Monday, May 21, 2012

Emma, V.I.P

"Emma V.I.P.! Emma V.I.P!" If I heard that statement once, I heard it a hundred times that week.

The third week of April, Emeline was the V.I.P. (Very Important Person) in her Kindergarten class. (And while I see you're going there, let's have none of that "Third week of April?! This is the third week of May!" conversation. You know how awful I am at keeping up with this blogging business! :P) ANYWAY...I have no doubt in my mind that this experience--Being V.I.P--would easily place in the "Top Ten Best-Ever Events In My Life," if Em were to create such a list.

First thing in the morning, Monday morning that week, I say, "Emma, it's time to wake up."
Uninteligible mumbling. Roll over. Slap hands in mom's direction. "Go 'way!"
"Emma, it's time to wake up. It's a school day!"
Eyes pop open. Girl pops up. "Sool! Emma V.I.P. Oh, yeah! Emma V.I.P.!" And off she goes, running for the bathroom, ready and eager for the day.

3:30 p.m. I am there to pick her up. "How was school today?" I ask.
"Emma V.I.P. Good day. Emma V.I.P."

5:00 p.m. Daddy gets home. Emma runs out to meet him. "Daddy home!"
"Hi honey! How was school today?"
"Emma V.I.P. Good day! Emma V.I.P.!"
"What did you do as V.I.P. today?"
"Good day. Emma V.I.P."

5:30 p.m. Time for supper. "Whose turn is it to pray?"
"Oh! Emma pway! Emma V.I.P! Emma!"
"Okay, you can pray."

"Okay, Em, you need to eat your food."
"Oh yeah. Emma V.I.P. Emma eat. Emma V.I.P."
Daddy and I exchange glances over her head. I turn away. What can I say? She totally cracks me up sometimes! LOL

Bedtime "Emma, it's time to get jammies on. Let's go!"
"Ohhh-kay. Emma get jammies on. Emma V.I.P. 'Portant. Get jammies on. V.I.P."

"Emma, let's take your medicine."
"Emma take med'cine. Emma V.I.P. Yep. Emma take med'cine."

"Let's read a book."
"Mommy wead book Emma. Emma V.I.P."

And so the story went. Every day that week. From the moment she awoke, 'til the moment she drifted off to sleep, she relished in the joy of being V.I.P. If there's one thing this girlie knows how to do, it's savor the moment. She loved every single minute of that week, I do believe. (Have I ever mentioned how much this girlie has taught me?!?)

She loved her moment in the spotlight, and I loved watching her love it!

In preparation for being V.I.P., Emeline brought home a little book which she was to fill in and color. It was comprised of questions all about her, you know, "What is your favorite food?" "How many people are in your family?" "What is your favorite toy?" so on and so forth. So we spent time over the weekend getting her book done. Then we had to make a foot-high paper doll that would hang in her class, with the rest of the students' V.I.P. models. If you know me well at all, you will know that an artist, I am NOT. By this time, after all the time we'd spent on Em's little "All About Me" book, she was D.O.N.E. with anything requiring pencil, pen, or crayon. I couldn't even entice her with the markers! (Which are, for the record, put up, most of the time. For very good reason. But that's another story for another day. Or probably not, judging from the infrequency of updates here.) But back to the story. The paper doll. I confess; I will admit it. I made her paper doll. I did it all myself. She watched. She clapped. She cheered me on. She refused to do it herself. Oh well. It's not like they get graded for their paper doll making skills in Kindergarten! So....if you're keeping track. We had the "All About Me" book to do. Check. "This is Me" paper doll to do. Check. Woohoo! Then I got to go on a scavenger hunt. There was a whole list of things it was "suggested" Emma could bring in. "Your newborn baby picture." Dig out the baby book. Find the picture. Check. "A picture of your family." Swipe the one taken last year from the end table. Check. "A picture of your pets." Ugh. Am I really going to dig out of the box of pictures to find a picture of our Beagles, Banjo and recently deceased Candy Cane? Of course I am! Check. "A picture of you doing something you enjoy." Woohoo! There's a picture of Em at tumbling on the fridge. Grab that shot and cross one more off the list! Check. And so on and so forth. "V.I.P." may have stood for Very Important Person, but for the momma's, it also would qualify as "Very Intense Process." Unless you're one of those moms who have always kept up with stuff like baby books, pictures, and scrapbooking. If so, well, Wow. That's all I can say. If I keep up with the cooking, dishes, laundry, getting Em to her therapies and doctor's appointments, and giving her all of her meds on time every day, well that's a day worth celebrating in my book! (And a rare thing, too!!)

