Can You Do More this World Down Syndrome Day?

Over the past three years, I know I have bombarded everyone with information about Down syndrome and bored everyone with pictures of my gorgeous (I'm her mom, I reserve the right to be biased), spunky, little girl with Down syndrome.  I advocate for my daughter partly because I love her, but also because I want others to realize a diagnosis is not always what you think it is.  Some things that seem daunting are misunderstood.  Some things that seem impossible just take a few adjustments.  Some things that you think will end your world, can be the best thing that has ever happened to you.

Tomorrow is March 21...aka World Down Syndrome Day.  3/21 was chosen because a person with Down syndrome has 3 copies of the 21st chromosome.

I know I've asked for acceptance and awareness before, but this time I challenge you to do more.  You can show your support by wearing blue and yellow (the colors of Ds awareness), but you can take it one step further.  Do you know someone with a disability?  Do your children have a classmate with a disability?  Can you include those individuals in an activity?  Can you go out of your way to have a conversation with them or see how their day is?  Can you volunteer in some capacity that will benefit an individual with a disability?  Sign up for a run or a walk whose funds benefit people with disabilities?  Can you bring attention to an individual that uses the r-word...ask them to find a different word?

How can you not only show people with Down syndrome that you accept them, but that you respect them?

I would love to hear what you can do!  Do it for Hailey...do it for yourself!

We will be spending our evening with our local Down syndrome families celebrating the loved ones that brought us all together. 

A Day in the Life

I'm writing this blog post as part of a blog hop for World Down Syndrome Day (which is March 21st).  I realize it sounds cliche, but honestly, our days don't look much different than they did before Hailey.  We have 3 children now instead of 2...that in itself adds a little more chaos.  Our days aren't much different than they were when Ian was 3.

I think I'll start with what our day isn't.  Our day is not sad.  I do not have a little girl who is quiet and sitting in the corner drooling.  Our day is not full of doctor's appointments.  Our days are not high maintenance.  Our days do not revolve around Hailey.  Our days are not dedicated to Down syndrome.

Our days are a little different now that Hailey has started preschool.  Our day starts getting everyone fed and making sure the boys don't miss their bus.  This week, we aren't doing well with that one.  Ian has missed his twice this week...good thing it is only a mile from home.  Hailey and I hang out at home in the mornings.  A little Doc McStuffins, a little reading, a few puzzles (a few messes and a lot of sass) and then we eat lunch before I drive her to school.  I kiss my peanut good-bye and she is off doing her thing.  I have two hours of "free" time.  I use that term loosely because it is generally running errands for the household.

By that time, Ian's bus is at home and we drive to Hailey's school for pick up.  Our evening is filled with kids playing outside (when the weather cooperates), homework, dinner and baths.  Bedtime wraps it up.  Hailey is much easier to put to bed than her brothers.  They are much higher maintenance.

So you see, our days look similar to yours.  We have boys' sports practices some days and Hailey does have doctor appointments occasionally, but we are fortunate that they are only maintenance appointments and she is rather healthy.

We vacation like other families...we go out to restaurants like other families.  My children squabble and bicker like other children and Hailey likes to pester her brothers.

Down syndrome is nothing that I expected.  It is something I didn't want.  It is something I feared.  Down syndrome is everything I didn't think it was and nothing that I thought it was.  It has challenged me in ways I didn't think I was strong enough for and it has rewarded me like nothing before.  

I'm not sure what our life would be like without Hailey.  She definitely completes our family!

Here are a few pics from Hailey's days at school....

Please check out other "A Day in the Life" blogs below:

Time for Preschool Already

Preschool....it has been daunting and overwhelming.  Meetings, evaluations, IEPs.  Some of the information was new, some was things we've been dealing with since day 1.  Some evaluations are difficult, some roll right off your back.  Sending my baby to preschool has been frightening.  3 wasn't something we even gave a thought to when she was born.  Preschool seemed so far away.  She is, in the eyes of the world, non verbal.  It's hard when you ask "How was your day" and it is answered with silence.  You are putting a great deal of faith into the hands of the teacher, the aids, the therapists and the administration.  You do your research and you make the best decision for your child and you pray for the best.  You pray that you made the right choice for your child.  It's not easy and it causes a lot of weight on your shoulders.  Do you send at 3? Do you wait?  Do you home school?  Do you choose private preschool?  Is public preschool the best fit?  A lot of planning and thinking and praying go into that decision and yes, it was only for preschool. 

