Friday, February 26, 2010

Rock On

Baby Bear loves to rock.  And roll.  Literally. Miss Ellie loves to listen to her Rockaby Metallica Lullaby CD, but today she is into Queen.  My cell phone "bit the dust" a few days ago and since then I have had that song in my head.  Of course when a song is in my head, I think it is appropriate to sing it out loud and get it into other people's heads.   

Yeah, what's up?  I am a tough punk rock baby.  Just chillin'.

Does anyone know who killed JR?

Ellie Bellie Bear would also like to say she is excited that Papa Charles and Grandma Dunja are coming to Austin.  Ellie thinks that Polvos or Z-Tejas is a good idea.  

Wednesday, February 24, 2010

Rollin' Rollin' Rollin'

...Keep them doggies movin'.  Rawhide!

She did it!  Ellie Bellie started rolling to the right yesterday.  Granted this took lots of prompting with toys and singing (yes, I was singing the Rawhide song), but she did it :o)  The Bear has been going through some intense developmental therapy.  While I may be a drill sergeant and while it seems that at times we are not making any progress, Ellie will surprise me with both her determination and her abilities.

I know that it may seem strange to some of you that I get so excited that she can roll over in both directions. That is okay. I do not really expect all of you to be excited.  Andrew, myself, grandparents, and our developmental therapist think all of these little achievements (ie bringing her hands to the bottle, reaching for a toy, releasing the toy, holding her head up, etc) are huge. When infants are born they have to face an onslaught of stimulation--tactile, visual, audio, smell, and taste.  They do not know how to reach accurately for an object and grab it.  They do not know how to let go of the object.  They do not know how to hold their head up.  These are all things that they must learn to do.  It requires vision, fine motor movement, gross motor movement, good muscle tone, and of course brain function.  All of these things must come together in order to achieve a physical act that we often take for granted.  Our little baby Bear-Bear has poor muscle tone, especially in the shoulders and the trunk.  To actually hold her upper body up onto her hands is very tiring and a lot of work.  (I like to think of this pose as "modified plank" in pilates.  It is really hard to do!) Ellie has to be able to fling her arm, leg, and rotate her torso in order to successfully roll over.  Again, this is very tiring and sometimes frustrating for Ellie.  Through developmental therapy, Andrew and I learn different techniques to help Ellie achieve these developmental milestones and to help her build some muscle tone.  We even have a special way we are supposed to carry her.

With Ellie being able to roll over, she now does that continuous rolling.  She will roll over and then keep on rolling. . .off of the blanket or into the crib sides.  She is so good at rolling that she can do so while being swaddled.

The Hungry Caterpillar

Even thought she can roll from front-to-back and from back-to-front, she doesn't really put it together.  Often I am woken up in the morning by a loud, talkative baby.  On the monitor I see that Ellie has broken out of the swaddle aka infant straight jacket and has rolled onto her tummy.  She then decides that she is not happy anymore on her stomach, but rather than rolling back, she screams.  And screams.  And screams.  At 5am.    Until she can put all of these movements together, I am going to need A LOT of coffee and a nap.

Monday, February 22, 2010

Heavy Weight Champ

The Bear is growing by leaps and bounds.  How big is she, you ask?  Well, you should know by now that a girl never reveals that number.   I think she is around 13.5 pounds give or take some ounces.  She is also getting extremely long.  Here I am 5'2" inches and my daughter is on the 90% for length on the DS chart!  Where did she get this height?  I am thinking the Bolte side of my mother's family, but I am not sure.

Ellie loves her bouncy chair (and so do the cats, especially Amelie).  She coos and gurgles to those plastic elephants with their beady jet black eyes.  She grabs their tails and tells them a story.  The problem is that she is almost too big for the bouncy chair.  The straps barely fit around her tummy and her feet are almost hanging off.

You are correct.  There is a puppy nose in the picture.

So today I moved the car seat straps to accommodate her length and I bought a second-hand bouncy chair that goes up to 25 pounds.  Hopefully that will last her a while.

