Bloom...finally finished

This afternoon, while Hailey was tucked into her crib and my middle guy was playing outside with friends, I finally sat down and finished reading "Bloom" by Kelle Hampton.  I purchased the book back in April when it first hit the shelves but hadn't brought myself to read it because I wasn't sure I was ready to relive the feelings of receiving a diagnosis of Down syndrome.  I just waded through that muck 3 short months ago when Hailey turned one and I'm positive I will filter through more as we approach Hailey's 1st heart day anniversary.  Before I give my thoughts that follow reading the book, let me give a little background into Kelle to those who do not know of her.

Kelle Hampton has a beautiful little girl, Nella, who was born a little over two years ago.  She also received a birth diagnosis.  Kelle has a blog, Enjoying the Small Things.  Kelle's blog is about her life.  There are some references to Down syndrome but I think overall, there isn't much.  She is a fabulous photographer.  I was introduced to Kelle's blog when I needed it the most.  Hailey had been diagnosed, we were wading through the sea of terms and medical conditions, and nervously awaiting the date for Hailey's heart surgery.  I thought life was like a movie and our DVD was stuck on pause.  I felt that life wasn't going to go on for us and that Down syndrome and a heart defect was going to define who we were as a family.  I thought being happy or being normal wasn't going to exist.  Kelle's is very unicorn and rainbows.  There are times I wish I could be a little more like that.  Her blog was the first I was introduced to...I had never read a blog before hers.  Through her blog and the many wonderful others I found after, I realized that all my fears were just fears and not reality.

Okay...so...what did I think of "Bloom"?  It was written similar to the blog page she has about Nella's birth.  She is honest.  She admits it isn't what she wanted...or what she thought she wanted.  I think this book would be good for any new parent just receiving a diagnosis.  I think a lot of new parents need to know that they aren't they only ones that have these feelings.  That it is okay to mourn the baby you "thought" you were having...that it okay to lean on others and voice her fears...your heartache.  To know there are so many people that do understand what you are going through and you are not alone.  Did I reach acceptance as quickly as Kelle did?  Nope, not by a long shot.  We did, however, have the added stress of a 3 week NICU stay and the unknown of a heart defect.  I put dealing with Down syndrome on the back burner for a little while because we feared for our daughter's life.  It made my mourning period longer...but everyone deals with those emotions differently.   She was honest and open about how things creeped up along the way even when she thought the emotion and rawness of it all was long gone.  I definitely related to that.

It reminded me how grateful I am for our "net"...our family and friends that were there to help us in ways we didn't even realize at the time.  How they kept us from falling when the bottom fell out of our world and how they are with us as we made it to the other side.  They love our little girl (all our children) unconditionally and see them for the individuals they are.  

I think her book made me reflect on our first year with Hailey.  For instance, I know how I reacted to the news that Hailey has Down syndrome and how the family and friends that were at the hospital reacted but I never thought about asking how friends who weren't there reacted to the news.  How they felt about everything.  So I've started asking a little about that.  I know one of my sister-in-laws had a hunch before the doctor told us.  One of my friends was more concerned for Hailey's health (on cpap, feeding tube, heart defect) than Down syndrome, and another friend knew that we would step into the role of being Hailey's parents perfectly.  I have a couple more friends that I want to discuss it with but the timing has to be just right.

There are a few things in the book that I thought, "really" after I read it but then I remembered this book is a memoir.  It is her account of what happened in her life.  This is not a book of fiction with made up characters and a pretend story-line.  I'm not in a position to judge how someone handles earth-shattering news (or anything for that matter).

I am happy that Kelle has found a way to bring Down syndrome into the spotlight and show others that Down syndrome is something to celebrate and for most of us it is just a small part of our lives.

These pictures have absolutely nothing to do with the book...unless Hailey is practicing her writing skills for when she publishes her own book :-)

Disability Connection

So all day today, I have been wracking my brain about how to write this post.  I was at a lost.  I agreed to participate in a Disability Blog Hop that was put together by Meriah With a Little Moxie.  Today's topic is "tell me more about your connection with disability".  I've really struggled with this one because I don't see Hailey as disabled and others that I know with a disability don't see themselves as disabled.  Then I took a peek at Becca's post at The Bates Motel.  It hit me...I was looking at disability and disabled like they were interchangeable...they are definitely not!  Hailey has a disability but with guidance she is very able.