All that being said, here are a few pictures I took of Emeline doing her presentation for her class at the end of her V.I.P. week.





And a video, too, even! :) This is Emma sharing the "All About Me" book I wrote about earlier. Enjoy!

Wednesday, April 4, 2012

An Interview with Emeline: April 4, 2012

What is your name? "Emma Duh-mmm. Emma Iwene Duh-mmm."
How old are you? "Six."
When is your birthday? "October tenf."
Who is your mommy? "Bah-bwa."
What does mommy do? "Work. Cook Banjo meat." (Banjo is our dog.)
Who is your daddy? "Daddy."
What does daddy do? "Work. Work on my swide and chickens."
Who are your friends? "Bryson, Sophie, Blayton, Helton, Smith, Carter, Jeri, Jeri (she means Julie, Jeri's twin, LOL!), Arthur."
What is your favorite color? "Gray."
What is your favorite food to eat? "Sketti."
What is your favorite song? "Hap Birfday."
What is your favorite movie? "Sight Words."
What is your favorite book? "SpongeBob book."
What is your favorite animal? "Cocoa." (our neighbor's chocolate lab)
What is your favorite ice cream flavor? "brown"
What is your favorite toy to play with? "SpongeBob"
Where is your favorite place to eat? "Sonic--fwench fwies and pop."
Who is your favorite person? "Bryson."
Who is your best friend? "Hmm. Chicky (tricky)...Bryson."
What is your favorite thing to do? "Pway doll at school."
What do you want to be when you grow up? "Emma cwimb up ladder. Pool, then swide down. Spwash!"
Where will you live when you grow up? "Hotel."
What do Mommy and Daddy do after you go to bed? "Play."
Where do we go to church? "Bwoomfield, Iowa."
Why do we go to church? "Go to church and pway. Fravrite."

Monday, February 27, 2012

Small steps over time....

It is fun and exciting and scary at all once, watching my sweet girl growing up. She has gained SOOO much independence this year. While it occasionally poses a problem (like when she packs a bag, grabs my car keys from the mantel and says, "Bye, Mom! Emma go hotel!" and opens the front door...but, that's another story for another day...), but for the most part, this increasing independence is a WONDERFUL thing to see.

The lessons may take a while to learn, they may require lots of repetition, but she is gaining. I have learned an invaluable lesson along the way: Small steps will cover a great distance over time.

One area where Em is gaining independence is in her personal self-care, specifically, taking her meds. She has done well with this for a while. (Please know *I* still do the dispensing!!) I lay them out in the morning: 2 pills, and 3 syringes (one small, and two large), accompanied by a glass of juice with Miralax. She knows they're there, and she takes them. The nurses at school give her her meds there at lunch time, and when I pick her up from school, I have her meds lying on the counter to take when she gets home. If I don't have her fourth and final dose for the day already out when she is getting tired at night, she will say, "Mom, med-cine!" I go and fill the final 2 syringes and get out the final pill for the day, and she takes it. "All done med-cine!" she lets me know every night.
If only I'd known 4 years ago, when it was a two-parent job to hold down the screaming toddler and force the syringes into her mouth while she squirmed and fought and more often than not, spit out half of whatever we did manage to get in...Those were some hard times. I remember calling my mom more than once, in tears, saying, "I can't do this," and she always said, "Yes, you can. You don't have a choice. You WILL do it. It will get better...with time. Just get through today." And she was right. (As usual!)

