The Hailey Herald

The Hailey Herald

Thursday, October 31, 2013

5 Things to Know (31 for 21)

Well I did it.  I successfully blogged for 31 days for Down syndrome awareness.  I'm hoping that everyone learned something new about Ds.  I am hoping one day that most people will see Ds the way we do.  I hope they see the individual first and the Ds second.  To close out the month, I'm going to join another blog hop.  It is with the IDSC (International Down Syndrome Coalition).

The five things I want you to know about Hailey.

1 - We love her to the moon and back.  Some may view her as "broken" or "imperfect".  She is beautiful, caring, smart, stubbron, sassy, helpful, a hurricane in disguise.  Look closely, you will see it, too.  She's perfect. (ask me that in an hour after she has destroyed 3 rooms and her "halo" might be a little crooked!)

2 - Do not underestimate her.  Do not think because she doesn't speak as clearly or because she has Ds that she does not understand.  You hide that phone.  She is watching.  Those keys you think are out of her reachh, she will find and you may lose them forever.  Those markers you hid on top of the microwave, she will get.  The girl misses nothing!

3 - Don't put limitations on her.  You expect great things from her and she will do great things.

4 - Teach your children that everyone is different.  It doesn't make one person right and another person wrong.  It is what makes our world such a fabulous place.  Teach them respect.  Teach them that every child wants to have friends and be liked.  Every child likes to play.

5 - Don't be afraid to ask questions about Hailey or Down syndrome (Trisomy 21, T21).  We don't mind.  The more people know, the less scary it is.

Oh, darn.  I have to break the rules.  I need a #6.  We aren't special people.  We just love our child.  We roll with the battles and we celebrate the milestones.  If you hear us down or you hear us upset, it isn't that we don't love our child or that our lives are miserables.  It makes us like every other parent in the world.  Some days are good, some days are bad, some days are great and some are miserable.  We all have them.  It doesn't make us less of a parent or person.  It makes us parents.

Thank you so much for reading Hailey's blog over the last month.  Most of my posts, in general, aren't about Down syndrome just more about Hailey and our life.  It was a road that we didn't anticipate, but it's our life and we are quite happy with it!

I'll leave you with pictures of the last few day.

Hailey sits in some of the craziest positions!

She loves to sit and climb all over her brothers!

Hailey climbed in the van and thought she was being sneaky by sitting in Ian's seat.

Hailey's pumpkin - Doc McStuffins

Our Wolverine and Scream 3

Hailey's reaction to Scream 3!

Hailey rocking her Doc McStuffins costume!

Wednesday, October 30, 2013

Hailey's Week in Pictures

I'll write something more thought provoking tomorrow.  Today, I'll share photos of our week.

Little Miss Hoarder has found the stash of rubber duckies in the house.  Wonder how many are behind the couch now?

Apparently, we have to pack ducks in our purse when we leave the house.

Daddy celebrated his 40th birthday (check out Bray's face...I can never get a perfect shot of all three :-)

Hailey definitely eyed that cake. 
She loved that cake, will NEVER use blue icing again!

Hailey learned to dust this week.  Apparently, her playhouse was very dusty.

I love watching her play.  She carried these characters in the living room and had quite the conversation with them.

The "cheese" face has returned. 

She was speaking quite loudly and waving her arms.  Someone either heard a huge tale or she was telling them off.

Alice wasn't on her good side...she wouldn't stand up.

There are no words on how much I love this little girl.

Tuesday, October 29, 2013

Trying for a Healthy Diet

A friend recently asked about Hailey's diet.  That is a good question :-)  I would love to say that Hailey eats all fruits, veggies, all whole grains and lots of fish.  The absolute truth...Hailey is a junk food junkie!  She will try to grab food from strangers at Reds games!  She loves food in general.  Up until last week, she ate everything but pancakes.  Then we gave her one with butter and syrup and guess what she loves pancakes, now.

Unfortunately with Down syndrome, Hailey is going to probably be short in stature and with low muscle tone, may have a weight issue.  We are working with her now on making good choice, eating "treats" in moderation, portion control and exercise.  We think it is important to teach her these things when she is young and keep reinforcing them as she grows up.

Hailey seems to not have the "I'm full" trigger.  Until she learns to recognize that, we watch her portions and obviously, her choices.  Luckily, Hailey loves fruits and vegetables.  She has to have a banana every morning with her cereal.  Every now and then we can change the banana with grapes, but honestly, not too often.  For lunch, she always has carrots, celery, cucumbers or tomatoes along with apples, grapes, kiwi, strawberries, pineapple, blueberries, etc.  She does always eat whole wheat bread.  Dinner, she eats what we are an age appropriate portion.  She never misses her veggies at dinner.  Tonight, the kids were all fighting about who was getting the last of the edamame. She loves salads, too!  When she plays "tea party", she sets her little plates on the table and says "here, salad".  It's funny!  Not many two year olds walk around asking for salad :-)

Hailey takes a multi-vitamin every day just in case, we are missing something in her diet.  Hailey does also eat yogurt and Kefir regularly.  We try to keep the good probiotics in her system.  Not only good for her belly, but if it can help keep away some of the stomach bugs, we are all for it.

