The Hailey Herald

The Hailey Herald

Thursday, January 17, 2013

Sweet Sound of Laughter

Most people will tell you, I am a social person...that is the nice way.  I am chatty.  My husband frequently comments that I have lengthy conversations with people I've never met.  It is true.  While I am social, I'm not someone who loves attention.  I prefer to blend in with the crowd and while running errands would rather go unnoticed some days.  It was actually a plus to moving into a new area.  I could run errand around town (and even if I was not looking my best or not feeling well) and no one knew me.

As the years have passed and the boys have been in more activities and in school, that started happening less often.  We always seem to run into people we know.  Now, we have Hailey.  We no longer go unnoticed...scratch that...Hailey does not go unnoticed!  No matter where we go, no matter where we are...Hailey gets attention.  She's not doing anything tricks.  She is 100% just being herself!

Today was an excellent example.  The grocery store is in the same plaza as the YMCA that we belong to.  After working out, Ian, Hailey and I ran into the store to pick up a few things.  We were probably in the store for about 35 minutes.  I had 5 people stop and talk to us.  What was Hailey doing, you might wonder.  She was laughing.  She was laughing to get Ian and I to laugh.  When we would laugh at her, she would laugh harder.  It was the funniest thing.  At the end of our shopping trip,  a woman at the end of the aisle, walked back to me.  She said, "I have to tell you, your daughter is the cutest little girl I have ever seen.  The world could use more laughter like hers in it."  I simply replied, "Yes, it does".  My heart swelled....I get to hear this all the time!

Here are a few pictures of Hailey playing in her new favorite spot...great for gross motor! (oh...the first couple is what it looks like when someone gets into trouble...not a happy girl!)

Wednesday, January 16, 2013

When Hard Work Pays Off

Someone commented that Hailey is more the size of a one year old than a two year old.  I don't realize it most of the time because she is the only toddler running around here.  But...when we are out and about, I realize how little she actually is.  However, I have been carrying this "one year" old for almost 3 years (if you count being pregnant with her).  I love the extra cuddles, hugs and kisses I get from her while carrying back is looking forward for her walking 100% of the time :-) 

I'll preface this with, this is still a work in progress and I am well aware that she isn't a full-time walker yet, but this is AWESOME!  She is walking more and more every day (but the more she walks, the more mom wants her to do!) 

I'm so incredibly proud of our little girl!  Yes, the motivation today was jewelry.  What can I say, the girl has a LOVE for bling!!!

(please ignore my annoying voice!)

Tuesday, January 15, 2013

From Grief to Celebration by Margaret (Gary) review

I've put off reading this book for awhile.  I'm not sure why.  I think it is because I haven't gotten into a good flow of reading anything other than emails and blogs.  Short excerpts into people's lives.  I follow Alex's blog rather faithfully.  I love seeing a view into the world of a teenage girl with Down syndrome.  Sometimes it calms my fears of what the future has in store for Hailey.  Occasionally, it exasperates my anxiety.  I think Gary sometimes gets a kick out of scaring us moms of younger girls with DS...she's been through it.  The stuff none of us are looking forward to...bras, puberty, other teenage girls.  Those are a few of the things that cause me nightmares and keep me awake at night.

I went with my husband to a basketball game on our anniversary.  The downside of getting married in December to a man who referees high school basketball...every year your anniversary doesn't fall on a Sunday, there is a good chance you will skip celebrating your anniversary...change your plans to a lunch date...or go with him to his game.  I don't particularly get into games I know nothing about either team or know no one on either team, so I downloaded the book before we left and read it while I watched tuned out the game.

If I wouldn't have known better, I would have thought Gary was in my head...or she was actually writing our story about Hailey and not her own about Alex.  Even though we are well beyond the grief/grieving stage, it was refreshing to read Gary's honesty about those initial feelings.  To know I'm not he only mom to blame myself...that I let my husband down or that I failed my family.  those feelings weighed me down at first and I thought I was crazy...guess either I'm not or Gary and I both are :-)

I loved her describing her experience with 10 verbs. I had to laugh through part of the Research chapter.  Gary commented that there was a pattern she noticed to conversations with families that had children with Down syndrome...they will bring sunshine...make you a better person...enrich your life.  She said she thought they had all drank a magic potion that caused them to say the same thing.  I chuckled out loud when I read that part.  I remember thinking the same thing!  Gary then went onto say, "But within six months I learned I was wrong, more wrong than I had ever been.  I guzzled that magic potion and can now say those words as fast as I can say my own name."  After Hailey was first born, I would roll my eyes when people would tell me those things.  Now, I find myself saying the exact same things.

I, too, get annoyed with questions that arise from ignorance, but of course, I try to not get too snippy or rude in my response because a mere two years ago....I was ignorant.  I didn't know anything about Down syndrome.

Gary's book is of course, written from her perspective of raising her daughter, Alex.  I think it is a perfect book for new parents of children with Down syndrome.  I truly wished I would have read this book when Hailey was much younger, but before her heart surgery I refused to focus on anything other than her heart and her weight gain.

Thank you, Gary for sharing your story with others and for your honesty! I'm positive that I will continue to follow her daughter, Alex, and ask Gary for advice as I muddle through the years of parenting my little hurricane.

Monday, January 14, 2013

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 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 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 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 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 I will just pout until she gives it back.

