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 :-)

Blog Hop....My favorite post

This final blog hop for the summer was difficult.  I have several favorites.  Some of my favorites match up with readers favorites and some don't.  Most of my favorites were not easy to write because the emotion was raw....many times, the tears flowed as I typed.  In the end, I always feel better, getting the emotions out.  Letting other moms know, it is okay to have those feelings....it never makes you less of a mom, nor do you love your child any less.  Trust me....with each passing day, I love my children more than the day before.  I never knew that was possible.

My favorite post would have to be about living a "normal life".  Something....after Hailey was diagnosed....I never thought was possible.  Something that was unattainable....something that I cherish every day.

Here that post is.....

"Normal" Life

"Normal" life

I have been absolutely horrible keeping up with my blog in the past few weeks and I have absolutely no excuse...none!

Once a month, I meet up with local moms from our DS association.  Our association is so large that we have to break up into smaller groups for some activities.  I love Moms Night Out.  I was so incredibly nervous the first time I joined them for dinner.  I felt like I was a new student at a new school.  Of course, I enjoyed myself.  I think Hailey is one of the younger babies in the group.  Some of the children are in preschool or in the early years of elementary school.  These moms have been there, done that.  They've been on this journey longer than me and I trust their advice.  More than one of them over the past 6 or 7 months have told me that the first year is challenging and it will get better.  I listened to them but I'm not sure I truly believed them until recently.

Webster's defines "normal" as "a form or state regarded as the norm (standard)".  It is a perception....it is left up to interpretation.  What one person's normal is not the norm for another person.  I don't even like using the word "normal" but it seems to be a word that most people can relate to and it is quite over-used.   "Normal" to me is living life day-to-day with my family and friends.  It is watching my boys go to school, play soccer, spend time with their friends, and pushing the limits as they gain independence and turn into young men (one day...I don't want it happening too soon!).  It is watching my little girl overcome the obstacles that are put in front of her.  It is breathing easier because her heart is fixed...it is dealing with her diagnosis of Down syndrome but not letting it define her.  It had caused some of her obstacles and will continue to do so.  It doesn't consume every thought, but yes, it will always be a part of our lives.  We accept her diagnosis, but we don't use the word "can't".  There is nothing we are telling her she can't do.  In fact, we plan on pushing her to overcome her obstacles and to become the best person she can be.  "Normal" is having dinners outside on the patio with the kids, it is playing kickball in the backyard with the boys, it is watching Hailey observe the world around her and watching her try to figure out how to get into stuff (especially if it is not for toddler consumption or suitable for toddler play).  Our normal is watching our children enjoy living and become individuals. 

Today, I was talking about "normal" and my lack of blogging recently.  She looked at me and said, "What a relief for everyone.  Normal is what we all prayed for after Hailey was born."  Some people (more than likely, those outside of the world of DS, heart defects, or special needs) wouldn't understand why "normal" is such a big deal.  A year ago, I was still reeling from Hailey's Down syndrome diagnosis and that of her heart defect.  We were struggling with each bottle.  Praying that she would actually finish the entire bottle and do it in under an hour.  Praying with each doctor's appointment that she would gain weight.  Praying each minute of the day that her heart would keep working hard enough to keep her alive.  Praying each night that we would all see tomorrow.  We lived in constant fear of the unknown and of the future.  We hadn't learned much about DS and we were terrified of her impeding open heart surgery and we didn't want all of that to dominate the boys' life.  We walked through life going through the motions.

Sometime after her open heart surgery, I woke up so to speak.  I'm not going through the motions anymore.  We are living life.  I will admit though...my normal is a little different than it once was.  We do have a few more doctor appointments...therapy appointments that we hadn't had before...but more than that has changed.  We have changed.  We don't take life for granted anymore.  We see the world differently.  Things that we thought mattered before really have little significance.  We see people different...I see people as individuals..with thoughts, feelings, opinions...value.  Every life has value.  I don't judge as quickly or harshly...as I've said before, everyone has a story.