Once I had my head screwed on straight, I started the rest of my thought process.  I never really knew anyone with Down syndrome or a disability until I had Hailey.  Nope...that's not right.  I had a couple of classmates from school that had disabilities.  One had a heart defect similar to Hailey's, another girl had a birth defect where she was missing a couple of fingers on one hand, and another friend was involved in a terrible accident that resulted in her losing toes on both feet.  These girls were role models to everyone (and they don't even realize what they did)....they were kind, hard-working, determined, athletic women.  They didn't say "can't" and their disability stopped them from NOTHING!  I have a cousin who cannot walk or talk.  My aunt refused to put him in a facility for fear he wouldn't live.  She has dedicated her life to caring for my cousin.  She is an amazing woman who has shown me the strength and love that a mother holds for her child (long before I ever had children).  Most recently (well...before Hailey), I have a very dear friend whose son has cerebral palsy.  He is the most amazing 9 year old I have ever met.  The word "can't" is not in his vocabulary.  His mother was told he would never walk or participate in sports.  He runs and plays like every other child in the neighborhood and he plays hockey.  He is the kindest child I have ever met...he is the peacemaker...he shares...and my little Hailey seems to hold a special spot in his heart. 

Obviously, the closest connection I have with disability, is my little peanut Hailey.  Yes, she has a disability, but I truly believe given the right tools, this little girl will prove like all the other wonderful people I have met throughout my life that she is "able" and she will thrive!  I'm following in the footsteps of the past, we will work hard.  We have expectations for her...she isn't getting a pass because she has Down syndrome...I'm not telling her she "can't" because she has Down syndrome. 

Little by little, I think society is starting to open their eyes about people with disabilities.  They are starting to see beyond the disability to see the real person.  I hope through my blog and all the other wonderful blogs...we will continue to help people see that a disability is just a trait of a person...not the entire person...and they get to know that person.  I'm positive their life will be enriched in ways they would have never dreamed!  I know mine has.

Well-check

Well check...that is what Hailey's appointment was today.  I thank God every day because overall, Hailey is healthy.  Yes, she has Down syndrome but as many others have said before and we all continue to to say, it doesn't mean she isn't well or that she is sick.  We have more doctor and specialists appointments than a lot of children with only 46 chromosomes, but most of them are preventative to stay on top of things that are common issues with children with DS....hearing, vision, thyroid checks, etc.  We want to make sure that we keep checking so in case she is having an issue, we nip it in the bud before it hinders her learning or growing.

With all that said, Hailey had her 15 month check today.  Here are the stats at 15 months:
  Height:  29 1/4"  8%
  Weight:  19 lbs 4 oz   7%
  Head circumference:  17 1/2  15%

She is still hanging onto the charts.  With the amount the girl eats...I can't believe she doesn't weigh 30 lbs, but when you are frequently climbing the stairs of a two story house, chasing your brothers from room to room and trying to see what goodies we can find on top of the couch, I guess that burns up a lot of calories :-)

Get me out of here!

  We love, love, love our pediatrician.  We chose a different pediatrician for Hailey (not due to her having DS) because of insurance issues.  We love the boys' doctor for them but Hailey's is perfect for her.  He knows that Hailey is a part of a bigger unit and spends time talking about the entire family, finding out what is going on, how things are going with therapies, her development, any issues or concerns before he starts examining her. 

Hailey was on her best behavior today.  She showed off her crawling and her standing.  The doctor made the mistake of asking about her "bottle"...Hailey jerked her head up and started looking around jabbering "ba-ba-ba-ba".  She definitely knew what he was talking about!  He continued with his standard examination.  Hailey does NOT like to be restrained...not to change her diaper...not to put on a bib...and definitely not to be examined.  She wiggled away from the stethoscope...she made faces with the tongue depressor and finally conceded with the otoscope (ears...I had to google it!).  Ears were clear, lungs and heart sounded good, everything else he poked and prodded for in her abdomen were good.  While looking in her mouth, we did get an "oh my!"...which is never a good sign!  He followed it with, "With the amount of teeth coming in, you are lucky that she only has a runny nose."  Apparently, little one is getting a set of molars, her other front tooth and a few on bottom all at the same time....doesn't that sound like fun!

What are we waiting for?

I already did patty-cake...what's next?

We go back in 3 months for another well-check and for a blood draw for her thyroid.  Hopefully she will continue to gain weight and get a little taller....maybe a little more hair while she's at it :-)

I guess these bracelets will do since you made me get shots!

Does It Get Better Than This?

I am forever grateful for all the men and women who have served and continue to serve in the armed forces to protect our freedoms.  Today especially as I enjoyed the day just hanging out with my family, I am reminded of the sacrifices they make for that freedom.

