Just because.

A day late and a dollar short (for Wordless / Special Exposure Wednesday), but I downloaded late, late last night and felt the need to share today (Thursday). Just look at the expression on Elliot’s face! And Dad? Well, not so much!

Magic Marker Monday - Circle by Elliot

Well, Grandma helped a bit with the actual circle, but he did hold the crayon. And, he made a scribble or two. Way to go, my almost two year old!

A lovely woman and self advocate

I am pleased to introduce you to a very insightful young woman and self advocate for Down syndrome. Jessica can be found here. Do drop by and say hello. Simply stated, WHAT AN INSPIRATION. God bless you, Jessica!

For our Little Artistes!

Well, as it is Tuesday, this is not applicable. But, as Wee E created his first masterpiece yesterday at Grandma’s, I will wait patiently to post it next Monday. What a neat idea. Check it out at 5 Minutes for Special Needs, a wonderful new blog. Happy day to all.

My memory is cruel.

He’s almost two. He nearly died and he’s almost two. Why, facing another birthday, a festive event, does it all flood back?

I tell myself all the words he indisputably “meant” to say. Not this:

The form of Down syndrome that he more than likely has is called Trisomy 21, and it accounts for about 95% of Ds cases. We have ordered a karyotype. The “error” occurred right at conception and probably, because of your age, Michelle, your egg…well, your egg…”

“You see… now (mind you, I waited all flipping day to “see” as they would not transfer me to the hospital NICU where Elliot waited without an ambulance and um…they were backed up) he has a small head, his ears are low set, he has a short nose, very poor tone, this crease, that crease and well, look at his eyes.”

“He may have hearing loss, vision issues, gastrointestinal abnormality, an increased frequency of respiratory and ear infections, colds, bronchitis, and pneumonia.”

“He will be mentally retarded, and his heart…well, we had better get cardiology over here ASAP.”

The neonatologist went on to say, “Did you undergo an amnio?”

“No.”

“Well, then you would have known.”

Known what? I faded away from the room and all I saw when I closed my eyes was this dreadful man. Then, I looked at my wee little premature creature, all 4 pounds of him. I was tongue tied, but I managed to say, “His name is Elliot James.”

“Use his name, please.”

The “James” comes from my OB – my pro-life OB who hugged me many times that day.

Why is my memory so malicious? Why can’t I forget the really bad things about that day? Why are there so many physicians who advocate for abortion when Down syndrome is detected? Why, in God’s name, when I was obviously in a state of shock, could this damned neonatologist not use his name?

There was one nurse, one nurse in particular, who was different. She was our advocate. I equate this one particular nurse with all of the kindness in the world. She told me over and over again that it really would be okay. She said that they would not let him go until we were comfortable taking him home. She was not there when we were dismissed - only an associate of hers. She, by the way, is Elliot's Godmother.

I have finished my BSN application. I am going to go back to school. I hope to God that HE gives me one chance to be in the room when a diagnosis of Down syndrome is given to a mother, to a set of parents, to anyone. I hope HE lets me take care of a premature infant; I hope HE gives me the chance to tell the neonatologists that “No, this mother / father is not ready to take care of this sweet baby at home.” “The baby cannot be sent home yet.” “The baby is too fragile.”

I can hope. As brutal as my memory is, it certainly serves a purpose.

Starbucks, dear Starbucks...

Well, this is completely off topic, other than the fact that I hit the Starbucks line bright and early every morning before I headed to the NICU two years ago…for COFFEE. Being the coffee aficionado that I am, I had to comment. Starbucks has now introduced a line of “SMOOTHIES!”

