31 for 21: Frankenstein Finally Moves

Yes, I know...odd analogy, but if you could have seen Hailey for the last week and half, you would understand.  Hailey recently started wearing ankle/foot orthotics.  When she stands, her ankles pronate (roll in).  It is making it very difficult for her to start walking.  It causes her to put all of her weight onto her toes or all on her heels...which makes it difficult to take steps.

The boys chose her pattern.

Little miss was getting along fairly good before her new orthotics.  She was cruising furniture, standing some independently, stepping from one piece of furniture to another and walking with her walking toys.  Unfortunately, that all ended once Hailey started wearing her new shoes and orthotics (she acted like she had concrete blocks on her feet!)...until today.

Hailey had therapy through EI today.  I voiced my disappointment in Hailey's movements or lack of movements recently.  It is so frustrating to go backwards in development.  Well in true Hailey fashion...she made me look like a fool.

She stood for quite awhile and played ball with her brother and cruised around the table.

There is nothing I love more than this girl proving me wrong!!!!!

31 for 21: The Unplanned Road

Part of me knew after Ian was about 2 that our family wasn't complete.  It felt like something was missing...someone.  We needed something more.  We talked about having another baby and left it up to God or to some fate.  Both of us were speechless that we became pregnant in only a couple of weeks.  Unfortunately, I suffered a miscarriage when I was only 7 or 8 weeks pregnant.  It hit me like a ton of bricks.  I wasn't prepared for the loss I felt.  I was mad at myself.  What did I do to deserve this?  Why my baby?  We will never know why I miscarried.  Something just wasn't right.  The one thing we did realize is that we truly wanted another baby, but neither of us could handle the pain of losing another baby.  Shortly after that conversation, I found out we were pregnant again.  We were cautiously optimistic.  It was our sign...everything was going to be okay.  This would be the baby we wanted, wouldn't it?  My husband and I didn't tell anyone right away that we were pregnant.  We were scared.  The miscarriage was hard and it was even harder if people knew.  Regardless of the outcome of my 4th pregnancy, we had made the joint decision that we would stop trying to have anymore children.  Emotionally, we couldn't handle anymore loss.

My pregnancy was uneventful.  We declined all prenatal testing, because it wouldn't change anything.  We were under the impression that the only reason for all the testing was to terminate if things didn't look "perfect" (I have changed my opinion on this some, but I'll save that for another post).  My ultrasound at 20 weeks revealed we were expecting a little girl, but nothing else raised any concerns with the doctor.  Oh my heavens, what would we do with a girl?  How do you raise a little girl?  I had her gender double and triple checked a couple of more times through my pregnancy.  I have chronic high blood pressure and had low fluid when I was pregnant with my middle child.  Neither of those issues creeped up during Hailey's pregnancy.  I feverishly worked on a to-do list the night before having Hailey.  I had too many loose ends.  I'll never forget the look on my husband's face that night.  He looked up at me and said, "You don't think she is waiting until March 21 (the date of our scheduled c-section)?"  I shook my head, "Nope, I giver her maybe two more weeks."  Little did we know...I was already in labor.

I wasn't prepared to have a baby that day.  It was too soon...she was too early.  I was more scared for her birth than I was the previous one.  Everything was so unplanned and happened too fast.  Everything seemed to be wrong and out of control.  It was such chaos.  So when my husband and the doctor returned from the special care nursery, I felt like it was all a dream when the doctor announced that Hailey has Down syndrome.  What did that mean?  How could that be?  Even though I was 36, the odds are still relatively low that she would have DS.  Our life was over...the boys' lives were over.  What would we do?  How would we face our family and our friends?  I didn't want anyone's pity.  The doctor rambled on about how she was still just a baby and our baby.  We take her home and love her.  Take everything as it comes.  He also mentioned that every family that he knew that had a child with Down syndrome said their lives were better than before having that child.  I couldn't hear him by that point.  I didn't want t hear him.  I wanted to start the day over.  I wanted the baby I was supposed to have...the one from my dreams.  You know, the one that was going to be the apple of daddy's eye and mommy's little girl.  Could we even still name her Hailey?  Why our daughter?  Why not someone else?  Was this punishment for wanting another baby?

I didn't get to see Hailey much that night, but my husband spent a lot of time by her side.  He couldn't sleep.  I drifted in and out in a fog.  Maybe it was all a dream.  Maybe the blood test would reveal the doctor's suspicions were incorrect.  It had to be wrong.  The days and weeks that followed in the NICU were long and exhausting, but this mother's heart needed them.  They helped me see my daughter.  Many days it was just her and I.  Those deep blue almond shaped eyes called out to me.  She needed me to step up and by her mom.  She grabbed my heart and told me everything would be okay.

I realized none of this was about me.  It wasn't about my husband.  It wasn't punishment from God.  Everything had to do with her.  Her life was meant to be.  She belongs here.  She belongs with us.  God makes no mistakes.

Hailey in the NICU

Hailey yesterday cheesing for the camera.