Today was predicted to be another hot day in the Midwest.  I had contemplated staying inside and finding a few activities while enjoying the air conditioning.  The boys talked me into putting up one of the kiddie pools in the backyard.  Who would have thought such a small body of water could make children so happy!  They played outside for almost 6 hours!  Midway through, Hailey needed a bottle and nap.  Mom took advantage of Hailey's nap and spread out in the shade to start reading "Bloom".  I almost made it halfway through...I'll have more about that later in the week.  I enjoyed my two hours with my book listening to the giggles and splashes coming from a few yards away.

I know I've said it many times before, but these are times I thought my family wouldn't have anymore.  I thought Hailey having Down syndrome would change this.  I'm not sure why...it doesn't seem rational thinking about it now.  Even a year ago...3 months after Hailey's diagnosis and birth, I still thought these times wouldn't exist.  Sitting with my tiny little girl who wouldn't couldn't eat, I was afraid out life would revolve around Down syndrome and her heart defect.  I'm not sure what I thought we would do...if I thought we were going to live in a constant state of mourning or what.   I'm so incredibly glad I was wrong...I hope others see this too!

As I sit here, Hailey has brought me her empty bottle and is attacking the laptop.  It is my sign that she is ready to go to sleep.  I'm off to snuggle with my peanut.  I'll leave you with some pics of the fun the children had with their little pool today!

I hope everyone was able to enjoy the day!

I think they would have had fun with it even without water!

I'm not sure what she is laughing at!

The kids trying to entice Hailey to come to them.

Hailey is not buying into it.

Hey guys, can I get in?

Hailey having a chat

Then she attacks!

Fun in the Sun

Despite the heat wave that has hit the area, we ventured out to swim for a couple hours this afternoon.  I was a little hesitant because it was Hailey's nap time and she wasn't receptive the last time she was in the pool.  Apparently the last time must have been a bad day because the girl was in love with the water today.  She was kicking, splashing, putting her face in the water and trying to crawl into water that was well over her head.  I think we are going to have to keep a close eye on this one!

Always on the move

Her buddy "N" trying to keep her from crawling awa.

Loving the water

Her new expression, "Ooooo"

I thought she would be tired...nope!

This smile melts me heart!

Hailey...the 1 year old

Sometimes my brain gets so tangled up with what's "typical"...what Hailey is developmentally behind in...what she is on target with...what we need to work on...what she has mastered that I don't "see" the big picture.  I'll be honest...on a daily basis, Hailey is the only child I see with Down syndrome and she is the only 1 year old I see.  Most of our world consists of other 5 and 8-9 year olds.  Then when we do see another 1 year old, he/she seems to be lightyears ahead of Hailey in everything and they seem to be about 5 pounds bigger.   Yes, my brain knows that all children develop at their own rate.  Yes, I realize Hailey was over 4 weeks early.  Yes, I realize she lost at least 4 weeks of gross motor due to open heart surgery (and how difficult everything was before her heart was repaired.)  And, YES, I know I am not supposed to "compare" children.  In my mind, I know all these things and they are rational.  But my heart gets a little bruised when we are around children the same age as Hailey and they are running circles around her.

Last night was different.  We were at my oldest son's end-of-season soccer party.  The parents were playing the children. I was sitting on a blanket with Hailey when I look over and see another little peanut sitting a few feet from her.  She was close to Hailey's size so I "assumed" she was about 9 months old.  I was pleasantly surprised to find out she was a little over a year...she wasn't walking but cruising.  She was crawling around, emptying the stroller basket, and happily drinking her bottle.  Hailey crawled through the grass to get to the little girl.  (I've been trying to get her to crawl through grass for 2 months!)  For those that know Hailey....it wasn't the little girl she was trying to get to....it was the bottle!

So in my long drawn out way, yesterday I had it shown to me that truly all children develop at different rates...those with 46 chromosomes and those with 47.  I, also, decided that yes, my daughter will be just fine with other children her age.

Hailey's favorite pastimes (quite similar to her brothers at this age)

• climbing the stairs (when she thinks I'm not looking)
• getting into the bathroom (when we forget to shut the door)
• emptying the diaper bag (until mom found one with a zipper)
• climbing on her brothers
• scoping the couch for goodies..remotes, Nintendo DS, phones, iPads
• stealing food from others
• eating grass and leaves
• boycotting naps

Here are some pics of Hailey just being a 1 year old:

Oh...you caught me

"More, more, more" come on boys...I want more!

Mom, they are both feeding me!

Snaggletooth enjoying her watermelon

Hmm...Ian left a snack up here.

Playing with my piggy bank while Mom and Dad work.