Hailey started preschool on Thursday.  The day after she turned 3.  A year earlier than her oldest brother and 3 months earlier than the other.  I was nervous and I was scared.  I tried to hide it from her.  She seemed excited.  We have been watching signing times school video for the last few weeks.  It talks about the teacher, students and paying attention.  Hailey was in love with her backpack and loves seeing the bus pull up outside picking up and dropping off her brothers.

The first day, the OT met us at the front door and led us into the classroom before anyone else came in.  Hopefully to get Hailey acclimated to room before the chaos of the rest of the class filing in.  Hailey was apprehensive and cried a little.  I left at that point.  I wasn't helping the situation.  We received a good report that evening.  The tears stopped shortly after mom left the room.  Friday, she went again.  This time with no apprehension and no tears.  Whew...mom couldn't have handled more tears.  This week will be her first full week.  I'm crossing my fingers :-)  For the record...mom hasn't cried...yet.

She wore her backpack through the house for the past week

All ready for school

Coming out to the car

Happy Birthday Hailey!

I'm a little behind on this post, but honestly, Hailey turning 3, Hailey starting preschool and me turning 40 in a span of 6 days is a lot for anyone to process.  Hailey's birthday always comes with a lot of emotions and a lot of reflection.  We weren't positive those first 24 hours if she was going to make it.  Her lungs were weak and full of fluid.  We didn't know how strong her heart was and we had been steamrolled with a Down syndrome diagnosis.  The past two birthdays, I cried.  The deep, soul cleansing sobs.  I didn't have that this year.  I've forgiven myself for my reaction to her having Down syndrome.  As I've said before, I was uneducated about Ds, but never once was it an issue that I didn't love my daughter.  Just like the boys, she had a firm hold on my heart long before she made her debut into the world.

Her birthday was low key this year.  We celebrated a couple of times before her birthday (once with each side of the family) and then the 5 of us on her actual birthday. It is so fascinating to see the changes in her this year.  She had just started walking last year for her birthday.  Didn't seem too interested in presents, but did love her cake.  This year, she knew exactly what the presents were and who they were for.  She tried opening them...several times throughout the day.  She sings Happy Birthday with us and beams when we said her name.  She even blew out the candles. 

I will have to say, who ever came up with the term "Terrible Twos" didn't make it to 3 yet.  Hailey has been a monster child since Wednesday.  Her favorite place is her brother's loft bed.  Yes, great motor skills in climbing the ladder but a good way to give her mother a heart attack.  She now thinks she can use scissors for anything and everything she wants to open (yes, the scissors have been moved to higher ground).  We had our first massive tantrum in church this week.  Her nickname Hurricane doesn't quite seem destructive enough.  The boys both went through similar "issues" when they turned 3 so I will be looking forward to it taming itself a little!

Here are a few (maybe more than a few) pics of Hailey celebrating her 3rd birthday.

Hailey & mom spent the day with Hailey doing whatever she wanted to.

Doc Hailey gave me a full check up.

The nice worker in the bakery dept gave her two cookies.  He knew the way to her heart!

 

Trying to steal some icing.

Singing Happy Birthday

The best we could do with this crew

Landon was quite happy with his cake

She likes presents

Every outfit she received she had to hold up and say "pretty"

Hailey is not a fan of "less is more"

Hailey with her doll Ellie who also sports an extra chromosome

Blowing out her candles, but it looks like she is giving mom the stink eye

Healthy Heart, Happy Mom

I was quite anxious about Hailey's cardiology appointment this morning.  I had a hard time sleeping last night.  It is an irrational fear because her heart has been repaired.  Hailey is relatively healthy.  Knock on wood.  Her vision is good, her hearing is good, she's growing, she's on the growth charts, her heart is good, her thyroid is good (that we know of...she has a blood test coming up), and she eats good.  I think when Hailey was born and I read books on Down syndrome.  They always listed all the medical conditions that your child with Ds "could" have.  I think in the back of my mind, I always feel like we are teetering on the edge of a cliff and at any minute a doctor will give us bad news at an appointment and we will be free falling off of that cliff.

