Thanksgiving past

   Ray and I remodeled an old house once.... and made it look older. We gutted rooms, tore out ceilings, spent our professional drywall budget on new wiring and learned how to drywall ourselves, but when we were done, it looked great!   
   Then we sold it, moved into a finished house and have had no home projects since!

An electrician's nightmare

 

Mud on

Mud off

  




Emily helps

Living room completed!

Thanksgiving, 2006

Our Family 2006
Emily, Seth, Anne, Ray, Christina and Noah, Kelly

              Little did we know that this would be our last Thanksgiving together. Lessons in life:  Treasure every moment.  Don't put off  till tomorrow what you can do today.  Make a memory.  Hold precious those you love.  Because tomorrow is not guaranteed. 



                                                   

Balance

   A couple of weeks ago, I passed a rose bush.  It still had the remnants of a rose on it.  A jolt ran through me as I realized that summer was gone.  Sure, I'd done the summer things: the garden, the mowing, the sweating. But I hadn't stopped to smell the roses.  I'd  'busied' through another season.
  That was the great thing about Emily.  She saw the world through simple eyes.  My priorities are upside down in comparison to hers.  The "here and now" was what was important to Emily.  I spend my days getting things ready for the "what's next" and the "just in case" and I miss the present. I rationalize that someone's got to take care of business.
    Emily put the balance in my life. How I miss that girl.

Under a parachute with new friends

at a Girl Scout activity.

At the mall where Emily's class  signed songs

in American Sign Language. (Her primary language)

                                           

Halloween and Ed Johnson

   When I was a kid,  we  did the Halloween costumes, trick-or-treat thing.  But when I became a parent,  I just didn't see the sense in it.  I know alot of people have a hang up about Halloween and  philosphizing and religion-izing.  That's not it.  We just didn't do it.  But even though we didn't participate, we always had treats for others who came knocking on our door.
    Emily loved, I mean loved, to give gifts.  One time, my mom gave her a small stuffed animal and Emily immediately said "Give to Cayley."  It hurt my mom's feelings, that Emily would think so little of the gift that she would give it away, but the reality was that Emily thought so much of Cayley, that she saw the gift as a way to bless to her friend.
   So in that sense, Halloween was one of her favorite days.  Emily had so much fun giving out candy to the kids who came to the house. 
   One year, our neighbor, Ed, brought his kids over for trick-or-treating and asked, not accusingly, but genuinely curiously, why Emily didn't go out on Halloween.  I tried to explain, but really didn't have a solid answer.  That was that, or so I thought.
   Next year, Ed and his kids came over on Halloween and Emily passed out the candy, as excited as ever to be able to give.  Ed, (and it makes me cry even now as I write, because he was so kind to remember and to think about her)   brought over a bag of candy to give to Emily.
   She was so excited to receive that candy.  She danced around and acted like she'd never, ever, been given a gift of anything. She gave Ed a big hug.   But the crazy thing about Em, when the next batch of kids came to the door, she promptly gave that bag of candy away.  Somehow, she could see that the real gift isn't in HAVING a thing, the real gift is in the act of GIVING a thing  And she gave out of a heart of love.
  

Pappa Coonie's turtle story

     It all started in the summer of 2002.  Murl (AKA Pappa Coonie)  & Louise live on a edge of a pond.  In the spring, they were blessed with newly hatched ducklings.  But, one by one, turtles would pull the ducklings under the water to drown and eat them.  Murl was itching to get himself a turtle.
   Now, Louise had a ceramic turtle in her rock garden , and for a laugh, Ray put that turtle, as a decoy, on a log at the edge of the pond.
   When Murl got home and saw that turtle in the distance, he pulled out his rifle and shot it, not once, but twice, straight through the chest, exiting through the tail.  He was SO excited that he'd gotten a turtle.

 

 So started the legend of 'Precious, the turtle'.  I'll share just a few highlights of that turtle's life.