I don't know how long this "normal" will last but I know that I'm loving every minute of it and we will take the new "normal" in stride whenever it comes.

**
I hope no one looks at my normal as sad or has pity for us.  You see...our "normal" includes a beautiful, dimpled, determined, strong, chatty one-year old that didn't exist in our old normal.  I wouldn't want to ever go back!

I wrote the original post in April those pics are a little old....here are pics of our "normal".

My little athletes

Hailey sneaking up the stairs

Our little hurricane...she leaves a path wherever she goes!

Such a beautiful face

Lots of swimming and playing in the water

Practicing our standing...

Hailey begging for food...and succeeding.

Lots of giggles and dimples.

Pouty faces

The "oooohhhhh" face

Lots of pigtails

She loves babies...real and not.

Isn't this picture of normal fantastic?

Please check out the other posts in the blog hop....read which are their favorite posts!  They are fabulous writers!

Faces of Hailey

We just returned last night from our 9 day vacation to see "the" mouse.  Everyone had a good time and everyone is now playing catch up but since I didn't get to participate in the blog hop last week, I didn't want to miss another week.  This week we are showing pictures of our connection with a disability.

I thought I would share some of the many faces of Hailey.  We generally see most of them every day.  She is quite comical!  Hope you enjoy the faces as much as we do!

Check out more pictures on the blog hop here.

What Not to Say

I'm writing this post as part of the weekly blog hop Meriah at With a Little Moxie.  Today's topic:  what have people said that has gotten under your skin about something that relates to your connection with disability - and what do you want them to say instead?

I'm going to be 100% honest...before we had Hailey, I know I said things that weren't appropriate, I know I didn't put person first and I said the "r" word.  I'm not going to make any excuses for myself.  There is none.  I am grateful that I have learned more over the last year than I have over the last 10.  One very important lesson I have learned, is people first...every child, every person comes first...not their disability or their diagnosis.  They have the same thoughts and feelings as others and deserve to be treated as you would want treated or how you would want your child treated.  

Well now back to the topic on hand...what not to say:

• R-word.  Please stop and think before you use it.  Find another word...stupid, dumb, ignorant.  Use a thesaurus if you are at a lost.  Think of any other word!!!!  
• "Special" parents...I'm not special.  I'm an ordinary Midwest mom raising her three children.  If I am special, it isn't the reason God gave us Hailey...Hailey has made me special.  There is no explanation to why certain children are born with disabilities and others are not.  I am certain it is not because I am "special".  
• "She is here to teach us how to live life"...Hailey was not put on this world to be your teacher anymore than my boys were put here to teach us things.  That is a huge weight for such a little girl to bear, don't you think.  My daughter is here to live her life to the fullest and that is just what she is going to do!  If she teaches us stuff along the way, that is just a bonus.  
• I'm sorry...don't ever apologize for my daughter.  I'm not sorry about her.  Does her diagnosis bum me out sometimes?  Yes, but Down syndrome is part of her.  If she didn't have Down syndrome, she wouldn't be Hailey.  
•  Down's kid, Down syndrome kid, kids like them...Would you call a child with cancer, "the cancer kid"?  Would you say "blind kid", "dumb kid"?  How would you want your child spoken to or about?  She is a child first...yes, she has Down syndrome.  So please refer to her and her pals with extra chromosome as a child with Down syndrome.  Or don't even mention it at all...she's just Hailey.

 I know most people do not mean to hurt anyone's feelings...they do not intend on offending anyone.  There are so many other things you can say that will make any mom happy!  You can always comment how beautiful she is, how smart she is, how beautiful her eyes are, how adorable her dimples are, how much she looks like her big brothers...the list goes on!

If you have questions about Hailey or Down syndrome, please feel free to ask.  I always welcome an opportunity to pass along valid information about Down syndrome.  And...in case you didn't pick up on it, I am very proud of my little girl and love to talk about her!  (These are all repeats but cute none the less!)