31 for 21: Now...What Will You Do?

Well, the time has come.  It is finally the end of October.  I have successfully completed my challenge.  I have blogged 31 days for 21...Trisomy 21(aka Down syndrome).  As everyone knows, I did it for my daughter....I would do anything for my children....just as I know, everyone would and others do for their own children.

I know to some, I am on a soapbox.  I can't apologize because I won't stop.  There is still too much ignorance in the world.  There are still too many people in the world that use the r-word.  There are too many people that don't understand how "short bus" jokes hurt.  Too many people that do not believe my daughter's life has value and that her and others like her should be aborted and eliminated from society.  I don't want my daughter growing up feeling that she doesn't belong and that she is not wanted.

This month, I have shown you how much Hailey is like her brothers and other toddlers.  I have given you links to other blogs about other children with Down syndrome.  I have been honest about my misconceptions and utter grief about Down syndrome.  I have also shared with you our joy and admiration for our daughter.

Did I change your opinion on Down syndrome or disabilities?  Did you learn more about what Ds is and what it is not?  Will you think twice when passing some one with a disability or Ds?  Will you see them as a baby, child, daughter, grand-daughter, niece, uncle...person first?  Will you remember their feelings are no different than yours or mine?

So now, I ask.....will you help us change minds?

Her spunk is back!

So glad my baby is feeling better!  Nothing made me happier today than to see this smile again!

31 for 21: Feeling as Gloomy as the Weather

Ughh...it has been a long couple of days.  I had Hailey at the doctor last week for her runny nose and congestion.  The doctor gave her an antibiotic for an ear infection.  Ironically she had the exact same thing almost a year ago to the day.  I hate giving any of my kids antibiotics, but sometimes it seems unavoidable.  So we started the antibiotic.  Hailey seemed to be doing okay except for the side effect of extra bowel movements which contributed to a very bad case of diaper rash.  Her nose was clearing up and she was her extra mischievous self.  We celebrated my husband's birthday on Saturday with dinner at a Mexican restaurant and we took the kids to see Disney on Ice (what a great daddy...spending his birthday doing all kids stuff). 

Sunday, Hailey wasn't herself.  Eating was a chore (as you can see in Hailey's pics...eating has never been an issue with her.)  She didn't even want much milk.  She laid around and wanted to be held.  She didn't play and she didn't jabber.  We had to wake her after napping for almost 4 1/2 hours.  I was up with her at 12:30 a.m....which is NOT like Hailey.  She has slept through the night every night since we stopped waking her after her open heart surgery.  She was on fire. 

Monday morning when I woke her up, she was pale and a little limp.  Sitting in her highchair attempting to eat breakfast, it seemed to take all of her energy to just hold her head up.  It was so much out of the ordinary that it had me scared...maybe even a little panicked.  I called the pediatrician's and they got us an appointment within about 30 minutes.  Fortunately, we were able to get Hailey's regular doctor.  He knows her...he knows how she acts.  He checked her out and decided to send us for x-rays to make sure that she didn't have pneumonia.  Her ears were clear, but she was running a low grade fever and still congested.  X-rays came back...good news, no pneumonia.  The verdict...the doctor thinks she picked up a virus and it needs to run its course.  Yesterday was draining.  Hailey did nothing.  She wanted held the entire day.  She didn't want to eat.  She didn't talk.  She didn't play. 

It scared me to see Hailey act that way.  I didn't have anything to compare it to.  Hailey hasn't been sick.  She's had a couple of ear infections and a few sniffles, but they never stopped her.  She kept on smiling and playing.  She couldn't tell me what was wrong.  I might have over-reacted with Hailey being sick.  I am always waiting for the other shoe to drop.  We've been so lucky so far that I'm afraid our luck will run out. 

Today, my baby returned.  Thank goodness!  Her spunk was back.  The twinkle returned to her eyes.  Her appetite was good and she drank her milk.  No fever.  She played and cackled with her brother.  My peanut was feeling much better today and I'm grateful that whatever had her down seems to be leaving.  Guess I now have something to compare other bugs to.  I know how she acts when she doesn't feel well. 

Even the littlest one likes salsa :-)

Love those dimples!

I think this is when she started to feel worse...look at those pitiful eyes.

She crashed at Disney on Ice at 8:05 p.m.

Happy birthday, Daddy!

31 for 21: It Just Is

I thought I could squeeze one more meaningful post about Down syndrome

....how fabulous my daughter is
...the high expectations we have for her
...how my heart stops anytime Hailey has breathing issues or her coloring is off, I will always worry about her heart (Eventhough I have been assured that her heart is fine.)
...how happy I am about this:  in 1929 the life expectancy for a person with Down syndrome was 9, 1983 it was 25 years old, today that life expectancy is 60 years old.
...how Hailey can make even the crankiest people smile
...how that one extra chromosome seems to affect almost every part of her body (both good and bad)
...how some people will never care that the r-word hurts others even though they aren't "aiming" it at a person with a developmental disability

But I can't.  I'm tired.  I'm exhausted.

In our day-to-day life, we do not discuss Down syndrome much.  We discuss our days.  We talk about the weather.  Sports.  Homework.  Therapy.  Meals.  Family.  Friends.  You see, Down syndrome is a part of our life, but it's just that....only a part.  It is a part of Hailey, but it does not define Hailey.  It just is.  It is there.  It will always be there.  Just like Ian is left-handed.  Just like Brayden has beautiful blue eyes.  Hailey has Down syndrome.  We've grieved over it.  We learned about it.  We dealt with it.  We love Hailey for who she is...extra chromosome and all...the good and the bad.  It doesn't paralyze us.  It doesn't make us feel embarrassed.  We don't hide from society (quite the opposite...if you've ever seen Hailey out and about...she will make sure you pay attention to her).

