The Messier the Better

We recently started introducing baby food to Hailey.  She seems to like the taste.  She opens her mouth wide when she sees the spoon.  She hasn't mastered bringing her tongue back in her mouth with the food so we place our thumb on her chin to close it.  As a result, she retracts her tongue.  Part of that is because of Down syndrome but the boys had issues with that for the first couple of weeks of feeding.  We've made it through squash and sweet potatoes and are on our last day of bananas.  She's eating only about 1/2 a jar a day but that is better than I had anticipated.  Our goal is to get through that half a jar before the raspberries start.  Sometimes that happens and other days she is covered in baby food.

Not sure about these bananas

All gone, mommy!  Feed me more!

Here comes the raspberries

I think I like them!

Since vacation, the boys have been obsessed with board games and card games.  With school and soccer, our time is more limited but we have been trying to squeeze in a game or two.  Last night we enjoyed the wonderful weather and played outside on the patio.

Hailey likes to make sure we remember she is outside with us.

I love this face!!!!

Look at the rolls our pudgy baby is getting!

She is daddy's girl

Beautifully written

I came across this poem this afternoon in another blog I follow, but it does go well with yesterday's post.  I wonder these thoughts every day we are in public with Hailey.  So many people stop and say Hi to Hailey and rave what a beautiful baby she is.  I politely say thank you and agree with them but in the back of my mind, I will always question whether they stopped because she has Down syndrome or did they stop because she truly is a beautiful baby. 



See Me For Me

When you look at me -
What do you see?

When you look into my eyes
   Do you see beautiful blue,
   sparkling with joy, delight
   in my accomplishments
Or do you see that "almond shape"
   or "brushfield spots"?

When you look at my hands
   Do you see them reaching
   for toys, writing the alphabet,
   throwing a ball, doing a
   meaningful job
Or do you see a "simian crease"?

When you look at my face
   Do you see the resemblance
   to my parents, that I have just had
   my hair permed
Or do you see a "flat face" or
   "epicanthal folds"?

When you look at my behavior
   Do you see my feelings of
   pleasure and anger, my desire
   to achieve, my frustration in
   being treated like a baby
Or do you see the "stubbornness"?

When you look at my development
   Do you see me playing with peers,
   participating in sports, growing
   into a productive adult
Or do you see "low muscle tone" or
   "the eternal child"?

When you look at my family
   Do you see loving parents wanting
   to challenge me to my ultimate potential,
   sisters and brothers who have a better
   understanding of the differences in us all?
Or do you see a family torn apart by my
   difference, constantly in crisis, unable
   to accept, never to feel the joy of
   having a "normal child"?

 

What Do You See?
Look At Me.
Look Closer.
See Me For Me.



Written by :
Donna Roll
Dedicated to
Mary Ellen Graham
Founder of the DSAGC.

Mother Hen

I started reading a wonderful book this week.  It is a collection of stories by mothers of children with Down syndrome and how their children enrich their lives.  I found this and it actually brought tears to my eyes.

Life is so generous a giver,

but we, judging its gifts

by their covering, 

cast them away as ugly

or heavy or hard.

Remove the covering 

and you will find beneath it

a living splendor,

woven by love,

with power.

~ Fra Giovanni

Hailey having Down syndrome has opened a world of fears and emotions that I never knew existed.  I worry what her life will be like as she gets older.  I wonder how hard she will have to work to learn things that come easy to the boys.  Yes, I worry about all of my children but with Hailey is different.  With the boys, I worry about their future but I don't worry as much how others will perceive them.  I worry how people will judge Hailey based on how she looks and how she is developmentally (things that she can never control).  I'm afraid that people won't get to know her...they won't see what is under the surface.  

Oh, there I go again....looking too far forward!  We have today.  We will thank God for today and take the tomorrows as they come. 

6 Months Already?

Wow!  Hard to believe that it was only six months ago that we had a whirlwind of a delivery and were handed our plump, rosy-cheeked, almond-eyed little girl that we had long ago named Hailey.  Those first couple of days are a blur, filled with lots of tears and worry.  I had never really known anyone with Down syndrome.  There were too many unknowns and too many preconceived "facts" of Down syndrome believed by some of our society.  I remember thinking how hard those first 3 weeks were while she was in the special care nursery waiting for her to come home.  St. Patrick's Day will now hold such bittersweet memories for me.  That was the wonderful day that our little peanut finally came home to her two big brothers but also the day we found out that she would need open heart surgery in the upcoming months.  The anticipation of that surgery was like a dark cloud that seemed to loom forever and follow us everywhere.  I know I worried more about it than Jason did but let's face it...I worry about everything!  Don't get me wrong, we had good moments.  It was just impossible to get the surgery and her health out of my head.  It was almost as if every plan and moment had a disclaimer on it.  I spent a great deal of time after everyone was asleep in the Arthur household, reading blogs and message boards of parents of other children with Down syndrome and children that had open heart surgery.  They all said the same thing, "The anticipation of the surgery is the hardest part".  I laughed at that comment because I thought there was no way.  Boy, they were right.  Guess I should have listened, they had been through it and knew exactly how I was feeling.

To look at Hailey now, no one could ever guess that she has been through more in her short 6 months than her entire family have in their lives.  She had a little of a bumpy start in life and she is going to have more obstacles than the boys have so far but she has proven she is one tough cookie!  She's a fighter with a sudden diva attitude.  Hailey is thriving beyond my expectations!  It has been amazing to see how much she has improved since her open heart surgery (I still get a lump in my throat saying those words...open heart surgery).  We started baby food this week.  She seems to like the taste but we have to work on getting her to keep the food in her mouth.  She wants to just stick her tongue out.  She'll get there, just like she has everything else.  She loves to be talked to and we are working on sitting.

I thank God every day for the blessings he has given us.  Hailey has opened my eyes to a world I never knew, concerns I never thought of, and understanding that there is much more to everyone than what we see on the outside.  Those dimples and laugh could melt an iceberg!

Happy 6 months my sweet peanut!  

 Here are a couple of pics of Hailey meeting her latest development milestone.  It looks sort of painful to us :-)