Em's keeping her glasses on was another battle I thought I would *NEVER* win. She started wearing glasses at 12 months of age. People told me, "Oh, you're so lucky she got them at such a young age. She'll learn early to leave them on, and you won't have near the trouble later." Well, I don't know about that. She's six years old now, and it's only in the past month that I'd say it wasn't an on-going challenge to not only keep the glasses on her face, but to make sure the glasses weren't being deposited in the garbage, hidden in the refrigerator, stuffed in a pillowcase, dropped in the deep-freeze...the list could go on and on. (Yes, really!) Glasses have been a HUGE (though necessary) hassle. Until recently. Em has finally realized that she can see MUCH better with the glasses, than without them. First thing in the morning, that's what she's asking for, as soon as she's out of bed. And she leaves them on, all day long!

Emma is able to completely dress herself independently, as far as putting items of clothing on. We are, however, still working at tweaking the whole concept of matching. She understands the concept that if a skirt has a pattern with red in it, a plain red shirt will match it, or that any shirt she has will be okay with a pair of jeans or plain black pants. She is, however, quite adamant in her belief that anything that is striped will go with anything else that is striped. I guess she has internalized the concept that "likes go together," and when I tell her, "Stripes don't match stripes," she says, "Yes! Same!" and gets very aggravated with me. So, we clearly have a little bit still to work on, but for the most part, I can trust that when I send her to her room to get dressed, she will come out looking neat and presentable a great majority of the time. And TIME is what it took to get there. Boy oh boy, I could post over 100 pictures of some of Em's outfits from the past. There were some real doozies! But time and a lot of talking and showing and practicing and playing games and looking at books and magazines have paid off, as one more step has been made towards a little more independence and self-determination.

Emma's speech has taken off this past year. She is saying new words almost every day. While she still can be hard to understand (especially for people who aren't around her very often), and has many articulation errors, and continues to refuse to use any pronouns (except the word "me"), I am not discouraged. I see growth; I hear change. I have learned that nothing big happens overnight. It takes time, practice, and most of all, patience. She will get there. I no longer fear "if"; I know know we're just waiting for "when."

Oh how well I remember praying, working, watching, waiting for her to sit up. To crawl. To drink from a cup. To walk. Always small steps....always over time (sometimes a LONNNNGGGG time!)...but they ALL happened. She will get there. In her own time.

Perhaps the biggest change I have seen in Emma lately is the beautiful little person inside that she is becoming. While I am undeniably proud of each accomplishment, every new "thing" Emma has learned to do, I am most desirous that she learns to LIVE LOVE because she understands God's love. I am constantly challenged in my own life, constantly aware that a little pair of eyes is watching me--Seeing what I do, how I treat others, hearing how I speak to them, and she is storing it all away in her mind. When she on occasion behaves badly, I find myself asking "Did she see ME do that?!" It is my daily hope and prayer, my daily goal that she sees me living God's love in action--a care and concern for others and their physical, emotional, and spiritual well-being, not for anything I can get out of it, not for any motive or reward, other than knowing that is pleasing to God.

Last night after supper, I was in our bedroom, folding laundry, and Emmie came in. She touched my arm and said, "Mom, Kank oo mah food Emma eat. Good food. Kank oo, Mom, make mah good food." (Translation: Mom, thank you for the food I ate. It was good food. Thank you, Mom, for making my good food.") I looked at her, and walked out to where Bill was sitting in the living room. I said, "Did you send Emma back to the bedroom?" He said, "No, why?" I said, "You didn't tell her to come and tell me thank you for making supper?" Again, he replied, "No." I went back and hugged Emma and said, "Thank you, Emeline. That is very kind of you to thank me for making your supper. I really appreciate your doing that. That made me feel really good." She again said, "Kank oo." And then she was gone. Back to her room, where she was doctoring Howdy Doody yet again with bandages and tape. (Poor Howdy!)

Small steps. We'll never be the fastest, and that's okay. It may take us longer than most to get places. But we will get there. And we are finding joy in each of these small steps, each of these moments worth remembering.

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.