31 for 21: Who is Hailey?

Yes, I'm well aware that all parents brag on their children, think they can do no wrong, and think they are the most fabulous children in the world.  Am I any different?  Not a chance.  I don't believe my children are perfect (none of us are), but each of them fits perfectly into our family.  Hailey is no different.  She was our missing puzzle piece.  She completes our family.

Hailey is only 19 months old, but there is more personality in that tiny body than I have ever encountered. 

She is loving...
She is determined...
She is stubborn...

She is beautiful...

She is strong....

She is funny.

She is a mess...

She is sassy....

She loves books....

She is playful....

She is helpful....

She is a hurricane....

She is caring...

She is mischievous...

She is social....

 She is the best sleeper...

She is an irreplaceable part of this...

31 for 21: The R Word

While most of my posts this month are positive, feel good topics and conversations, I have to admit that not all of them will be.  We have had a bumpy road to get where we are.  Some days are easy, some days not.  Honestly though, to me, all parenting is like that.  No one wants to see their child in pain, struggling, or unhappy.  In order to talk about Down syndrome awareness, I must broach the subject of the r-word.  It is not a happy topic.  My fellow blogging mommy, Shannon, said it best here.

We all know that racial and religious slurs are very much a part of history.  Everyone of us grew up hearing one or another.  I am a product of the 90's.  The r-word is what we said when we thought something was dumb, lame or stupid.  I am embarrassed that I used it.  I wish someone would have called me out on it.  An online medical dictionary defines Down syndrome as:  the most common cause of mental retardation and malformation in a newborn.  Wikipedia defines it as:  a chromosomal condition caused by the presence of all or part of a third copy of chromosome 21.^[1] Down syndrome is the most common chromosome abnormality in humans.^[2] It is typically associated with a delay in cognitive ability (mental retardation, or MR) and physical growth, and a particular set of facial characteristics.  Do you see the common theme?  Mental retardation.  When people use the r-word in every day slang, it changes the word.  It is now not medical terminology used to describe an individual with intellectual disabilities.  It is a derogatory word that in essence mocks those individuals affected with disabilities.

Over time, it has become socially unacceptable to use racial and religious slurs.  There is a big movement in Hollywood now for people to stop using the word "gay" as slang.  So why doesn't Hollywood blink an eye when using the r-word or Downsy in their films?

Do I think every person that uses the r-word is purposely mocking or making fun of my daughter?  No.  I don't think most people are using the word in malice, but as a parent of a child with Down syndrome, can't you please find a different word to use?  Please stand up and help us end the use of this word.  For my daughter...for the other 400,000 individuals with Down syndrome.

The next time you hear the r-word or get ready to use it...think of this beautiful little girl.  Would you or could you say it to her face?  Please have more respect for my daughter!

October is Down Syndrome Awareness Month

Today starts Down Syndrome Awareness Month.  The majority of people know that Down syndrome is when an individual is born with an extra copy of the 21st chromosome.  People who have had the privilege to personally know an individual with Down syndrome can see beyond the limitations and preconceived notions that the term "Down syndrome" brings to mind.  For those people who do not know someone with Down syndrome, this month is for you.  This month gives us the opportunity to show you how people with Down syndrome are the same as you and I.  They are individuals with thoughts, feelings and dreams.  They are productive members are society and their life has meaning and value.

Again this year, I am participating in 31 for 21.  I will blog every day for the month of October for Down syndrome.  Some blogs will be more in depth, some will have more emotion and some will just be pictures or thoughts on our day.  There are some fabulous writers who are also participating.  Please take a minute from your day to read what some of the other people have to say about Down syndrome and their lives.  You might find that you have more in common with their families than you realized.

Last year when I agreed to blog for 31 days, it seemed overwhelming.  It seemed daunting.  We were still fairly new to the Down syndrome journey.  Hailey was only 8 months old.  We had forged through some of the most difficult days of our lives.  Receiving her diagnosis after such a crazy labor and delivery still seems like a dream.  I lived in a fog for several weeks.  Shortly after, receiving the news that our daughter definitely needed open heart surgery knocked the wind out of me.  I wasn't prepared to put her life in the hands of the surgeon nor was I ready to hand her back to God.  In true Hailey fashion, she rocked her heart surgery and was home quicker than anyone had expected.  I wasn't sure last October if I was ready to put myself out like that.  I really hadn't spoken about DS to a lot of people at that point...people close to me yes, people on DS boards yes, but I'm not sure I had even typed the words Down syndrome on Facebook at that point.  I'm glad I did.  I received amazing feedback.  Those that think I'm on a soapbox can just not read it because I am going to continue to advocate for my daughter (as I do with my boys) until I'm no longer on Earth.  That's what parents do!

I was blessed with this amazing little girl.  I want to the world to see her and her potential (but you can only look....I get to keep her!)

Click the 31 for 21 button on the right to check out all the other blogs.  Please share my blog and others.  The more people that read them, the greater impact our words can have!