The Hailey Herald

The Hailey Herald

Friday, May 31, 2013

Why Me?

When Hailey was born, there were lots of sobs and tears and many, many, many questions of "why".

Why me?  Looking at other mothers and infants at the hospital, why us?  Why Hailey?  Why do this to my boys?  Watching children play outside, what did we do wrong?  Watching children play basketball, what does this mean?  Watching families in church, why are we being punished?

Those questions, the blame, the guilt, they ran through my head every second of every day (awake and asleep) for several weeks.  They stayed with me while sitting by her bed in the NICU, while tucking the boys in at night, while sitting through cardiology appointments, while feeding my daughter, while hanging out with friends.  They haunted my mind and made my soul ache.

Day by day, things changed.  My heart healed (along with Hailey's thanks to a very skilled surgeon and his fabulous team at Cincinnati Children's Hospital) mind settled.  I still ask questions and some of them are still "why".  As I listen to the giggles and see the dimples, I ask "Why us"?  As I watch her learn new things and play with her brothers, why them?  Seeing her walk up and down aisles saying "Hi' to every new person she sees, what did we do?  With little arms wrapped around my neck feeling little hands pat my back, how did this happen?  Hearing "mum", "dadda", "E" and "Daden", I know I'll never get those answers.

Why us and not someone else?  How did we get so lucky?  What did we do to deserve this gift?  How did we not initially see how perfect she was?

I thank God every day for this sweet little girl and her big brothers.

A friend just posted this fits perfectly!  "Joy is what happens to us when we allow ourselves to recognize how good things really are."

Wednesday, May 29, 2013

Cousins, Rides, Water & Words

Every day, my children amaze me.  Their active imaginations, nonstop energy, curiosity and even their boundary testing.  Hailey is no different.  Over the weekend, we had company.  I got to see a different side to Hailey this weekend.  Our nephew is almost one.  Very active and curious.  You aren't used to sharing your toys, your snacks.  He is close to walking so he puts himself very close to her level.  I thought it would bother me that in some regards he is close to Hailey's milestones.  It didn't in the least.  It was fun to watch the two of them interact.  We even heard a few new words.."Jax" and "mine" were uttered more than once.  We didn't even know she knew the word "mine", but it made us all laugh.  Hailey is a people person and is the first to say "hello" to everyone she sees.  She loves to join picnics, families, etc at soccer games, amusement parks, etc.  However, she likes to do it on her terms.  She can invade your space, but she doesn't really like someone invading "her" space.  Jax challenged her control.  She did good...she might have pouted "a little", but wasn't mean at all!

See...I'm sharing

He's getting a little close....

Excuse you....are you really letting him grab my bowl!

Hailey was finally big enough to enjoy a little of Kings Island and Great Wolf Lodge.  Her first ride by herself went well...she even stayed put :-)  She seemed to love the water...slides, waves, geysers

She even liked the little train.

Jax on the other hand, seemed a little less than impressed.

Hailey invading Jax's space

Sharing her opinion or telling him off...we aren't quite sure.
Disney this year will be in adventure with Hailey now walking.  It was a challenge last year with her crawling, but walking she will think she is "entitled" get out of the stroller and explore the parks.  She's quite the people person and likes to chat with people.  At KI, she went up and down this brick bench stopping to say "Hi", waving, examining electronics and trying to inspect purses/bags.  Fortunately, most people are good sports about Miss Social.

You mean, you are letting me free?

Jax getting away from Hailey or just exploring?
The next day we headed to Great Wolf Lodge for a little swimming.  Hailey hasn't been in quite awhile.  Definitely not since she started walking so I wasn't sure how she would react to it all.

Checking out everything before getting too close.

She loved the geysers and the waves in the wave pool.
At one point, a little boy was standing in front of the above geyser.  He seemed apprehensive about it.  Hailey looked at him, grabbed his hand and put it on top of the geyser.  I was impressed with her initiative to show the other child what to do.  The little boy still didn't seem sure of it, but I was happy with her thought process.
I think I like this place.

Where did my baby go?

Hey, Jax, what do you think?
I wasn't as bothered with Hailey's delays in comparison to the other two year olds there.  I didn't let her walk up the steps (we were in a little of a hurry) and I stayed at the top to make sure she was going to sit and go down the slide.  We will work next time on walking up the steps and sitting on the slide by herself (baby steps).  The first time down, she had zero facial expression.  I asked her if she wanted to go again and she signed and said "more slide".  How can you say "no" to that?  After a few times, she started saying, "more water slide please".  She said the word slide and made up her own sign :-)

Big brother making sure Hailey gets off the slide okay.

Hailey & Jax hanging out in her playhouse before Jax had to head home.

Happy to play side by side with their own toy :-)

I think Jax's first trip to OH was a success.  The kids were all exhausted when they left.  Hailey showed that she isn't quite the baby that she is in our eyes.  She eventually shared her toys and played with Jax.  She added new words and phrases over the two days they were here...water slide, Jax, Who's that and mine.  I see lots of trouble ahead with these two :-)  Once our nephew Landon is walking, we are in HUGE trouble with this trio!

