Am I Embarassed by Hailey?

A couple of weeks ago right before I headed in the car to pick up Hailey from preschool, I caught this blog post from Ellen Stumbo.  It struck me hard.  It hurt hard...all the way to my soul.  I cried....all the way to her preschool.  I couldn't stop.  I guess it has been a long time since I even thought about what others think of Hailey while we are out.  Yes, we still get pity looks every now and then, but for the most part, she gets smiles and positive interactions.  I can't believe people believe that I would be embarrassed by my daughter.

Of all the words that come to mind, embarrassment is not one of them.  Love, admiration, pride, joy...those are the words that come to mind when I think of Hailey.  I love her just as much as we do the boys.  I admire her determination, her unconditional love, her joy.

The pride I feel for her is overwhelming sometimes.  She fought so hard to breathe and eat with her heart defect.  She rocked her open heart surgery.

With low muscle tone, every gross motor milestone she achieves takes much more work and effort than it does for a typical child, but yet...she NEVER gives up.  Low muscle tone also plays a role in speaking.  Slowly but surely she is forming clearer words every day.  The girl never quits.

Oh, the joy.  Her smile lights a room and her laughter is contagious.  She brings so much joy to everyone around her.   

So, no...embarrassment has no place in our life..not in our world.  So, when you see me out and about...don't wonder.  I am not embarrassed by my child.  You might want to smile and walk away quickly because I am probably going to talk your ear off about how fantastic she is.

How could anyone possibly be embarrassed by this beautiful little girl?

Easter

Easter was low-key this year.  We stayed in town this year.  Ian had baseball on Saturday and Jason had to work Easter morning.  The boys casted their vote for Easter dinner and we hung out at home all day.  The weather was gorgeous.  They hunted eggs and saw the Easter bunny.  It was a nice day. 

Hailey and I went to the spring social with our local Ds group.  You have to love an event where you are greeted with "There are plenty of high school girls to help.  Have a seat, they will take care of Hailey."  Love my daughter, but they didn't have to tell me twice.  Hailey had a ball running around playing and I got to visit with other families."  Last year, Hailey was still a little wobbly on her feet and did so-so with her egg hunts.  This year, wow!  What a change a year made!!  I loved watching her chase after those eggs with such enthusiasm. 

Now, the egg dyeing was a nightmare.  She loved it, but wow...we need to work on "gentle"!!!!  We had lots of color everywhere.

The boys humored me with a "quick" egg dyeing session.  They even paused to for a pic.  They were in a hurry to head outside to play with their friends.  

Everything stopped once Hailey found her Olaf book!

My babies.  My Easter miracle was that Hailey didn't have to be removed from church yesterday...thank goodness!

Ian is a tail first bunny eater.

Hailey was quick to shove it in her mouth.  Maybe she was afraid I would take her "chocolate" away :-)

Down syndrome...the Afterthought

Each year of Hailey's life has been so incredibly difference.  Year 1, started with an explosion of emotion...fear, denial, sadness and guilt.  All of those eventually passed and evolved into relief (after a successful, uneventful open heart surgery) and acceptance.  Her first birthday party brought a lot of tears.  We had made it.  We made it through the abundance of information about different facets of Ds, the therapy and the multitude of doctor and therapy appointments that we had never encountered through with the boys, and finding where we fit in the Down syndrome community.  It was as if we were wearing a medal of honor.  We did it. 

Hailey's second year calmed down some.  We still had appointments, but they had slowed down because fortunately she had been healthy.  She was walking with assistance and gaining independence.  We still had therapy frequently.  That birthday was a celebration.  The fear was gone.  We found our niche in the Ds community and the dust had settled so to speak. 

Year 3 was even better.  Hailey was walking and exploring her world.  Knock on wood, she was healthier than the year before with the help of allergy medicine.  Hailey's speech started to improve and she was interacting more with her brothers.  She was finding her niche in our family.  Her 3rd birthday just was.  We celebrated Hailey and where our family is. 

That first year had me so scared and overwhelmed that I didn't think there would ever be a day that I didn't see Down syndrome in her face.  I was afraid that every minute of every day would scream "I have a daughter with Down syndrome".  I thought it would consume every thought and every activity that we did.  I feared it would overtake our family.  I was so scared that every part of Hailey's personality would revolve around Down syndrome.

The past two years have been much more relaxed (or I have chilled out and started to enjoy life more).  I love seeing the personality that is emerging from that petite body.  I have had several people comment how much personality is busting from this little girl.  She is compassionate.  She sobs when someone else is hurt or upset...almost more than she cries when she is hurt.  She is nurturing.  She still takes such good care of her babies.  Feeding them, rocking them, singing to them and reading books to them. 

She loves her family. 

Just recently, I caught Hailey "introducing" all of her family members to her Doc doll and her bunny chair.  One by one, she went through each picture announcing who it was and nodding at her "audience" and saying "right?"  She is funny and inquisitive. 

Showing her "audience" her family

She is funny, rotten, sassy and mischievous!

She is so much fun and so frustrating at the same time.  But I can guarantee, when I look at this beautiful phase...Down syndrome is not what we see.  We see our beautiful 3 year old...this face just screams Hailey!

