Granted, not all children are diagnosed prenatally.  There are a lot, like Hailey, that were diagnosed at birth.

There was something else that shocked me.  I wasn't aware of what was taking place in other countries with the children born there with a disability.  In many countries, children born with Down syndrome and a number of other disabilities are put into orphanages.  After several years, they "age" out and are moved into mental institutions.  These children are viewed as outcasts with no ability to learn or be functional members of society.  They are hidden away from the world in shame.

There is a fabulous organization,  Reese's Rainbow, that works to get these children adopted.  Many people are not in a position to adopt a child but can make a donation to change a child's life by helping adoptive families afford the costs of international adoption.  A wonderful blogger is on a mission this October (Down syndrome awareness month).  Patti, mom to adorable Lily, is asking everyone to donate $5 to help Artem find his family.   Her goal is for his grant to get to $10,000 by the end of October.  You can read about it here. His adoption grant is up to $8270!  I looked at pictures of Artem, then Lily and finally looked at the precious face of Hailey and had to donate myself.  You, too, can help Artem find a family!

I recently was told a story about a couple living in southern Ohio who came to the United States to attend school.  While they were in the US, they conceived a child.  Once the child was born, they found out he had Down syndrome.  Their student visas are now up and they are returning to their native country.  Unfortunately, the couple and their child will be disowned when they return.  They felt they felt they had no choice but to put their son up for adoption.  I can't imagine living in a country that wouldn't accept Hailey.  I can't imagine my family disowning me because my child has Down syndrome.  Fortunately, before they left the United States, parents were found for this precious little boy.

I honestly had never heard of Reece's Rainbow until a few months ago.   Having Hailey has made me so much aware of the world around us.  Every day life that I didn't see because it didn't affect me, I was uneducated and I was  unaware.  The United States has come a very long way with the way people with disabilities are treated but even we could work harder.  What happens in other countries, though, blows my mind. 

I pray that as Hailey grows up the United States (and the world) continue to move toward total inclusion not only in education but also in society.  That Hailey is seen as an equal and a valuable member of society.

Here are a few pics of Hailey "reading" her book "I Can, Can You?"  A wonderful board book filled with pictures of beautiful children who also have an additional chromosome.  

Rises to the task....

Strides have been made in the United States with programs for children with special needs.   Hailey has been receiving therapy through Help Me Grow (Ohio's early intervention agency) since she was 6 weeks old.  For the most part, we have therapy once a week, occasionally we will go two week between appointments.  I remember when we initially started, I wondered what type of therapy can a 6 week old possibly do?  Let me say, we are now 6 months down the road and WOW.  If I knew half of what I know now with the two boys, I would have had them much more advanced!  Well...maybe!  At the least, I now know things that could have avoided some frustrations when the boys were little.

In the beginning, therapy was focused on tummy time and head control.  Later we progressed to trunk strength, reaching, playing with toys, etc.  With the exception of her heart surgery and recovery, she has consistently stepped up to the challenges and made significant progress with each appointment.  I thought today was going to be one of those stagnant, plateau bumps in the road.  I told L when she came...nothing new.  We are still working on what we were last week and everything looks about the same.  So L started with her, I had to get Ian's lunch set up because he was "starving" after school.  I came back in the family room and L says, "I thought she wasn't any better and hadn't progressed."  What???  Well apparently, we have a little show-off in the house.  She sat longer, held her head higher, offered a ton of resistance in her core when on the exercise ball and on her knee, she rocked back and forth when on all fours.  Whose baby is this?  She's such a stinker!  The session was almost over and I remembered I wanted to show L how Hailey was in the exersaucer because she seemed to struggle with it the other day.  I lowered her down in it....she stood straight up and started playing with the attached toys.  Huh???  L looked at me puzzled, "What is the issue?  I'm not seeing it."  Well, nope, there wasn't.

I've been getting a lot of the credit for Hailey's progress.  Yes, I do help it...but by no means do I deserve the praise.  It's all her.  She is strong, she is determined, she is persistent (wow...she is so much like her brothers!)....She's my little rockstar!

Trying to encourage pivoting but big brother moved everything closer!

Working my core.

Yay...I caught myself!  No carpet face plant!

Look how good my kneeling is now, Mom!

21 things about Hailey....