Sunday, May 19, 2013

Not the Battle I Expected!

In case anyone has forgotten, we have an entire graveyard of sippy cups/straw cups/open cups...I think last count there are 15 different varieties packed away in the basement. 

Here are a few...
Hailey was getting to the point where she would scream and cry if a cup of any sort came near her.  She's used a straw a couple of times successfully for her developmental therapist and her speech therapist, however, never at home.  It was almost as if she just physically couldn't do it.  I felt bad to keep pushing it, but I was done with the bottles.  I know some won't understand, what's the big deal, it's just a bottle.  Brayden's bottles disappeared at 10 months...Ian never had them.  Sippy cups, straw wasn't a battle.  They weren't work.  I handed them a cup and they started drinking.  They just did it.  I didn't have to ask professionals for help, I didn't need to go on message boards and ask other mothers for tips and tricks (and try every single one of them and have them fail), I didn't google and read every article that I could about how to transition from the bottle to a straw.  Yes, that is what I have done with Hailey.  We have been working on transitioning since she was 9 months old.  Yes, 18 months ago. 

With only two speech therapy sessions left, I grabbed Hailey's straw cup and a juice pouch as I headed out the door on Thursday.  The boys only have a couple of weeks left of school and I was set to take away Hailey's bottles once school was out for the summer.  I was going to start by taking away her bottle after lunch and dig out the dreaded honey bear cup and start again.  Something had to give.  Something had to work.

With Ian and Hailey in tow, we headed downtown for speech therapy.  Hailey loves the waiting room almost as much therapy itself.  Lots of people to socialize with and they have nowhere to go :-)  She makes her way up and down the lines of chairs saying Hi and checking out what everyone is doing (working on laptops, paperwork, using electronics)...she's quite the character!

Playing peek-a-boo with one of the employees.

She found a mirror and started chatting away.

We headed into therapy with Jen.  In case I haven't said it in the last month, we love our therapist!  Jen is the best.  Hailey loves her.  She tolerates Ian hanging out in therapy (he has afternoon kindergarten and sometimes has to tag along).  She works great with Hailey and switches gears as frequently as needed to keep Hailey engaged.

Working on animals and puzzles.

Doing our zips and zooms.

Can't forget our alphabet sounds.

About midway through our session, Jen filled Hailey's straw cup and gave it a few squeezes.  Hailey then drank a few sips on her own.  We moved onto other things.  Several times through out the session, Hailey wanted more to drink and successfully used a straw.  At the end of therapy, we were given our homework until our next session.  This weeks:  continue working on two word sentences, point to items and say "this is ___".   (Hailey's favorite words are "what's this".  We are working on getting her to label items.  Our third task was "continue working on straw".  I decided on the way home to remove Hailey's noon bottle and replace it with the straw and then slowly phase out the other two. 

After lunch, I gave Hailey her straw cup tears, no yelling....

Either I've been conned or it just clicked!
 That experience with the cup went so well, I thought I might try it again after nap time.  This is what I got...a few tears, but she drank almost 3 ounces of milk.

Apparently that wasn't as much of a fight has I expected so, I decided to try again when she would generally have an evening bottle.  This is the look she gave me.....

Well, that look isn't enough to get her mother to give up.  We'd done so well so far, might as well push the envelope.  She drank another 3 ounces at bedtime with a little bribery of a small, not so good for you snack of potato chips.  On Friday, I decided we made it through most of Thursday, why stop then.  I did get a few of her over dramatic "no's" during the day (see photo below), but there were no tantrums.

Day 2 - was AWESOME!

I did let Hailey see me pack up all of the bottles and parts on Friday.  She watched me closely.  I didn't throw them in the trash but she thinks they are gone.  Throughout the weekend, we have let Hailey sample a few other drinks from a straw while we have been out and about.  She really liked the boys' icee , obsessed with my water glass and yes, I even let her try Pepsi.  (To all the people who stared at me at Sam's Club while my daughter tried Pepsi...keep on staring, don't will never understand this milestone.)

I know most of my Facebook friends are probably annoyed with all the chattering I have had over drinking out of a straw and getting rid of Hailey's bottles.  I almost place this milestone up with walking (and it makes me dread potty training!).  We have worked so hard on this, there have been tears and frustration from both Hailey and me.  It was something Hailey just couldn't get or understand and I couldn't make her.  I couldn't will her to do it.  She had to do it on her own.  I hated that even giving her all the tools to accomplish it didn't help.

Hailey's last bottle was Thursday at 9 a.m.  I haven't given in and honestly, she hasn't given me that much of a fight.  I hope we can call this one a success!  And yes, I shed a few tears when I realized that my little girl mastered it...even if it wasn't when her mom wanted her to!  I also might have shed a couple of tears when Hailey told her daddy "straw" when we were telling him that the bottles were "all gone".

My little girl is growing up and I'm positive she might drive me crazy in the process, but check out those dimples...who can resist that face?!?!?

Monday, May 6, 2013

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 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...