I do love our cardio appointments because our doctor is fabulous about being on time!  We arrived 15 minutes early and were called back 5 minutes before our appointment.  Hailey has always hated doctor appointments...EVER appointment.  First came height and weight.  Not a single tear...not a single arched back.  There was a "friend" from Child Life that was with us armed with an iPad.  Hailey didn't seem too interested at first because she was too busy trying to figure out what the nurse was doing to her.  Then came time for pulse ox.  We have never gotten a good reading on the first try.  There have even been appointments where they gave up because Hailey never cooperated and didn't show any signs of distress.  100 first try!  Woot! Woot!

We tried her right hand, but apparently that didn't work because she wanted to use her right hand on the ipad, so we switched!

 The appointment was going so well that I was afraid of what was coming next...the EKG.  Last year, we had to physically hold Hailey down and hold her arms down.  Wow, has my little girl grown up.  I'm not saying she was happy, but she was cooperative!  She gave the nurse dirty looks and didn't take her eyes off of her the entire time she covered her in leeds, but she didn't cry and she didn't pull them off!  It was funny watching Hailey's body language.  All of her therapists have always commented and complimented on Hailey's posture...she slouched so much trying to make sure they couldn't attach them to her.

Keeping an eye on them.

Totally avoiding the ipad...only focused on the nurse

Did you really do this to me?!?!?

 Great EKG results!  The next two photos are a little blurry, but I have to share them with you because it summarizes Hailey's doctor appointments.

After the EKG, I put her shirt back on.  She looked at me, signed and said, "All done"

She followed it with "Up, home"

Bad news...we hadn't even seen the doctor yet!  Dr. D came in within seconds of Hailey's plea to go home.  She was still very cooperative but wanted to assist the doctor with the stethoscope and then took over the stethoscope to show Dr. D how to do it.  Then in true Hailey fashion, she wanted the doctor's earrings :-)  If she could have, she would have left with the stethoscope and the earrings!  I'm not sure if watching Doc McStuffins and playing with her doctor set helped the appointment or it is because she is growing up or maybe a combination of the two, but it was a fantastic appointment!

Good news, everything looks good and we go back in a year.  At that point, if she thinks Hailey will be still for an echo, we will schedule one then or we will wait another year.

I left with a sigh of relief.  I "might" have bought Hailey a little jewelry for her birthday after we left ;-)

This last pic is just because she's cute :-)

My Littlest Valentine

Little Miss doesn't start preschool until the 27th, but her teacher extended an invitation to the class Valentine's Day party today.  It took some juggling because I also volunteered at Ian's party, but we were able to work it out.  I was a little nervous at first because Hailey seemed a little overwhelmed.  This is a little uncharacteristic of her, but Dad also had to wake her up and she is normally napping during that time span. 

She looks a little tired here

Finally at least sampling her snack

We then moved onto story time.  Hailey had a seat in a chair and seemed a little overwhelmed with all the kids all huddled together.  I convinced her to stay, but I'm not sure how much she listened.  She was too interested into everything going on around her. 

It was then onto craft time which is Hailey's favorite thing to do.  "Stickers" are a fave right now.

I hate that this picture is blurry....I had to share.  That smile melts my heart!

The other kiddos then started packing up their things to head to their car line.  The bus riders sang a couple of songs.  Hailey didn't participate, but she watched excitedly (and then decided to attack the teacher's computer and do her own "typing"). 

As the other children were leaving the classroom, Hailey decided to "read" a book.  Apparently, she was paying attention when Miss A (her speech therapist) was reading because it is the exact book she plucked from the bookcase and climbed into the rocker to "read" it.  Comically, Hailey was giving Miss A a LOT of attitude today.  Gave her the cold shoulder and looked at her like she had three heads.

Look closely at this expression....do you see the attitude she is giving Miss A?!?!

Hailey did say "jewelry" for her though...show off.  I think Hailey's speech therapist is going to be a good fit for her.  She will definitely push Hailey, but Hailey will give her attitude and make her work for it :-) 

I was happy that Hailey was able to make it to the party.  I "might" have shed a tear or two when we left because seeing her in the classroom made it all more real.  I am still scared for the transition and am apprehensive with sending my "nonverbal" 3 year old to preschool.  I am still sad that my last baby will be going off to school, but I am more positive than ever that she is going to the right place!