3/21 -- World Down Syndrome Day!

     Today, March 21st, is World Down Syndrome Day.  It is always a bittersweet day for me.  Sweet because I celebrate the absolute gift that Emeline is to my life, but bitter because I know that the  population of individuals with Down Syndrome is shrinking rapidly, thanks to early detection and the horror of abortion.  Bitter because I realize that over 90% of mothers who receive a diagnosis of Down Syndrome for the child they are carrying make the conscious choice that they would rather not have the child than have a child with Down Syndrome, it absolutely breaks my heart. It devastates me. "Why?"  you may be wondering.  "Why would you care?  It's someone else's child."  Not withstanding the fact that abortion breaks the heart of God, first and foremost, it breaks my heart because statistics like that demonstrate how little value my child's life is perceived to have by the world at large.  And having her in my life, I KNOW that that perception could not be more wrong. For the record, Emeline would still be a gift even if she did not have Down Syndrome.  The fact that she IS, is the gift----NOT that she has Down Syndrome.

 

A t-shirt I had made for Emeline that says

"My Designer Genes are fearfully and wonderfully made!"

 

     Emeline does not define Down Syndrome, nor does Down Syndrome define Emeline.  But the fact is, she does have Down Syndrome.  She was born with that extra (third) copy of genetic material on her 21st chromosome (which is why World Down Syndrome Day is celebrated on 3/21!), and that extra genetic material is what is responsible for all of the trademark descriptors by which many people who have DS can be identified:  very distinct facial features including a flat face, a small broad nose, abnormally shaped ears, a large tongue, and upward slanting eyes with small folds of skin in the corners.  In addition to the visible physical features, Emeline also has several medical challenges that people with Down syndrome have an increased risk of developing: GI problems, heart defects, vision problems, hearing loss, and speech-related delays. While Emeline does not have hypothyroidism, which is very common in individuals with DS, she does have other endocrinological problems (hypoparathyroidism, adrenal insufficiency, and salt wasting).  Other health challenges more common to people who have Down Syndrome are leukemia and chronic respiratory infections.
People with Down Syndrome almost always exhibit some level of mental retardation; children with Down syndrome usually develop more slowly than their peers, and have trouble learning to walk, talk, and take care of themselves.  That is not to say that they can not do it; but it does take them longer. Emeline has been no exception to this rule. 

     All of these health-and-development-related challenges can be exhausting in and of themselves. Add in the socially challenging issues that come with having Down Syndrome, and life can indeed be daunting at times.  Having a visible disability is both a blessing, and a curse.  It is a blessing when individuals notice that a person has Down Syndrome and extend grace in the form of extra patience, but it is a curse when the opposite occurs.  Not everyone is willing to wait that extra few seconds for a person with Down Syndrome to respond to a question; patience is a virtue that not everyone has.  The derogatory word "retard" and phrase "That's so retarded" have been such a bane to individuals with cognitive impairments (and those who love them!) that there has been a concentrated effort called "Spread the Word to End the Word" that hopes to eradicate the use of such hurtful language.  Discrimination against those with disabilties still goes on.  Even in Emeline's young life, she has been discriminated against because of her disability, because she has Down Syndrome.  Last year I called to inquire about a dance/tumbling class for Emeline, and the owner/instructor was more than happy to add another student to her troupe until I mentioned that Emeline had Down Syndrome.  I had asked early in the conversation if the instructor was comfortable working with kids with disabilities.  She gushed about how they'd had many kids with disabilities through the years, and how it definitely was NOT a problem.  I breathed an conscious sigh of relief and went on with my other questions.  At the end of the conversation I mentioned how glad I was to have found this class, because with Emeline having Down Syndrome, physical therapy had been a part of our life since she was born, and since she had been released from physical therapy, I was looking for some movement-related activity to keep her active, and this seemed like the perfect opportunity. The immediate silence that followed was stifling.  I waited, and waited, until finally I said, my voice wavering as tears threatened to spill, "Wait a minute.  Is Down Syndrome a problem?"  To which she immediately replied, "You find 5 or 6 other kids with Down Syndrome, and we'll have a class just for them."  I was stunned.  I said, "But you said earlier that you were comfortable working with kids with disabilities." To which she replied, "Yes, but it's not fair to the other kids to have someone with Down Syndrome in their class."  This person had never met Emeline, yet based solely on the fact that Emeline has a diagnosis of Down Syndrome, she had already determined that she was not going to succeed in a class with her typical peers.  This, exactly this, is why we have an on-going need for Down Syndrome advocacy and awareness.  With early intervention, therapies, and new research, kids with Down Syndrome are accomplishing more than their peers of the last generation.  Their future is bright, and their hopes and dreams are within reach.  As a parent of a child with Down Syndrome, my job is to educate and prepare her for the world and the future.  But it is also to prepare and educate the world for my child.  And so today, I write.