Milestones

Early on we accepted that Hailey would meet some milestones later than the boys did or other children her age.  It eventually become no big deal.  Recently Hailey has met another milestone.  We transitioned Hailey from her crib to a toddler bed and now into a full-sized bed.  Yes, this was about a year later than we transitioned the boys.  Did we do this because of Down syndrome...nope!  It had absolutely nothing to do with it.  Both boys were fabulous sleepers in their cribs (eventually).  We transitioned them into toddler beds and all hell broke loose.  With both boys, we ended up with them in our bed for at least a year off and on.  Sometimes they would start in our bed and with our middle child, he would wander into our room in the middle of the night and neither of us had the energy or the wits at 3 a.m. to move him into his bed so a bad habit was created.  Hailey stayed in her crib longer because we learned our lesson!  She is a good sleeper (knock on wood) and I wanted to get as much use out of that crib as we possibly could!

About two weeks before Christmas, I took off the side of her crib to make it into a toddler bed.  It never seemed to phase Hailey.  She continued to sleep fine.  Unfortunately she came down with croup the end of February.  This changed all sleeping for several nights.  Hailey and I kicked the boys out of Ian's room.  I slept with her for those few nights.  That is when we decided she needed a bigger bed in case one of us needed to lay with her.  She is now in a full-size bed.  Some evenings we do have issues getting her to sleep, but some of that is the over-exhaustion, some stubbornness and some the bed.  Once she is asleep we don;t hear anything from her.  Knock on wood....she is still in her bed and not in ours!!!  I have my fingers crossed that this transition/milestone is over :-)

She really liked the addition of her Doc McStuffins comforter!!

School and Hailey....are they a good fit?

Hard to believe that Hailey has been in school now for almost two months.  What scared me so much has just become part of our routine...part of our every day schedule.  Hailey seems to enjoy school.  She plays shy every day when the teacher comes to get her out of the van.  She covers her eyes, but her hands can't seem to hide her giant smile.  She breaks out in that same giant smile every day when we come to school to pick her up.  I'm not sure I will ever tire of seeing that smile and hearing her squeal "mommy" as she runs towards me.

A couple of days, I've been greeted by her physical therapist and her speech therapist.  Her physical therapist told me what a delight Hailey is.  No matter what the task is Hailey tries her hardest to master it.  She might not be able to do it, but she always tries.  I always get nervous when a therapist or teacher is waiting for me after school.  Almost as if I'm the student again and I'm in trouble with the principal!  It makes me so happy to hear how cooperative Hailey has been with her physical therapist.  Now, the road to success for speech therapy has not been as smooth.  Hailey decided she didn't need to speak to her speech therapist.  Hailey is fine if she gets to lead the activity, but if her speech therapist tries to redirect her, Hailey glares at her and doesn't speak again.  Can you say "attitude overload"?  Somehow and some way, they made a breakthrough last week.  Thank goodness!  Hailey almost didn't want to go home with me and kept hugging her speech therapist.  Yay!!!!  So exciting to actually speak to a speech therapist!!

Let's see...lastly, that leaves Hailey's teacher.  Hailey made her work for it.  For a little bit, Hailey wouldn't speak to her either.  One day, instead of eating her snack (animal crackers), Hailey sat in her seat and signed each animal to her teacher.  Little by little, Hailey is opening up and speaking with her teacher.  I sometimes worry about how much Hailey is taking in (who doesn't wonder how much even their typical children are absorbing!).  I won't spell out word for word what her teacher told me, but she said that Hailey is a very well behaved student and is a good listener and she would take 100 Haileys.  She has been following directions with some adult prompting, but not much.  She is getting the hang of the schedule and how things work.  She seems to be understanding what is going on and is always taking everything in.  It has helped ease my mind. 
I know she has her moments, but it makes me feel better knowing that Hailey is doing well even if she isn't as verbal as we would like.

At home, we haven't noticed many changes in Hailey's behavior due to school.  It is a challenge as the evening wears on because Hailey is in dire need of a nap every day and with afternoon school she misses it.  Fortunately, next year we will have morning class so that solves that problem!!  The biggest change we have noticed is in her speech.  She still isn't consistent with two word phrases (we get a few here and there), but her single words are becoming clearer and clearer with most having correct beginning and ending sounds.

So, I guess our leap of faith with preschool has been a good thing!  She seems to like it and they seem to enjoy having her.

I really think Hailey is trying to plan an escape, but her teacher insists that Hailey enjoyed it!

Looks like an escape to me!!

Hailey loved the "animal clinic" center!

World Down Syndrome Day

Yes, I realize this post is about a month overdue, but I decided I needed to share the pics anyway.  Hailey didn't wear her Ds Day shirt this year because it happened to be the same day as her preschool pics.  Well, after looking at the end result....I wish I would have sent her in her shirt.

Gotta love the "who are you, you want me to do what?" look on her face.  Needless to say...we chalk this one up to a loss and decided to not purchase any.  Oh well...maybe next year will be better!!

We spent the evening with our local Down syndrome group.  A local community center held a fantastic event...swimming, activities in the gym, manicures, dancing, dramakinetics, and plenty of fellowship.  I even got a little break because a friend's daughter is absolutely in love with Hailey and spent the evening chasing her every where.  We need to clone her and let me keep one version of Sami  :-)

Apparently, Hailey plays with scooters at school because she knew exactly what to do!

Little thing...she even tried to play basketball with her brothers

This cracks me up...Hailey decided the storage basket on someone's stroller was the perfect place to have a seat!

Hailey fell in love with one of the family's service dog.  Interesting fact:  small dogs freak Hailey out, but she loves large dogs.

She's a little unsure of the parachute.

If you can't tell, Hailey loves Sami, too!!

 I have to admit...this isn't the road I dreamed we would be on, but I wouldn't change a single minute of it!