1 - When she wants to kiss your cheek, she will reach her right hand out for your face and then plant a very wet kiss on your other cheek.  Absolutely makes my day!

2 - She likes every food we give her....she even tries to go for the ones we don't give her.  She loves blowing raspberries with a full mouth of green veggies!

3 - She has the tiniest feet of any of my children.

4 - She is Houdini....she has gotten out of swaddling blankets and even a pair of her pants once.

5- Hailey rolled over at an earlier age than either of her brothers.

6 - I'm going to jinx myself with this one....she has been sleeping through the night for a long time.  She probably would have when we first brought her home from the hospital if we didn't need to wake her up to eat.

7 - She is a HORRIBLE napper (unless, of course, you are holding her)

8 - She has never met a stranger...if you talk to her, she's all smiles.

9 - Her favorite toys make a crinkly noise.

10 - She has beautiful blue eyes and dimples that will melt your heart.

11 -No matter where she is, if she hears her big brother Ian, she will turn her head in his direction.  She loves her brothers!

12 - She has my hair color.

13 - She looks like her older brother Ian when he was a baby.

14 - She rocked her heart surgery...home in 3 days!

15 -  Hailey is the only delivery I had 100% natural and went into labor on my own.

16 -  People seem drawn to her.  No matter where we are, people stop and talk to her and smile at her.

17 -  Hailey likes to sleep with a blanket rubbed against her face.

18 -  She LOVES to jabber...if you don't talk back to her in a time that she feels is acceptable, she will increase her volume until you do talk to her!

19 -  She is ticklish everywhere...under her chin, her neck, her stomach, her thigh.

20 - When I was pregnant with her, we called her Jellybean.  Now we call her Hailey Bean or just Bean.  We sometimes call her peanut because she was so small before her heart surgery.

21 - Hailey has received prayers across the country. We will forever be grateful for them.


Following are the explanation why Hailey always needs a barrette or bow in her hair...Check out this mess!

Ian LOVES jumping into Hailey's pics!

Lunch time got the best of Hailey today.

Getting really sleepy

Going....

Going....

Gone!

She is a person...

not a diagnosis! I know most people who read this will nod their head because we stress this with most people we encounter.  We always emphasize that our child is a "child with Down syndrome" and not a Downs child.  You wouldn't approach a child with cancer and refer to him/her as the cancer child.  Everyone wants their child to be treated as an individual...not their diagnosis.

The day after Hailey was born I remember I did a lot of rambling.  I think the thoughts were coming so fast and so random that I had to get them out...I didn't even care if anyone was listening (or if they even wanted to!).  I remember saying over and over that I wanted her to be Hailey...who happens to have Down syndrome like her brothers have brown hair.  I don't want Down syndrome to define her.

Our biggest obstacle seems to be in the medical field.  We have had a few professionals say "Downs children".  It is like fingernails on a chalkboard to me.  Depending on my mood and how the appointment is going, I will sometimes correct them.  I'm going to be honest, sometimes I don't have the energy to have the confrontation.

In the mail today, I had two written evaluation summaries from Hailey's visit to the Down syndrome clinic.  I was just skimming through it because we have received one from each individual in the appointment.   They all basically start the same, covering her history, current strengths and then weaknesses.  Some of it, I understand and some of it, puzzles me.  I was glancing through the doctor's review of Hailey's physical traits.  After her height and weight, I read "Very pretty little girl with blue eyes", "delightful, attractive little girl"  I cried.  It wasn't just a trickle of a tear or two.  I sobbed.  Yes, I do think she is beautiful too.  It just caught me off-guard.  They didn't just see her as her diagnosis...they didn't just see her having Down syndrome.  They truly saw her as Hailey. 

I want the world to view her as Hailey...I want the world to see there is more to every individual than the packaging that is on the outside.

As you can see with the double-chin and round cheeks...she's not missing many meals :-)

I love it when babies sleep like this!

This is what "un-healthy" looks like...

Not really!  Shortly after Hailey was born, I was somewhere (I say this because I was really in a fog those first few weeks) and overheard a conversation about a baby not yet born. 

Woman #1, "Do you know the gender?" 
Woman #2, "No, but it doesn't matter...as long as the baby is healthy."
Woman #1, "Yes, as long as the baby is healthy."

