Tuesday, January 24, 2012

An interview with Emeline, 5 years, 3 months old, January 10, 2011

Here is yet another never-before-posted blog entry I found, from
January 10, 2011. Em was 5 years and 3 months old at the time.

What is your name? "Emma."
How old are you? "Five." (Held up five fingers.)
When is your birthday? "Oc-(pause)to-(pause)ber 10."
Who is your mommy? "Home."
What does mommy do? "Mom Home."
Who is your daddy? "Dad."
What does daddy do? "Home."
Who are your friends? "Luke."
What is your favorite color? "Blue.Red.Green" (I said which one do you like the best? She answered, "Yes. Blue.Red.Green.")
What is your favorite food to eat? Pah-cone (Popcorn)
What is your favorite song? "Bible."
What is your favorite movie? "Bob-Bob" (SpongeBob)
What is your favorite book? No answer.
What is your favorite animal? "Brown."
What is your favorite ice cream flavor? "Pahpole." (Purple)
What are your favorite toys to play with? "Shirt"
Where is your favorite place to eat? "Food"
Who is your favorite person? "John"
Who is your best friend? "Luke. "Papa"
What is your favorite thing to do? No answer.
What do you want to be when you grow up? No answer.
Where will you live when you grow up? "Home."
What do Mommy and Daddy do after you go to bed? "Night-night."
Where do we go to church? "Church. Papa."
Why do we go to church? "Church. Why."

Coe Feet, or No Crying over Socks!

Before you get too impressed with the volume of posts I have for today,
let me tell you that I am going through my posts and kicking myself for the number of half-finished blog posts there are.

Here is one from April, 2011. I have no idea why I never posted it...

Emeline is obsessed with feet. Cold feet, specifically.
More often than not, I am bare-footed. Em frequently will
disappear into my bedroom and come out with a pair of socks,
and hand them to me, "Mom, Coe Feet." At that point, she wants
me to immediately sit down and put the socks on. It doesn't matter
if I'm stirring something on the stove, or cleaning the bathtub,
or whatever--cold feet rank right up there with national emergencies
in her book, apparently. And waiting 5 minutes to warm those tootsies
up is waiting 5 minutes too long.

Sometimes, I will humor her, and put the socks on, because my feet
actually are cold. LOL Other times, they aren't. Some times, I
just don't want to have socks on. So I won't put them on. I will
ask her to go and put the socks back in my room, because I don't want
to wear socks right then. You'd think I was telling her we were
giving each of her precious SpongeBob characters away or something,
she gets so upset. "Mom, no coe feet, Mom. Peas No coe feet."
She has even been known to cry, in her earnest and very sincere desire to protect my feet from the chill. I tell her, "This is NOT something that it is okay to cry over; this is SOCKS we're talking about here. I will have NO CRYING OVER SOCKS in this house!" And then I stop, and stand there, giggling at the utter ridiculousness that mommies sometimes hear themselves saying.

Emeline's 6th Birthday!


As we always have, we celebrated Emeline's 6th birthday with a birthday party at Grandma and Grandpa's house in Illinois.
Emeline's favorite movie for several months now has been "Peter Pan" (or, as she pronounces it, "Pee-nah Pay-an), so we chose to go with that for her party's theme.
I searched and searched, but never did find a single shirt with Peter Pan on it. Apparently Tinkerbell is the only marketable character from that movie. LOL When I showed Emeline the Tink shirt I'd bought for her, she
said, "Ew. No sanks. No yike Tink. Tink bad guhl. Onwy wike Peenah Payan." (Translation: Ew. No thanks. I don't like Tink. Tink is a bad girl. I only like Peter Pan.) It took a few minutes of talking, but I finally convinced her to put the shirt on.
Aunt Joy made (or had made?) a Peter Pan hat for Em.
She LOVED it!
Mommy is no "Cake Boss", but Emeline was happy with her birthday cakes.
We had pixie sticks (Everyone needs a little pixie dust now and then!)
and of course, Em's favorite, M&M's, along with our cake, ice cream, and punch.
I was getting ready to cut into the cake when Em reminded me, "Mom! Emma
no bwow candles out!" OOPS! Good thing she was paying attention! LOL
Em and her good buddy, Justin. (Or, as Em calls him, "Jut-tin")
This last picture would have been precious to me anyway, but it became
even more so in December, when we said goodbye to our dear old friend Bob.
He and Lois have been dear to me all of my life, and they are like "great-grandparents" to Emeline. Last year, it was our good friend Joe Coley whose absence was felt at Em's birthday party. Next year, Bob's presence will certainly be missed.
And that's the end of the birthday pictures for this year. I had some more of Em opening presents, but of course, almost all of them are blurry. A photographer I am NOT.