We have similar family struggles.  Sassy 9 year olds...5 year olds that know everything...a toddler who does what she wants, when she wants.  Juggling schedules and doing homework.  We have a few frustrations that others don't.  I have shed plenty of tears over Hailey not reaching a milestone or us working so hard to get there, but her not getting it.  I've done it over holding her head up...sitting unsupported...crawling...and most recently over walking.  It's not easy to watch your child work for 7 months on something and still be so far from achieving her goal.

But in looking at the big picture.  It's little stuff.  After your daughter has had open heart surgery and given a second chance at living, it's all little stuff.  It is just a part of life....let's live it!

Pouting because mom said "no".

Dancing to nursery rhymes on the iPad.

31 for 21: How to Explain Down Syndrome to a Child

We were faced with this dilemma when Hailey was born.  How do we explain Down syndrome to a 4 year old and an 8 year old?  Do we explain it to her brothers or do we just let them love her as their sister and never "label" her?  With the boys we decided to let it go...we didn't explain it.  She was just Hailey.  We actually didn't tell them much about Hailey's heart until the very last minute.  Both boys tend to take a lot of stuff to heart and we didn't want them to carry the burden of worrying about Hailey.  The two of us worried enough so we waited until a few weeks before her open heart surgery to explain it all to them.  Down syndrome still didn't enter the conversation until almost September before we headed to a new parent dinner with our Down syndrome association.

A friend recently asked how she explains Down syndrome to her 5 year old if he sees someone and asks about it.  The one thing we have learned with Hailey's NICU stay, open heart surgery and her diagnosis of Down syndrome, you give them as much information as they want at their age.  We started basic and let the boys lead the questions.  Depending on the child, the information you give them might be enough.

We started simple and gave the facts.  We sat them both down and commented that they both were born with blue eyes and have brown hair.  Ian was born left handed and Brayden was born right handed.  In that same regard, Hailey was born with blue eyes and has Down syndrome.  We did tell them that your body is made up of cells that has things called chromosomes.  Every cell has 46 chromosomes except with Hailey hers all have 47 chromosomes.  I think the chromosome part was better understood better by Brayden than Ian.  Hailey has to work a little harder to learn things.  It will take her a little longer to learn to crawl, walk, etc, but she will do all of it in time.  They wanted to know if she was sick and would Ds make her die.  We answered, "No."  As soon as they had their questions answered, they were content with the conversation.

In explaining to your children, why Hailey or another child with Ds does certain things or doesn't do certain things...just be honest.  Give them as much information as they need/want.  Down syndrome will cause them to learn slower and they will need to work harder to accomplish things.  Ask them to be patient with them.  We want children to know that she has the same feelings that other children have.  She will have similar interests as other children...soccer, swimming, playing with friends, etc.  Depending on the child they encounter, you might have to explain...orthotics (to help with walking), sign language, wheel chair, etc.  It takes them longer to learn how to walk, talk, run, etc.  Depending on the age, you could tell about cells and chromosomes and the extra chromosome.

Today, I decided to ask the boys what do they say if someone asks about their sister...why she doesn't walk or talk?  Ian's response was "she has Down syndrome."  I asked him what that meant and he replied, "It takes her a little longer to learn things, but that is why she goes to therapy and exercises, but she can still play with us."  To my 5 year old, that is all he needs at the moment.  Actually Brayden's response was similar.  He said, "She has Down syndrome and it makes it harder for her to learn to do stuff that is easy for most of us.  Everyone learns differently, but she's still just a kid."

So, give simple facts and let them take the lead.

One day, I will be able to take a picture of this little stinker without her saying "cheese" and squishing her entire face!

31 for 21: Lucky

to see this every day!!  There aren't as many blog readers on the weekends.  No words of wisdom.  No myths to dis spell.  Just cute pictures of Hailey for all my regular readers :-)

Waiting for Hailey's orthotics to get adjusted...she was all decked out in her Halloween gear.

31 for 21: Happy Birthday

to Dad.  In honor of Dad's birthday today...this post is only filled with pictures of Hailey with her Daddy!

Happy Birthday to the best Dad in the World!!!!

31 for 21: What About Everyone Else?

Well, I've done plenty of talking about how her immediate family feels about Hailey.  I've shared how much we adore her and admire her.  So, I asked family and friends what they love about Hailey or what makes them think of Hailey.

Here is what they have to say....

• I love her squishy face, her smile and her determination!!!! Or is that stubbornness (one thing that has nothing to do with DS) ;) 

• Her smile.  No other child in the family has that smile (and it doesn't take much to get one out of her :-)  Some how her whole face goes into that smile! 

• I don't know how to describe it, but her shy look.  I love it when she turns her head to the side and looks at you like, "I didn't do it."

I'm thinking that look is a cross between these faces...

• I adore watching my children interact with her.

•  I have never been a fan of anything with hearts on it, but since Hailey was born, my eyes are attracted and drawn to heart things, such as clothing, toys, linens, etc.  She is such a strong little girl!!

• I love how she smiles at everyone even she doesn't know them.  I love how sociable she is and how she draws attention to herself.  She is quite the comedian.

•  I love her many funny faces.

• I love that she is fearless and likes to explore.  At the same time, she seeks peace and doesn't like anger.

•  I love her smile and her personality.

• One of my nieces thinks she is cute and funny.

•  She is full of life, fun and energy.  She always has a sweet, but mischievous grin on her face to where she makes her little nose wrinkle.

• Hailey loves being in the middle of the kids playing.  She has fun and makes the most of every day.

 So you see...her dad, brothers and I aren't the only ones that absolutely adore this little girl!