Never fails, Hailey always has at least one sleeping picture a week :-)

Monday, January 7, 2013

Letter to Hailey

Oh, Hailey.  Words cannot describe how you have blown all expectations I had for you.  Yes, they were archaic based on not a single fact.  You continue to live up to your nickname of  "Hurricane".  As I type this, you are removing every item out of another cabinet.  You have 3 favorite cabinets and your goal every hour is to remove the contents of each of them.  At the moment we have one barricaded...the boys are tired of cleaning your mess.  I think it is time to invest in cabinet locks.  I didn't want to, but you have exhausted your mom.

This face doesn't look too sorry!

"Uh Oh"  Busted!

Your speech is still coming along okay.  You have had several words for, dad, mom, papaw, ball, book, sock, shoe, cracker.  This week you added no...thanks to your big brothers.  They find it comical.  I don't.  You wrinkle your nose, point your finger and yell "Neh".  You will tell us "all done" and "more" as you sign them.  "What's this?" is a frequent question we hear from you.  Phones and ipods are frequently picked up and followed with a "Hi Dad".  You like to call your dad on the phone!  You have a few dozen signs.  You would probably have more, but mom hasn't had time to learn more herself. 

You are working hard on walking.  If I could move all of our furniture about 5 feet apart, you would probably never crawl, but I'm afraid your dad would think I was nuts if I moved the furniture all that close!  You walked 9 minutes on the treadmill at your last physical therapy appointment without stopping so I know you have the strength.  We just have to make you more confident so you know you can do it!

You love to cheer for yourself every 4 or 5 steps!

You are starting pretend play.  I love watching you feed your baby, hug and pat her back and then laying her down and covering her with her blankie.  You like to push cars around, sign car and make car noises.  Sometimes you like making your little people princesses dance in their castle, but I think you like watching them fly off when you do it too fast more :-)

Mmm...maybe I need a taste.

I'm amazed at your social skills.  Both of your brothers are social.  Brayden has never met a stranger and will tell anyone he meets everything he knows!  Ian is a little more reserved but by no means, shy.  You, on the other hand....oh my!  No matter where I take you, you bring smiles to complete strangers.  You make people laugh.  You make grown-ups make silly faces and play silly games.  At basketball games, you reach for strangers.  You jumped into the arms of one woman at a basketball game.  Turns out she has an 11 year old daughter with Down syndrome.  How did you know?   How do you always know these things?  You get cheerleaders to throw little basketballs to you.  You flirt with all boys under the age of 18.  You love men over 55 and occasionally you make passes at the group in between 18 and 55!  You make faces at a friend's husband the second you see him.  It is comical.  He is the only one you stick your tongue out at.  I've watched you try to get the attention of an entire boys basketball team.  You finally convinced one of the boys to hold you and you wouldn't come back to mom.  You only laughed at me!  I truly love watching you work a room.  You do love attention, but you truly love people!

I forgot to add "nosey"!  You are laying over the recliner trying to get your brothers' monopoly game.

We've changed our strategy.  We are moving toward an open cup.

You are funny and affectionate.  You like climbing on the furniture to sit beside your brothers or sit on someone's lap.  You love giving hugs and patting our backs followed by you saying "ahhhhhh".  You laugh at your reflection in mirrors, ipad screens, and windows.  Your giggle makes us all laugh.  One of your brothers recently said, it is one of his favorite sounds. 

This is what staying up until midnight the night before looks like!

As your 2nd birthday approaches, I can't help but reflect.  Reflect on how far we've gone.  How life has changed.  How we have all changed.  You opened a world that we weren't really a part of.  You opened our eyes to the world around us.  We are more aware of our surroundings and people.  More thankful for little things.  We take less for granted.  After waiting for heart surgery, after watching your child suffer through congestive heart failure....a lot of life's "big" things are truly little things.

Look at my big girl watching her brother's game

Some people look at you and see you as a "defect".  They might see you as a "mistake".  Others might pity you or us.  Some may see you as weak.  They don't know anything!  You are the strongest, hardest working, most determined person I have ever met in my entire life!  You practice and work to accomplish things that comes naturally to most children.  You never give up!  You never stop.  You are a blessing to our family and I will never stop advocating for you (or your brothers).  I'm looking forward to watching you grow and learn!  We are blessed to have you in our family.

Friday, January 4, 2013

Ringing in the New Year

For the last 7 years, my husband has to work so we ring in the New Year at Great Wolf Lodge.  The boys love all the activities and of course, staying the night in a hotel.  They generally all make it until midnight...yes, even Hailey.  This year was no different.   

Love the gingerbread house again this year.

 The boys had their faces painted, watched the magician, had dinner and then headed down to the "big party".

Hailey didn't want to wear her hat for long.

My annual New Year's Eve picture with the kids

Hailey had to double check that Wiley wasn't touching her.

I know it is incredibly mean, but I love this picture!

Hailey definitely lives up to her pj's..."It's Fun to be Me"

Hailey was "dancing" so hard in her stroller that she made it move about 5 feet forward.  Ian enjoyed himself while Brayden quietly watched. 

About 12:05 a.m. as we were heading back to our room, Hailey crashed and the boys weren't too far behind her!

 I rang in the new year with my favorite 4 people and look forward to what 2013 brings!  I hope everyone has a fabulous new year!