Um…what? They have jumped right on the “blender bandwagon” as the article stated, introducing their nourishing breakfast option. Again, what? I go to Starbucks for coffee…nothing else…coffee. I go to a Juice Stop for a fruit smoothie. Who really walks into a Starbucks store for something other than coffee? I do realize that McDonalds, Taco Bell and even Dunkin’ Donuts now offer a smoothie of sorts, but why the heck did Starbucks have to do it too? Stick to the basics, Starbucks. They are good at coffee. Darn market demands anyway. Darn economy; darn it that they had to go and do this. I am a big brand strategy person and to me this is a blatant deviation from their beloved strategy. They are also offering a multitude of discounts and coupons, and in the past, this would be loathed by the brand. Fine though. I’ll take a coupon for my special order: a triple latté with a little extra foam, but not a full blown cappuccino. The whole thing though makes me want to go local and simply drink a less than fantastic cup of coffee. Whatever. Like I said, OFF TOPIC!

Wordless Wednesday - Oldie but Goodie...

To think, he's almost two. For more WWs, click here.

Now this...

Yes, this, made my heart happy. I cannot wait to receive my copy.

Quiet.

I have learned to listen through silence. I am good at deducing gestures: the flutter of an eyelash, the wave of a hand.

I have become an expert at interpreting cries: high pitched, low pitched, and here we sit---somewhere lost between the lines. I will remain between the lines with Elliot until he can speak, perhaps just a word or two. Really, I bet that I will always be in that special place with him…interpreting, as if he was a little boy trying to communicate in a far away country.

My attention to detail is unmatched. I will consistently defend intentions when he fails. “Well, yes, that sound means xxx.” “This sound means xxx.”

For he tries; he tries so damn hard, but nothing comes out. His little body tenses up and he moves his mouth, but nothing. Nothing but a drone (if that). The sign language “lessons” from me – Momma – seem to be in vein. I try so hard.

I know. He’s a boy. He’s also a boy with Down syndrome. I hear it all of the time. Boys are slower to speak. Boys with Down syndrome? Well…please, please Elliot…please just say something.

We mastered “up” a few weeks ago.

But, it’s gone. Mysteriously, the word has left his vocabulary.

We had a great Fourth of July. A really great day. But today I sit here and I work with him. Depressed. I forgot about it all yesterday. I forgot the liver enzymes. I forgot it all. Today, (at least this afternoon) it’s back.

Maybe tomorrow?

Happy Day!

We had a fantastic day yesterday. Elliot’s Godmother invited us over for a cul-de-sac block party of sorts. They had everything from an underground pool, to piñatas for the kids, a margarita machine and loads of BBQ. Elliot was finally able to experience his first swim and he was totally captivated by the pool. Yes, he has always loved bath time, but a bath tub the size of a back yard? Look out!

We later retreated home, to join our neighbors in the display. Isaac had quite enough pool and sun (and I had too many margaritas). To my astonishment, both boys stayed up past dark and were not bothered at all with the pops and clamor.

Of course, as in typical Nora fashion, she woke up at 2:30 a.m. and vomited. Her poor tummy can never handle more than just a little junk food. Despite that, however, we had the best Independence Day ever!

Happy Independence Day!

Was this photo actually taken one year ago today?

Wow – how my boy has grown. Of course, after I gather all three, I’ll update with current photos from today’s festivities.

Festivities, of course, which I can now partake in. For the last two years, on the Fourth of July, I have been pregnant: 7 months with Elliot in 2006 and 6 months with Isaac in 2007~ CRAZY! Of course, I never carried full-term with both of them. Elliot – born at 32 weeks; Isaac at 36.

And this year, no babe in my tummy. Instead two in my arms! Loving life!

Happy day to all.

Elliot - dear Elliot.

Hepatitis A…B…C are out. But, that’s all I know.

Elliot sleeps – and sleeps – and drones – and will not eat. I’m mad and that’s all I know.

The physicians think that I am senseless. All that they say is, “I know; you’re a mom.” I’m a mom, but I am not a stupid mom and I am not one of those women who questions just for the sake of questioning.

More when I “know.”

Wordless Wednesday - The life of Riley...I mean Nora!

For more WWs, click here.