Clothes:  I have discovered that my daughter is long in the trunk, but has short limbs.  Some of this is genetic and some of it is the DS.  Children with DS are often diagnosed as such in utero by having shorter femurs (leg) and shorter humerus (arm).  I still have to roll the cuffs on the sleeves and pant legs, the bodies of the PJs and onsies are still baggy, but I cannot snap the bottoms of the onsies.  She is too long.  So, I guess we will be moving up to 6-9 month-size clothing.

And that is why we say "Sooo Big!" when the Bear-Bear is around.
Why is Mommy trying to make me laugh?  Doesn't she know that she isn't funny?

Well, maybe I will humor her and crack a little grin.

Okay, enough already with the camera.

Friday, February 19, 2010

Actress Comments on Family Guy Episode

This is what I call a happy, blessed family.

Well no, I have not found the lyrics to "Down Syndrome Girl".  Have you by chance seen them?  If so, please pass it on to me.

Many people have been so kind to send a news article to me from The New York Times : Art Beat. It is an interview conducted with the actress who performed the voice-over for the character Ellen with Down Syndrome in the most recent, controversial Family Guy.

Based off of this article, I think that the actress is great!  She is articulate and expresses her opinions very well.  She is an inspiration and is proud to play the characters that she has been ask play.  Andrea Fray Friedman is a 39 year-old actress who just happens to have Down Syndrome.  She sheds her thoughts on the Family Guy episode from Sunday titled "Extra Large Medium".  Confused?  Please read post from earlier this week.

I would really like to hear about your insight into the episode seeing as I am somewhat conflicted.  Feel free to either comment directly onto the blog or you may email me:

Thursday, February 18, 2010

Happy Belated 5 Months Ellie!

Sorry, I have been a little side-tracked.  A plane intentionally crashed into an IRS building 15 minutes from our house at 10am today.  Pilot's house on fire 10 minutes from our home.  All of this arson and explosions had me glued to the TV and radio instead of blogging.

Moving on to talking about my favorite thing or should I say person---Andrew!  And Ellie!

Andrew is tiling the backsplash to our kitchen.  He has it 1/3 done.  Pictures soon to follow.

Milk Mouth Ellie doing the Upward-Facing-Dog & Sophie doing the Downward-Facing-Dog
(look at all that formula that she was hiding under her tongue)

Ellie turned 5 months-old on Tuesday.  She is getting to be a big girl and my back and arms can feel it.  This little monkey has a very spunky personality.

Ellie is always happy when she wakes up.  Always.  Even if I wake her up.  Who is that happy when they awaken from sleep?!  Goodness no matter what time it is or how many hours I have sawed off, I am grouchy upon waking. All of that being said, Bear-Bear does have those temperamental moments.
For instance:
1. She is hungry.  Bottle is removed from her mouth for burping.  AUGH! WAH!
2. She sees toy.  She wants toy.  Cannot figure out how to reach toy.  AUGH! WAH!
3. Bath time.  Water is dumped over head to rinse hair.  Apparently this is torture.  AUGH! WAH!
4. Unwanted tummy time.  We place Ellie on her back.  She immediately rolls to her left onto tummy.  She decides she didn't want that and does roll back.  AUGH! WAH!

The Bear has been rolling over for a while now.  However she only rolls to her left.  We are working on getting her to roll to the right by using toys at the suggestion of Ellie's developmental therapist.  This is not working.  Please refer to #2 above.

This little goose has been rolling at an angle.  She may be on one corner of the blanket and then she rolls a few times and ends up at the opposite end of the blanket and facing a completely different direction.  She does this a lot in her crib too.  I set her down on her back.  She immediately rolls to her tummy and somehow manages to turn at a 90 degree angle to the left.  Please refer to #4.

Please note the direction little Miss Sassy Pants is facing

Now look.  90 degree turn. Weight on her hands. Yay!

Angry Face--#2 & #4

Ellie is grabbing at toys infront of her now and she is putting her weight onto her hands only when in the tummy position.  She loves to make noises.  Very loud babbling.  Very loud babbling at 5am.

This was taken last week.  

Right now we are working on sitting with minimal support and pulling to sit.  Tummy time is always included along with the side lying position which she still hates.