   'Precious, the turtle' has been auctioned off to the highest bidder at many of the family Christmas auctions, and has lived, for the following year, at each of the sibling's homes.  He was kidnapped & held for ransom, enduring 17 long days of captivity before being return unharmed. (the FBI got curious about those e-mails)  He was an honored guest at Murl & Louise's 50th anniversary celebration.  He found love with Myrtle, the Turtle on New Year's eve 2004.  Sadly, that relationship ended on Valentines day, 2005 with an introduction to a break-dancing turtle named Lucianda Maria Antoinette Delasantos. I could go on and on.
   Turtle inuendos still pop up anywhere, any time the Mileur's get together. 

    Another Mileur family tradition is the 'Annual Lessor Scaup 4th of July, Boat Regatta and Birthday celebration"!  Everybody creates a boat, and everybody gets an award!  The Legend of Precious the Turtle and the Annual Boat Regatta  became entwined several times.  Just look.

2005 -  Emily's boat  - "Please don't shoot me"

Award -  "Coonie's favorite"

 

2008 - our grandson Noah's boat - "The moving target"

Award - "Best kid's boat"

 

2008 - Monique's boat - "Turtles on Strike"

Award - Pappa Coonie's favorite"

 

2009 - Deb's boat " Grand Coonie Isle Turtle Farm"

Award - "Pappa Coonie's favorite"

 

   None of this would be funny if Murl had not been able to laugh at himself.  If it had been my father who had been in that original situation, who had mistakenly shot a ceramic turtle, the story would have had a very different ending.  It would not have been funny at all.  I wonder, what makes one person able to laugh during a situation, and another person angry?

 

    

 

Horse back riding and life skills

   What girl doesn't like horses?  Emily was no different in that aspect.  She loved horses, and had no fear, even when I thought she should have a little fear.  I'd heard that horseback riding had been shown to improve balance, muscle tone, and self confidence in kids with disabilities, I set out to find "equine therapy".  At the time, I worked with Terri Walker, who told me that her mother,  Sandy Crutcher, boarded horses and had hired a trainer to give private lessons.  "No," Sandy told me, "We don't do therapy, we just teach kids how to ride."  Neither she or I knew how it would go, but we agreed to take it one week, one lesson, at a time.  Thursday afternoon was Emily's day and she learned the days of the week on a calendar by waiting for Thursday to come around. 
  For the life of me, I can't remember the name of the trainer. I think it was Mitzi.  Anyway, she was perfect for Emily.  Stong handed enough to keep Emily reined in when she needed it and wise enough to let Emily go when it was safe to let her be on her own.  And the horse, he was huge but he had a patient and gentle spirit.  This wasn't just riding.  Em learned how to feed, groom and clean up after the horse.  She learned that there were responsibilities that came with the fun.  After a couple of years at Crutcher's Corner, Mitzi moved on and the lessons came to an end.

   
   It was several years later that we happened upon another opportunity for horse riding lessons for Emily.  Dave owned several horses and was willing for Emily to come ride once a week.  BlackJack was ideal for Emily.  I was more comfortble with his size and Emily took to him like an old friend.
   One day, Em decided she wanted to do more than just walk around the corral.  She kicked BlackJack in the ribs and hollored "Go."   And BlackJack did what he was told.  He took off, and Emily fell off.   Dave about had a heart attack, and started to go to Emily, but I stopped him. We watched as Emily picked herself up, dusted herself off, then ran after BlackJack.   "You get back here!"  She caught him, climbed up on the fence and climbed back in the saddle.  She was so proud of herself when she walked  BlackJack back around to where we were standing.   Emily thought she was just having fun.  But in that instance she was learning life skills of  'actions have consequences', 'problem solving', and 'independance'. 

BlackJack and Emily

                      
   Later, I learned about an equine therapy center.  I signed Emily up.  But both Emily and I left the session frustrated and disappointed.  We didn't go back.  This was not riding like Em was used to, this was being led around.  I'm sure there's a place for this type of therapy, but I am so glad that I didn't find this first when I was searching for horse-riding therapy.

                                        
   I feel such gratitude to both Mitzi and Dave for being willing to see past the disabilities of Down Syndrome and for being willing to see the abilities of Emily.  They gave her an opportunity to grow.  Instead of doing for her, they taught her to do for herself. This was no free ride. They expected her to do for herself.  And she rose to that expectation.
 