I'm going to be honest, it really was by the grace of God that I didn't turn around and speak my mind.  I wanted to scream, "So what!  What if your baby isn't born "healthy"?  You are still going to love that child!  It is still your child!"  Apparently I had enough rational thinking to bite my tongue and not interject myself into their private conversation.

Since that day, that phrase that we so commonly hear pregnant woman and many others say when talking about an unborn baby, I can't get it out of my mind.  I am 100% guilty of saying it myself.  I did with all 3 pregnancies.  I'm not saying I would ever wish the things Hailey has endured or will endure on anyone else's child.  There is just so much more! 

We always say "as long as they're healthy"...almost as if we are making a sacrifice by not having a preference on the gender.  We love Hailey as much as we do her brothers.  Medically speaking she may not have been born "healthy" but in our eyes, she is perfect!  She completes our family!

This is what "unhealthy" looks like....

I was so excited by this one...she actually stopped herself from falling forward!

I'm really tired, Mom!  (I wish I was this flexible!)

Mom, you haven't told me how to get out of this position.

(I apologize for the rambling this morning...not much sleep last night! For some reason, I cannot get my feelings into words on the blog!)  Happy Sunday!

Where to Start...

Well, I've made the commitment to blog  for the next 31 days consecutively....so where do I start, what do I write?  In the grand scheme of things, we are relatively new to the world of special needs and DS.  We've been on this journey for 7 months.  When you get a surprise birth diagnosis, you get a crash course.  It is like driving down the road at 65 miles an hour and hitting a brick wall.  You had great momentum with your life, you were enjoying yourself and BAM...life has stopped (well...you think it has).  Suddenly, you think everything is over.  Your goals and dreams for the future are no more.  You don't know how to proceed.  You don't know what is next or how to accomplish it when you find out what next is.  You feel like your house of cards has been toppled and now matter how fast you try to pick them up and reassemble, it will never ever be the same.

Wow....I didn't think I would remember those thoughts and feelings so vividly, but I do.  One day, I want to apologize to Hailey for the way I felt and reacted the day she was born.  I'm ashamed that I felt my life was over because in the eyes of medicine and society, she wasn't born "perfect".  I cried and cried and then cried some more.  I cried so much those first few months of her life.  First, I cried about her being taken to the NICU.  Then came the diagnosis.  That led to more crying about the unknown, the "why me", and the "why Hailey".  Those were followed with the crying of what do we do, how do we go on, and what does the future hold for her.  Somehow the crying then changed to crying because I wanted my baby home.  I remember one day at home, before Hailey came home from the NICU.  I was standing at the kitchen sink washing dishes.  I looked out the window at the cul-de-sac.  It was a beautiful spring day.  The neighbors were out in full force.  It was like looking at a snow-globe.  I wanted to open my door and scream at the top of my lungs at them.  Why was their life going on when mine had stopped?  How could they be living their lives when my baby girl was not home?  I truly do NOT think the world revolves around me and my family but at that moment, I wanted someone to know how I was feeling and to understand it.

I grew a lot those 19 days that Hailey spent in the special care nursery.  She had fabulous nurses that just listened.  They listened as I worked through all those fears.  They shared their life experiences.  With each passing day, Down syndrome played less a role in our lives than getting her home to her brothers.  They watched me fall more in love with my daughter every day. 

I know that it is human nature to have the feelings I did and to work through them but I wish I would have been more educated on Down syndrome.  I wasn't then but, boy, am I now!  I have a new appreciation for mother's/family's of children with special needs.  I never knew the obstacles and hurdles that existed.  Thank goodness a dear friend of mine who has a child with cerebral palsy helped me through all of that. 

I hope over the next 31 days that my blogging friends along with myself, can help shed some light onto others that Down syndrome is just a small part of our children.  There is so much more to them.  I hope that as Hailey grows up, people look beyond her diagnosis and get to know the person inside.  One thing I'm positive of....there is going to be a whole LOT of personality inside that little girl!

Following is a "brief" (sorry, there are quite a few) timeline of pics that shows how we got to where we are now.  

A few minutes before being whisked to the NICU.

Meeting big brother for the first time.

Meeting my other big brother, Ian.

We're going home!

Yes, that is Nick Lachey.

Wow...what a mohawk!

Mommy and me

Day after open heart surgery....I'm all fixed!

I told you everything is going to be ok!