She has very low muscle tone in the shoulders and trunk area.  This will make crawling, sitting unassisted and pulling to stand/sit very challenging.  She is sort of the opposite of other babies.  Most babies get stronger cephalocaudally--as in from the head & arms on down to the hips and legs.   Ellie has strong legs.  She loves to "stand" but she cannot pull her trunk up.  We must support her trunk because otherwise she is bent over while standing.  One thing is for sure . . .Ellie is a fighter.

Tuesday, February 16, 2010

Death by Chocolate

Well, there is really no good way to say this so I am just going to spit it out.

I am giving up chocolate for Lent. Yes, you heard me.  I am giving up chocolate.  That includes white, milk, and dark chocolate in all forms.

As it turns out, the pharmaceutical insert for nortriptyline was correct in that it "increases appetite, especially for sweets".  No, they are not kidding.  M&Ms are not safe around me.  I have been on this lovely tricyclic antidepressant for postpartum depression for about a month now.  In that time I have managed to look even more pregnant now than what I did post-partum and this is with me adopting a Zone-like diet (think glycemic index) over the past few weeks.

Has this medication helped the post-partum depression?  It has! Andrew's thought is that even though I am fat, I will at least be happy.  Um not exactly.  Is it possible to replace post-partum depression with body-insecurity-overweight depression?  It seems that the weight gain as a result of increased appetite goes to the middle and nowhere else.  No amount of baby-hefting, stroller walking, and dog/cat chasing can counteract this weight gain.  I sort of look like someone with Cushings Disease--the result of increase cortisol.  I am just waiting for the insulin-resistance to kick in.  

After increasing exercise and analyzing & modifying my diet over the past few weeks, I have discovered that chocolate seems to be my main downfall.

Step 1: Remove all forms of chocolate from house immediately.  ---Check!
Step 2: Master the art of going through grocery store and checkout lines with out purchasing chocolate--Laura help me with the will power.
Step 3: Repeat the mantra "chocolate is bad for you.  chocolate is evil".  Hum, still want the M&Ms.
Step 4: Well, I do not really have a step 4.  Help please!

By the way, Ellie Bear is 5 months old today!!!!  She is getting so big.  More on that in the next post.

Monday, February 15, 2010

"Down Syndrome Girl" in Extra Large Medium. . . the title of the most recent Family Guy episode.  I am typically a big fan of Seth MacFarlane's show and I know that it isn't exactly known for being politically correct.  All of that being said, I am not sure if I should be enraged or happy with last night's episode.
Brief background:
Lois and Peter are married.
Sons: Chris, Stewie (the baby with a British Accent)
Daughter: Meg

Last's episode featured a character with DS.  I was ready to walk out and boycott the show given it history of killing a kitty cat (still angry over that) and the insensitive jokes.  I decided to stick it out since the character had red hair like Ellie and her name was Ellen.

The character Chris tells his brother Stewie that he really likes this girl at school and that she is so pretty, but he is nervous about asking her out.  Stewie goes with Chris to the school where he gets the courage to ask Ellen out on a date.  The girl turns around and she is a chubby red-headed girl with Down Syndrome.  His little brother Stewie is shocked and of course makes some off-wall comments.

Stewie: That's the girl?
Chris: Yeah, isn't she special?
Stewie: That's the way the state of Rhode Island would put it. There's something up with her, isn't there?
Chris: Yeah, she has down syndrome.
Stewie: Okay, well there we go.
Chris: She's so sweet and doesn't she have the beautiful eyes?
Stewie: Well, the spacing seems a tad off, but individually they're not awful. 

I actually thought it was good that Chris treated her just like any other girl.  He looked past the syndrome and saw a cute, nice girl in his class that he really wanted a relationship with. The episode was also good in that it showed school inclusion for special needs children.  So I am shocked to say that at this point I am actually impressed with Seth MacFarlane's take on DS.

Later on in the episode, Chris takes Ellen to dinner.  Here Ellen demands respect  by requesting that Chris holds the chair out for her and that he ask her questions rather than just talking about himself.  I like that it showed Ellen had courage and that she knew she deserved respect. So I am still okay with Family Guy.