Yes, Hailey does get some junk food and sweets.  I think it is important to teach her moderation and for not to think they are "forbidden" foods.  I don't want to find out she is going to a friend's house and gorging on junk food because they weren't allowed in her house.

Monday, October 28, 2013

Love Being a Mom, but What about Hailey? (31 for 21)

A friend of mine recently asked what my thoughts were on people with Down syndrome (particularly Hailey) having children.  I'm going to be 100% honest, this is a very difficult topic for me.  It was one of the first things that popped into my head after we heard Hailey had Ds.  Growing up, I didn't have a career path for my life.  I had no idea what job I wanted or where I wanted to work.  I had a few things that sounded "okay", but nothing I had a passion for.  My biggest dream was to be a mom.  Being a mom meant everything to me.  I'm not sure if it has anything to do with my mom passing at 5 or not.  I don't think so because when Dad remarried, I was lucky to have a fantastic mom that loved my brother and I like she birthed us.  I've never not considered her my mom (biology isn't everything).  My career was having children.  That career path was one that I kept to myself most of the time because most people don't like hearing the valedictorian announce they wanted to stay home with their children later in life.  Having Brayden made me the happiest person in the world.  The same thing happened when we had Ian.  My heart ached after we miscarried before Hailey.  I had failed the only career I had ever wanted.  I lost my baby.  My soul slowly healed while I was pregnant with Hailey, but I kept it guarded.  I tried not to fall in love with the little girl I was carrying.  Then the little bundle scared us coming weeks too early.  She was perfect.  7 lbs 7 oz.  Round face, pink skin.  In those few moments, I was so excited for the life she was going to lead.  How fantastic it would be, when she was older, to feel the same love, adoration, and excitement I was experiencing in that very moment.  I remember that first night trying to fall back asleep.  She will never be a mom.  She will never get to feel the overwhelming love I have for her and her brothers.  So many things I won't be able to share with her.  A ladies axillary group quilted blankets for all the babies in the NICU.  They gave me Hailey's after about a week in the hospital.  It's stunning.  Bright purple, aqua.  I love it.  I brought home that night and sat in Hailey's empty nursery and sobbed.  Body shaking, ugly cries.  I couldn't stop.  My baby would never have a baby.  How could that be?  It meant more to me than anything else in the world and she wouldn't experience it.  It made my heart ache. Now as time has passed, I'm unsure.  Most men with Down syndrome are sterile.  Women with Ds are capable of having children with a 50% chance of the baby having Ds.  Many of the pregnancies will end in miscarriage.  It is not up to me to judge who should and should not have a child.  I think it depends on the individual person with Down syndrome.  What is their cognitive level?  How much do they or can they comprehend?  Are they responsible?  Can they handle it?  Do they have support?  Can they handle it if the pregnancy ends in miscarriage?  Can they support having a child?  As for my particular child, as her mother I don't see it in her future anymore.  But it isn't my future.  It's hers.  No one knows what that future looks like.  Guess we will all have to wait and see. Hailey is very nurturing with babies and her dolls.  If she doesn't become a mom, I know she will make the world's best aunt...hands down!
Taking her baby for a walk
Checking on cousin Landon
Making sure cousin Landon's carseat is safe.
Making sure Landon has a bib to protect his clothes
Watching Doc McStuffins with her baby
Changing baby's diaper
Making sure her dog gets exercise
Taking her baby shopping
Those of you with children with Ds....what is your thought on this topic??

Sunday, October 27, 2013

21 Things About Hailey (31 for 21)

21 things about Hailey to honor that she has 3 copies of the 21st chromosome.

1.  She was born on her grandfather's birthday.  His name is Don.  She was supposed to be Hailey Michelle, but because they share the same birthday, they share the same name...Hailey Dawn.

2.  Hailey's eyes are both two colors:  blue with hazel spots.

3.  Hailey was a girlie girl from day 1.  She rolled over for necklace, crawled and walked for bracelets.  No joke!!  Her therapist stopped wearing jewelry after the first few months because Hailey would only focus on the bling and not what she "should" be doing.

4.  Hailey is a hoarder.  She can't have just one Little People, one book, one flashcard, or one musical instrument.  She has to carry as many as her arms can hold.

5.  Hailey has already learned to work people.  If mom tells her no, she goes straight to dad.  If Brayden won't give her part of his snack, she will wiggle up to Ian and put her arm around him.  When I say it is bedtime, she runs straight to dad and says "hug".  She snuggles into him and doesn't let go. 

6.  Hailey loves music.  She will dance in the store, in the car, in the tub, in the grocery cart and throughout the house.  Music speaks to her.  It is like the music takes over her.

7.  I truly believe people invite me to lunch, to see her over me :-)

8.  Hailey is quite independent.  She will refuse to eat pizza if you cut it up for her.  She will ask for the boys' pizza and eat the entire slice.