   That's a hard lesson for parents of kids with disabilities.  It's hard even for parents of typical kids.  We want to help our kids, but in doing too much for them, we actually disable them further.   I didn't think this up, but I like the quote:

                           "As a parent, it's not your job to do for your child.
                             It's your job to teach your child to do for himself."

Emily & Oma

  When Emily was born, my Mom was there.  When she was 18 months old, Emily had surgery for a diaphragmatic hernia and spent 15 days at Children's hospital, 12 of those day on a ventilator.  My Mom stayed there with me while I stayed with Emily.  All through Em's life, my Mom was there for me.  She knew first hand about raising a child with a disability.  She undersood what I was feeling.
  Mom was diagnosed with Breast cancer in  1996.  She had a mastectomy, radiation and chemo and surprised the Dr's by living in remission for 15 years. When she died, it wasn't from cancer.  I believe God let her stay here to help me raise Emily. 

Yes, that's a pair of Emily's pants on Mom's head. 

They were playing dress up.

 

Having a picnic at the zoo.

 

Mother's day luncheon,

 

A Hundred years from now,

It will not matter what my bank account was

the sort of house I lived in,

or the kind of car I drove.

 But the world may be different

because I was important

in the life of a child.

 

My mom made a difference in my life, and in Emily's life, and in this world!

 

 

 

 

 

Driving the school bus driver

During this month of October - National Down Syndrome Awareness Month - I want to tell stories about living with Emily, to tell of how she made a difference in this world. She was a stone thrown in a pond, and the ripples have not disappeared. In this world - she was a small stone. In MY world, she was a crator!

  Except for a few months when there was a substitute driver,  Mary Mausey drove bus # 6.  Still does.  Emily rode that bus for 9 1/2 years. An hour to school and an hour back.  Some days, she saw Emily more than I did.  I can't praise Mary enough. She has the patience of Job!
   But this story is not about Mary, it's about the substitute. 
   A little back information about Emily.  Never underestimate a person with a disability.  To compensate for inabilities, unexpected talents are honed.  She couldn't read a paragraph in a book, but Emily was talented in reading people.  She loved without judgment, and blessed strangers that I looked away from in my social correctness.   In her inability to speak understandably, her behavrs were her way to communicate, and when she was bored, look out.  The bus ride was boring.
   Discipline: now, that's a well debated word among parents.  What's discipline? What's punishment? What's abuse?   In their of fear of being seen as abusive,  many parents have given up even good discipline and kids are left without boundries.  Anyway...   With Emily, I found that having a paddle around was a good motivator to change her behavior.  I rarely had to use that paddle, I just had to remind her that I would.
  Back to the substitute bus driver.  After a brief  honeymoon of good behavior for the new driver, Emily got  bored.  She talked loud, wiggled in her seat, bothered the kids in front of, behind and beside her.  The substitute complained to me, wrote out a ticket.  I told her about the paddle trick, and gave her one (the kind that a ball is attached to it with an elastic string).  The plan was that when Emily misbehaved, she would show it to Emily and remind her that Mommy would spank her when she got home.
  A week later, the driver complained again, Emily's behavior was worse, unacceptable.   I decided to remind Emily's bottom what the paddle felt like.  I asked the substitute to give me the paddle.  I would paddle her right where the  misbehavior was occurring.  She wouldn't give me the paddle.  I asked her again, and reluctantly, she gave it to me.  I was shocked, the thing was beat up, part was broken off.  "What happened to this paddle?" 
  The substitute told me that when Emily would misbehave, she would take out the paddle, show it to Emily, tell her that Mommy would spank her, and she would use the paddle on the door-open lever.
   By the look of the paddle, she must have given the door-open lever quite the spankings.
   Imagine Emily, bored on a one hour bus drive home, full of energy, after sitting in a classroom all day.  "What can I do to make that bus driver go looney?"  A behavior rewarded will repeat itself.  Apparently, for Emily, watching that bus driver was reward enough to outweigh any discipline that would follow.