Then I get a little peeved, but mainly because Ellen turns out to be a not so nice girl.  I am a little upset that her character isn't likable, but then Chris says something amazing "I thought that you were different, but you are just like everyone else!" with regards to her rudeness towards him and he runs off upset that his date was a disaster.  Here is show that often pokes fun at race, religion and what not, but it actually demonstrated that teens with DS are indeed like other teens and not always "happy".  It showed that people can look at those with DS and see the person, not the label or disability.  For once this show treated a character as a person, not just a vehicle for jokes.  (aside from Ellen saying that her mother is the ex-governer of Alaska--a pretty cheap shot if you ask me)

As with most Family Guy episodes there is a huge musical number with Chris and Stewie titled "Down Syndrome Girl".  I could not catch all of the lyrics, but there were some stereotypical beliefs such as "always happy" and whatnot.  This caused me to then google for the lyrics to decide if I really should boycott Family Guy.  What I found was something horrible.

While Family Guy did an okay job in portraying a character with DS, I learned that there are still very many ignorant, narrow-minded, insensitive people out there.  While I did not find the lyrics, which I soon hope will be available, I did find many offensive comments from the show's viewers.  Things like "it was so hilarious that he wanted to date a retard."

Ah the dreaded "R" word.  This then brought me to the National Down Syndrome Society's (NDSS) webpage and position statement on the "R" word.  Retard.  The use of retard, in my opinion is a perfectly acceptable word when used clinically--ie developmental retardation, mental retardation, retarded growth.  All of which mean delayed or stunted. I am NOT okay with retard being used to make fun of others or to make fun of themselves like "I am so retarded" or "what are you? An F*^@ing retard!" It is so hard for me to believe that the world is full of so many insensitive people.  Granted many of the comments that I saw were from ignorant, narrow-minded teens but eventually Ellie may be thrown into school with these types of kids.  It is so frustrating.  I know that I cannot protect her from everything.  Ellie will need to master life's trials.  Yet I hope that name-calling with the "R" word is not one of them.

A child with Down Syndrome is born 1 out of every 700 live births (more frequently if you count the aborted babies).  Many of us have encountered 700 people over our lifetime.  That means everyone should have met someone with DS and should be able to appreciate them as a person.  We still have a long way to go.

Oh and the "Extra Large Medium" most likely refers to Peter thinking he is psychic.

Still, has Seth MacFarlane gone too far? At this point, I think he did pretty well.  However, I still need to see the lyrics to that song.

NDSS' position statement on the "R" Word.

Use of the "R" Word
NDSS uses and encourages the use of person first language (i.e. 'a child with Down syndrome').  NDSS exclusively uses and encourages the use of the socially acceptable term "intellectual disability."
NDSS strongly condemns the use of the word "retarded" in any derogatory or inappropriate context.  People with disabilities, like all people, deserve to be treated as valued citizens and not referred to in a hurtful manner for any purpose.  Using the 'R word' is hurtful and suggests that people with disabilities are not competent.  Negative and inaccurate public perceptions are the greatest barriers the National Down Syndrome Society faces in achieving acceptance and inclusion of people with Down syndrome and other cognitive disabilities.

Here is a picture of a father who loves his baby girl.

You can view episodes of Family Guy on the Fox website or at

Sunday, February 14, 2010

Friday, February 12, 2010

The Drunken Box Stitch: Sewing Part 1

I forgot to take Sewing 101.  I even didn't take Home Economics at my high school.  Yet here I am trudging my beautiful, but flawed Singer Inspiration 4210 to sewing group the 2nd Thursday of each month.

Sewing is thought to be a lost art.  According to the Merriam-Webster dictionary online, "sew" is the verb for uniting or fastening things.  This art is thought to go back as far as Paleolithic times as in 30,000 BC.   Sewing is actually an acquired skill that is needed for important occupations such as taxidermy and shoemaking.  The act of using a needle and thread dates back to 12th Century.

Needless to say I am not sitting around with a bone needle and animal sinew for thread.  Yuck.  Although I do some pretty sloppy hand stitching (hey, I am short so I need to hem a lot) and some adequate cross-stitching, I have moved on to a sewing machine.