I can't believe how quickly the time has past! It doesn't seem all that long ago, when Em was turning 5; I can hardly believe she's 6 already! And I know 7 is just around the corner. I *must* do better at writing down more of our "daily adventures." (Because if you know Emeline at all, pretty much EVERY day is an adventure!!!) Birthdays are fun times to remember and look back on, but every day has moments I don't want to forget. Every day has Moments Worth Remembering.

"You May Not Be So Lucky Next Time"

Argle-Bargle. I started this post on 10/04/11, and just got finished editing it. I *hoped* blogger would post it in the (date) order in which it was written, but no such luck! Oh well. It's only fitting that my crazy-mixed-up life is appropriately reflected by a crazy-mixed-up blog! LOL

Yesterday Emeline had an appointment with a geneticist at U of I Hospitals and Clinics. It was our first time meeting this man, but I wasn't too concerned about the appointment. Em's cardiologist had asked me to schedule it this summer; he said it would be helpful, so I did. (Honestly, it wasn't. We already see enough specialists for Em's specific issues; this doctor didn't tell me anything new to watch for that I didn't already know. Or that Emma hasn't already been diagnosed with.)

In the course of the visit, he examined Emma and asked me lots of questions. At one point, he asked if Emma was an only child. I told him yes. He said, "That's probably wise of you." I then told him, "Oh, it's not by choice. We would love to have more children, but sometimes wanting a child isn't enough." His next look was one of pity, and he said, "You may wish for a child that is different than this, that does not have such health concerns..." and I'm pretty sure that at that point, my instantly-red face clued him in that he had just gone TOO far. I interrupted him and said, "*THIS* child is perfect as she is. She is fearfully and wonderfully made, EXACTLY how God intended her to be, and that includes Down Syndrome, Addison's Disease, and every other health challenge she lives with." He said, "You misunderstand me. I only meant that, given your age and your already having one child with Trisomy 21, statistically, your chances are higher of having another one. And who would want to take that chance?" I said, "Well, *I* would, and my husband would, too. I think at that point he maybe was starting to see that this conversation was not going well. He continued, "But you don't understand. Your child is still young. There are many more, much harder things still ahead. And I can already see that although she is progressing well, she will never be independent. She will never live alone." Looking back, I really should have just gotten up and left the appointment then and there. Seriously.
When a doctor thinks he can know the future of a 5 year old, he is too far gone, as far as I'm concerned. Talk about having a God-complex!

At that point, I interjected, "You know, clearly we don't see eye-to-eye on this, so maybe we should just get back to discussing Emeline." He said, "That's fine, but I just want to be very sure you understand that the reality is, you may not be so lucky next time. While she has some challenges, another child with Down Syndrome may be much worse." Wow. Thanks, doc. (Nope, that title doesn't even deserve the capital D this time, as far as I'm concerned.)

I just looked at Emma, playing on the hospital table with the Polly Pockets the Child Life Specialist had brought in for her. She had surprised me when she said, as soon as we walked into the examining room, "I want Pockets." I was confused for a minute, and then remembered that when we were there for another appointment last month, that's what she had played with. One encounter, but she remembered what they were called, and wanted to play with them again. And figured, "Hey, if I ask, they might let me have them again."

This child, who has not always been the fastest to progress, even amoung her peers with Down Syndrome, has come so far. Yes, she may not have crawled until she was 18 months, or walked until she was 3 and a half. Yes, she still may not speak very clearly, but the effort is there. And the desire is there. And, given time, it will come, just as the crawling and walking did. A little slower, but you know, nobody cares anymore that she wasn't crawling at 1 or walking at 3. She's walking now. And some day she will have so much to tell these doctors who look at her and see nothing but Down Syndrome.

If only their "education" didn't get in the way of seeing what's REALLY there. A child who loves without holding back, who senses in an uncanny way when someone near her is hurting or sad, who laughs and smiles and giggles with such joy that anyone near her can't help but do the same. If only they saw HER, and not Down Syndrome.

ETA: Coming back to edit...I absolutely do not want to paint all doctors with the same broad brush stroke, and I fear this entry may have sounded that way. *THIS* particular doctor we saw that day was so condescending, so pity-full, so arrogant in the way he spoke with me; clearly, I was very upset. But I must say that we are blessed to have SO many other wonderful doctors that work with Emeline, who are positive, encouraging, understanding, and hope-full. I do not have the words to adequately say how thankful we are, and appreciative, of the excellent care they have always provided, frequently going "above and beyond" to insure that our girl is given every chance to enjoy life in spite of her health challenges. We are nothing but BLESSED.

Wednesday, January 11, 2012

Before I can start the new year, can I PLEASE finish up the old?

In the scale of ranking the importance of pictures, "first day of school" are ones on the higher end (for me). So of course I was frustrated when I couldn't find the ones I was SURE I had taken. But here we are, in January (well, it was December when I found the memory card), FINALLY uploading Em's first day of school pictures. (Okay, so I uploaded several, but I'm only posting one here.) This is from August 24, 2011. My big, bad KINDERGARTENER.