9.  Hailey could look at books, play with puzzles, and play with her babies for hours.  She talks to her books and points to words she knows (she will sign or say them).  She will rock her baby, cover them with blankets, feed them, and put them to bed.

10.  Hailey wakes up every morning smiling from ear to ear.

11.  Hailey hates to be restrained.  At the doctor's office, for blood work, for us to give her medicine, etc.  Many times, it does take more than one person (and yes, she is only 2).

12.  Hailey wants anything that her brothers have.  They are the world to her.  She laughs the hardest at her brothers.

13.  Hailey is sneaky.  If you are looking for something, she has probably hidden it.  She likes the trash can and house plants (she likes the toilet, but we keep the bathroom door shut)

14.  Hailey loves to help.  She likes to unload the dishwasher, help with laundry, vacuum, and this week started dusting.

15.  Hailey's favorite foods (not counting junk food...she's a junkie): bananas, avocados, and black beans.

16.  Hailey likes big dogs, but small dogs freak her out!

17.  Hailey's heart should never need surgery for her defect again. 

18.  Hailey loves people and loves for people to acknowledge her.  She walks into the Y, and will stand in front of the door until someone sees her and says hi.  She walks into the child watch room and stays at the door until one of the girls say her name.  Almost as if she has to make an "entrance".

19.  Hailey's smiles, laughter and enthusiasm is incredibly contagious and makes everyone around her stop to see what is causing so much joy. 

20.  Hailey likes to climb.  She climbs on the back of the couch, on top of the table, on the counter, on beds.  If she can't get there on her own, she knows to use a chair, stool, toy...whatever the girl can find!

21.  Hailey likes to do things she knows she shouldn't do, then yell "mom, mom, mom", until I acknowledge her.  Then I get the most mischievous grin I have ever seen.  Occasionally, I will hear "nah, nah, nah, nah".

Today we celebrated Dad's birthday.  (word to the wise...steer clear of Betty Crocker's blue icing!!!)

Saturday, October 26, 2013

Pumpkin But Not Cup?

One of the most frustrating part of having a child with a speech delay can be the consistency.  Hailey's speech is coming along.  Not fantastic, but she's doing good.  She has a bad habit (not sure if it is a habit or if it is just developmental) of leaving off the end of a word.  The "k" doesn't always make it to the end of "book" or the "s" on "shoes".

Recently, we have started hearing the end of some words.  Turtle, purple, bubble, done (this is a favorite when she doesn't want to do anything), cheese.  This week she finally said all of "cracker".  Today at speech therapy, the little stinker said "pumpkin".  Yes, pumpkin.  The entire word, beginning to end. 

Yes, I'm happy that she said the word.  I find it ironic though because every night Hailey walks to the fridge, signs milk and says "bottle".  Every night we make her say (or sign..depending on the mood) "want milk please".  What we get is "aunt bottle ease".  We say "cup" and she nods yes and says "bottle".  No matter how much we try, the girl will not say cup.  I find it funny she won't try to say cup but she will say pumpkin. 

Just another reminder, Hailey does what Hailey wants to do on Hailey's time :-)  She's been like that since birth, I don't figure it will change anytime soon!

Working on Halloween words and signs

Every time that Hailey hears the word "boo", she plays peek-a-boo.

Working on sorting foods & vehicles

She saw a ghost, so she had to say "boo"

Telling Ms K what she sees in the book.

Sorting big and little leaves

Friday, October 25, 2013

Pay It Forward (31 for 21)

I was almost at the end of topics for Down syndrome awareness month, but thanks for my fabulous friends on Facebook, I have a long list to work on over the weekend.  When Hailey was born, I had a large number of people reach out to us.  I was given names, numbers and email addresses to a great deal of friends of friends that I have never met.  Seems like everyone had been touched in their lives with an individual with Ds.  It was strange for me.  I hadn't known about any of them just a week prior.  Little by little, I contact these women and families.  I would email or message them in the late hours of the night when I was sitting up worrying about my little bundle of joy.  I would bounce ideas off of them and ask for advice.  I am very grateful for them.  Their support was invaluable!  I will never forget them.

Time passed and I started getting friend requests from people I didn't know or from people that I thought I knew.  Within minutes, I would get phone calls or emails from family and friends..."I have a friend who had a little one with Ds.  Do you mind talking to her?  Can she email you?"  I was so excited.  If I can pass on information that we have gained or experiences we have gone through, I'm paying it forward for all the greatness that I had been given.  I'll be honest, moms that have children with Ds get quite excited when other babies are born with Ds.  We will always have a special spot in our hearts for them.  They are the cuddliest, cutest babies in the world.  Their low muscle tone makes them curl into your body and you could snuggle for hours with them.  We know the magic that will follow.

A friend of mine recently had a new niece with Down syndrome.  She sent me a message thanking me for sharing Hailey with them.  That Hailey had already impacted their lives and they were grateful for that.  It brought tears to my eyes.  I'm so happy that I could pay it forward.  I hope we can continue doing so.

Modeling her Halloween pjs

I love winter, footed pjs!