Starting in the 1750s many patent for mechanical sewing machines were developed.  Many of these machines did not functional as anticipated.  The first functional sewing machine, as in one that actually worked, occurred in the 1830's.  Finally in the 1850s Isaac Singer invented a machine that worked and it had a needled that moved up & down by using a foot pedal.  Guess what, our machines to this day still use a foot pedal.  Only we can now plug these puppies in the outlet.

Gone are the days of machines that were simple in nature.  Now there are machines with fancy gadgets, 200 different types of programable stitches, and monograming.  That means there are more things to go wrong.  For instance, my Singer ended up in repair just a few weeks after buying it--something to do with timing.  I was trying to make burp clothes for my baby while 9 months pregnant and the needle kept breaking. (Apparently I was nesting because after I freaked out about not being able to finish the burp clothes, I went into labor).  Now I have a needle tension issues along with bobbin winding problems.  Singer has always been a trusted brand. My mom has an awesome singer from the 1970s. My friend has a Singer that was her grandmother's.  So if those ancient (sorry Mom!) machines still work wonderfully, why is my new, shiny, pretty machine working so poorly?  As with anything, money is involved.  Okay, maybe not.  The repair shop informed me that the Singer name was recently bought by a different company and hence the change in quality.

I do not fancy myself a seamstress.  However, there is a stitch among our little sewing group know as "the drunken box stitch".  The creator: me.  It isn't exactly something to be proud of seeing as I referred to this horrible, out of sync stitching on a tote bag I was making.  Box stitching is a stitch that well, looks like a box or square with an X in the middle.  These stitches are great for attaching handles onto the body of a bag--it makes it strong.   My box stitches do not even look like boxes.  Here I have a machine that allows for a straight seam and I cannot even sew straight.  Can I blame my astigmatism on my inability to sew in a straight line?  Actually, I think it is because I gab too much and get distracted.

Now the real question is:  What do you know about Brother & Bernina?  Any recommendations?

Thursday, February 11, 2010

And to the vet we go. . .again

Sophie, the Princess of the Puppy Paw Paws

Cute and innocent, right?  Not so!

Just when you think medical bills are finally paid off there are vet bills.

Cute, yes.  Innocent.  Nope.  Lovable.  Most of the time. Stupid.  Occasionally & heading towards mostly.

Sophie, our adorable, fun loving, people-pleasing border collie is the bane of my existence.  She barks at everyone and everything in spite of all of our different training techniques. She jumps up on everyone which is risky for injuries.  She tried to "play" with Amelie by sitting on her.  Apparently, she eats carpet.  Yes, I said carpet.  Well, technically it is a rug.

We have or should I say had this rather lovely coffee-colored wool runner from Pottery Barn by our side door that is in the kitchen.  Sophie loves to sit by that door and sleep and look outside and bark at the neighbors.  A few days ago she ate a quarter-sized patch of that runner.  She basically chewed the corner off.  She managed to excrete (via both ends) most of that over the past few days.  Now she has me worried sick.

I shall back up.

1 year 3 days ago our beloved Rodeo passed away unexpectedly.  He started off with vomiting bile and then had frank blood coming out the other end.  Xrays were normal as per the vet.  We were told to monitor and keep hydrated.  He died within 24 hours.  I do not think Andrew and I are past his death.  Dogs, albeit animals can truly be a trusted companion and a good friend.  He was our baby.  A part of our family.
Rodeo, the Puppy Dog Puppy Prince dressed for our wedding

So here we are 1 year 2 days later and puppy Sophie starts in with the vomiting and diarrhea.  She spent most of yesterday at the vet for observation and IV fluids.  Stool cultures were normal.  Blood work normal.  Xrays normal.  She eats small amounts of bland food 3 times while at the vet.  She is sent home on a bland diet.  Last night she refuses food and we had to take Sophie out almost every 1-2 hours due to bowel issues. There were several accidents and crate cleanings throughout the night even thought Andrew and I took her out in shifts.  Seriously, I got up less with Ellie when she was a newborn.  By morning I was at my wits' end because she wasn't getting any better.  Andrew called the vet and she said to hold the food for 12 hours and push fluids.  The vet told us that it may take a few days for the gut to settle after she expelled the carpet chunk.