What are YOU doing to make the world a better place?  I am working on rearing one little girl who was blessed with one extra piece of genetic material who has an amazing capacity to spread joy, to encourage, to renew hope, to cause laughter, to amaze, to inspire, to motivate, to uplift, to bless,  to LOVE.  Happy World Down Syndrome Day. 

Playing Catch Up: Our Virginia Trip, June 2012

In June, we were able to get a great deal on a trip we'd been wanting to make--to Virginia.

We've been working on the Dunham genealogy for several years now, and we needed to make a trip to the Virginia State Library and Archives to do some more research.  Em loves a trip to pretty much ANYWHERE; she loves to travel, and she really is a great traveler.

I apologize that the pictures are in a very random order (?); they do, however, give a peek into our adventures back in America's history.  We spent a day at the state Archives, and then spent a few days at Williamsburg, Yorktown, and Jamestown, enjoying all the historical information to learn about there.  We spent two days at the beach--a first for Emma.  She was absolutely enthralled with the beach.  She is insistent that we are going back this year.  (I'm afraid she's in for a bit of disappointment!)   



Starting again, and Emeline's request

Wow. So I haven't written a blog post in 9 months. If the saying goes, "Time flies when you're having fun," then I guess I am having a blast, because if you would have asked me, I would have replied in embarrassment, "Oh, it's been 2 or 3 months since I last blogged." Huh. Well, rather than lament what can't be undone, I'll just do what I *CAN* do....Try again, starting today. So here we go...

In the last few weeks, I have felt the niggling in my stomach. I have felt the need with building urgency that writing here (read that "writing here with some degree of consistency and regularity") is something I *NEED* to do. Not for me, but for Emeline. She is growing. She is changing. Growth and change are exciting, but at times they can be scary, too. Being stretched, expanding one's comfort zone is not always easy nor comfortable, but it is a part of life, and well, that's what this blog is about--Emeline and her life.

So over the next few posts, whether they show up in a matter of days or months (hopefully days!) I want to share my heart with you, but more importantly share Emeline's experiences and her heart with you.

What's new with Emeline since the last post of May, 2012? So many things! New medical challenges, a new educational setting, some new extra-curricular activities, some new friends, and some exciting growth and progress! I will update you on all of those areas in the next few days (yes, I am forcing myself into commitment here, am I not?) but for today, I want to share just one quick story.    

The other day we were out, running some errands in town and everything was fine, or so I thought. But as we were driving home, I looked in the mirror and noticed Em's eyes were full of tears. She wasn't crying, but she looked like any second the dam would break. I said, "Emma, what is wrong?" as I racked my brain, trying to remember anything that could have happened that would have upset her so. Her answer, in all of its simplicity was very profound. "People never wissen. Say how are woo, but never wissen." (Translation: "People never listen. [They] say how are you, but [they] never listen.") It has taken over 7 years for her to get to this place, a place where she not only has something to say, but she also finally has the ability to say it. And she wants to be heard. But I suspect that because her speech is still sometimes garbled and/or unclear to those unused to communicating with her, people look away and/or disengage when they don't understand her.  I completely know what she is talking about.  We can be at the grocery store and see someone we know.  Invariably, they will say, "Hi, Emma!  How are you?" and two things will happen.  One, if Em doesn't immediately begin replying, the person will initiate conversation with me, effectively cutting Emma off from responding altogether.  Or, if they DO allow time for Em to respond, quite frequently they won't understand her and instead of saying, "Could you say that again?" or "I'm sorry, I didn't understand what you said, Emma" they will immediately initiate conversation with me with, "How has she been?  How is she doing?" which again cuts her off from the opportunity to respond.  Unfortunately, as evidenced by her tears of the other day, Emeline realizes that's what is happening.
And clearly, it makes her sad.  And that makes this momma's heart sad.

So what is the point of my sharing that story?  It's certainly NOT to discourage people from talking with Emeline, or any other person with intellectual disabilities.  Emma, and others like her, are usually thrilled to be treated like everyone else and included in real life experiences, including conversation in the grocery store or at the library.  If I am there with Emma, (which 99% of the time, I am---she certainly isn't driving herself anywhere yet! LOL), I try to "translate" for the person what Emma has said, if I see that they aren't understanding her *WHEN* they give me the chance.  On a rare occasion, people do.  But a great majority of the time, people don't.  They immediately begin addressing me, and unfortunately it would feel awkward (and probably comes across as quite rude) for me to say, "Hey, may I ask you to let my girl answer your question, before you begin talking with me?" So yeah, I don't say that.  But I am blogging about it today, because it matters.  You cared enough to ask how how she was; thank you for caring enough to let her answer you.   While it may not be a big deal to you, it really does matter to a little girl who at seven years old just wants to be heard.  

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!

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."

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.

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."