Being my usual high-strung anxious self, I continued to freak out. I was reliving the entire Rodeo ordeal even though Sophie's symptoms are different and definitely tied to eating a non-edible object.

Fast-forward to this afternoon.  Sophie is now passing mucus and blood and not playing.  Repeat freaking out and I demand to see the vet.

Diagnosis:  intestinal colitis due to ingested foreign object, stress & the subsequent release of toxic spores.

Uh right.

In a nutshell:
Sophie ate the carpet.  The carpet caused the gut to become inflamed.  The inflammation triggered the proliferation of Clostridium (a normal occurring bacteria in the gut that is now multiplying and releasing toxins), thus causing the blood and continued diarrhea.

Treatment: small amounts of bland food for 3 days.  Water.  Antibiotic for the Clostridium.

Result: Sophie is refusing the bland food.  She wants her old food.  Sophie took the antibiotic thinking it was a treat.  Amelie ate Sophie's bland food.  Amelie vomits all over the kitchen due to hairball.  Tama is my only furbaby that is pooping and peeing where she is supposed to be.
Amelie = trouble

I am still stress, worried, and freaking out.  I know how to assess, diagnose and treat humans, but I know nothing about dogs.  Oh Sophie why are you so stupid little puppy?
Sophie, pre-illness

Tuesday, February 9, 2010

The Many Faces of Ellie

I thought I would just show a little leg.

This is my "thoughtful" look.

What? Who me?

Waz up?

These fingers are very tasty.

Hum . . . Let me think about it and I 'll get back to you.

Nom. Nom.

I'm so happy.  So happy.

Monday, February 8, 2010

Butterflies for Change

My friend who is a speech pathologist had the honor of attending a conference a few weeks ago.  At this conference Bridget Brown, a keynote motivational speaker, spoke about & promoted school inclusion for children with disabilities.  Bridget Brown is a 23 year-old woman with Down Syndrome.  She presents workshops designed for young adults with regards to person-centered planning, school inclusion, and managing the art of living (think day-to-day life skills like making change, doing laundry, etc).  She also works for the University of Illinois at the Chicago campus as a Dental Health Educator and assists her father in his dental office.  Bridget Brown embodies the "the Upside of Downs".  She shows that the sky is the limit and even that is questionable.  So maybe the stars are the limit?

The link below is her website: Butterflies for Change.  Take the extra 1 minute and 20 seconds to see her inspirational video.

Let us continue to advocate for children with disabilities and to encourage the school systems  to include and accommodate children with autism, Down Syndrome, and other disabilities.

Saturday, February 6, 2010

The Puzzling Jig-Saw

According to Ellie Bellie, Queen of the Bear-Bears

My auntie Megan left me to go home to the snow in Philly.  I do not know where that is, but Mommy said that they have a large broken bell and a Rocky statue.  I thought all statues were made out of rocks.   Auntie Megan said that she got fuel for the snowblower and that Matt needs to shovel the driveway.  I do not know what this snow is.  We do not have it in Austin, Texas.  Mommy says that Texas is a desert and is hot.

My Awa Grandma is here now.  She reads stories to me about Amelie & Tama kitties.  She also sings fun songs about Personal Penguins.  She said that Davy Jones sang the penguin song first and the he is a Monkee.  Funny, he doesn't look like a monkey.

I really like to roll over onto my tummy now.  I always roll to my left because it is easy for me.  It is so much fun because then I can lift my head up high and reach for puppy toys and burp clothes.  I enjoy talking to my cow toy and the lady bug.  They do not talk back though.  It is so much fun until Mommy puts me in this side-lying position on my right.  I very much dislike the side lying position so I tell her by crying.  I don't think she hears very well so then I cry even louder.

My Daddy is really busy working in the kitchen and the garage.  He has these tiles that he is gluing to the wall.  Mommy said it is a backsplash and that she has been waiting 3 years for this.  My Daddy may be sticking things to the wall but he always has time to feed me and talk to me.

Well, Mommy wants her computer back and she said something about a nap. . . not sure how I feel about that.


Note: Personal Penguin written by Sandra Boyton and performed by Davy Jones (from the Monkees)
Play song for free at

Tuesday, February 2, 2010

Ellie Bear of Mine

Ellie Marie at 12 hours old.

For approximately nine months you visualize what your baby will be like.  Which parent will they resemble the most (obviously Andrew), what types of things they will enjoy, what it will be like for her to marry, will she be a Longhorn or a Fighting Quaker, and will she grow up being close friends with Grace.

Then a miraculous thing called birth happens and out pops this most beautiful being you have ever seen.  Her first cry is a miracle.  You call the family and tell them the joyous news.  Then you start to worry.  How can I take care of this tiny being?  What if I drop her?  What if her head flops?

After that, you hear what you suspected.  "I think your daughter has Down Syndrome".  Whoosh!  Just like that you start thinking about all of the things that are associated with Down Syndrome.  The heart issues, the mental retardation, people staring at your child.  Then you feel horrible that your little girl must endure so many medical tests.  You want to take that pain for them. Then you make those phones calls of "We have a baby girl!  But, she has Down Syndrome".  Just like that everything you thought about for the previous 9 months starts to disappear.  You celebrate the child you have, but you mourn for the idea of the child that never existed.

Ellie is 4 months old now.  She is a wonder and beautiful baby.  However sometimes thoughts/emotions hit me like a truck.  It completely catches me off guard. I see a child Ellie's age in Target and I think "why did that family get the normal child?"  I do not even know this family or what troubles they have.  I see families with multiple kids--how come all of theirs are "normal" and my one & only child has Down Syndrome?  I see how wonderful and smart Ellie is and then I think about what would she have been like without that extra chromosome?  Well, I do know this: She would not be Ellie.  She would not be the Ellie that we all know and love.

I know that these thoughts are normal. . .well at least people have told me so.  Do not think that I love Ellie less due to Down Syndrome.  I love her all the more.  My little baby is a miracle who has brought so much joy to me, Andrew, my family, and friends.  She is a blessing from above.  She is brave and endures those painful & frequent medical tests/visits like a champ.  She is a happy, "talkative" baby with a smile that lights up her entire face.  I would not trade her for anything and yet, I still sometimes feel like shouting "It was not supposed to be this way!"  Actually, it is supposed to be this way.

Dedicated to Ellie (to the music of Sandra Boynton's Snuggle Puppy lyrics modified):

Well, I want just to tell you and will not take long.
The way I feel about you is kind of a song.
It starts with an "oooh"
And it ends with a kiss (smooch)
All along the middle it goes something like this.

Oooh, Ellie Bear of mine.
Everything about you is especially fine.
I love who you are.
I love what you do.

A snuggle little Ellie Bear-Bear I love you.

I say ooh, Ellie Bear of mine.
Everything about you is especially fine.
I love who you are.
I love what you do.

A snuggle little Ellie Bear-Bear I love you.

Well, I wanted just to tell you and it didn't take long.
The way I feel about you is kind of a song.
I started with an "oooh"
And I gave you a kiss (smooch)
I hope you liked the middle
Now we'll end like this.

Oooh, Ellie Bear of mine.
Everything about you is especially fine.
I love who you are.
I love what you do.

A snuggle little Ellie Bear-Bear I love you.

Ooh, I love you. (smooch)

Monday, February 1, 2010

Southern Living

Martha Stewart, Paula Deen, Gordan Ramsey, and Betty Crocker are all in my kitchen.  Only they go by the name of Megan Abbott. And no, this is not a Kitchen Nightmare!  It is Better Homes & Gardens or Iron Chef.

Megan is married to Matt who just happens to be from England. Megan loves to cook.  She now loves to cook British meals.  Andrew and I love to eat.  We now love to eat British meals.  Ellie likes to watch Megan cook.

First a little lesson in British:

crisps = fries
pudding = dessert
digestive biscuits = cookies
cheesed =  pissed
cow gum  = rubber cement  (I just thought this one was rather funny)

We have broken out the china and had a delightful 3 course meal complete with apricot-glazed bread & butter pudding.  Plus she made homemade potato crisps.

A mask for kids with Down syndrome

Do you hear crickets?  Yes, we are here!  We are alive!  We are safe and healthy!  We haven't been inside a restaurant or store since m...