Monday, July 25, 2016

Getting lost and Driving a car!

We spend the weekends at the cabin.  I puts around in the house and Tom handles the great outdoors!  Hope has the reign of the place. We designed it so her room would be like her room at home.  She has a Murphy bed and a closet full of her stuff.

 With french doors that open to the living area,her room can become extra entertaining space when her bed is tucked away.

Saturday, July 23, 2016

Safety First with Hope

Hope was born in 1999.  This was the end of my "working outside of the home" days!  I always say, I would be fired if I had a job.

Don't get me wrong.  I do have a job.  My job is to be here, there and everywhere that Hope is.  I may not be physically present, in her face, here.  But I am always a drive away, a room away or an earshot away.

I wanted to be the person who could escape from reality by watching tv, reading a book, tending the yard, getting lost in the kitchen cooking, sewing up a storm making beautiful clothes.  But what I found was, when I am not totally present in Hope's life.... things will happen. Things do happen.  And I feel bad, sad and mad.  Things happen!

We have locks on all of our doors.  Outside doors, inside doors, bedroom doors, bathroom doors, refrigerator doors, cabinet doors, closet doors..And LOCKS ON LOCKS!  We have chimes on doors, and windows. We have safety features on stoves, microwaves and laundry equipment.  You can't get out of the garage without knowing a code.  We are freakish about safety.

Then, I slip up and everyone else becomes freakish about me!

I have a full time job, and sometimes I slip up!

One summer, our neighbors were having a garage sale.  Hope shopped and spent way too much money on crap...but I let her.  I figured that she was all finished and over the fact that there were treasures next door.  When we returned home, I forgot to apply the elevated deadbolt lock on the front door.

I returned to my computer, that is next to her room and listened to her play with her new treasures.  I didn't immediately notice the silence but when I did, I saw that the front door was wide open.  I headed to the neighbors to find her shopping....She was not there and never was!

 I searched the inside of my home then I got in my car and started to drive around the neighborhood.

 I called the police, I posted on Facebook, I walked the neighborhood. It was announced on our towns ALERT. Someone remained inside our home in case she would come back.

We have a lake in our neighborhood.  She doesn't swim.

We have two busy roads that outline our subdivision.  She doesn't look both ways before crossing.

 The next hour of my life stopped my heart.  I beat myself up about the lock every time I found a new person to help look for her. I knew exactly what she was wearing, how her glasses looked, she probably had the baby doll with her that she just purchased at the garage sale.

After searching the neighborhood behind my house, I came to the front yard where my car was parked. My daughter, Bissy, was leaning up on it, talking to Hope.  She thought that I knew that Hope was in the car.  She was not in it when I drove around.  To this day, we do not know where she went.  At the time, she pointed to a neighbors yard and said they had toys...she may have gone there but I didn't see her when I looked.

Safety....a big worry with all families that have special needs kids or parents with alzheimers.

I've researched security devices that could be attached to her, put in a doll, and have found non-permanent tatoos. The technology is getting better and better to help us with our wandering kids.  I wish we could put a chip in her, like the vet does for a dog.  But I guess that is inhumane.

I have slipped up many times since this.  When you are in public, you don't have the benefit of locking doors. As the parent you are also at the judgement of bystanders in how you react to a child who has wandered! 

I bet you can't wait to hear about the time we couldn't find her at the cabin ,in the forest on a weekend!!

Monday, July 18, 2016

Gasp....I forgot something at the Cabin!!!

One Sunday afternoon, as we drove home from the cabin, my gasp almost caused a wreck on I-64.
 (I-64 is hilly forest lined drive connecting Louisville, KY and St Louis,MO)
I startled Tom. "WHAT?  And " Quit being a backseat driver!" are his typical responses. I am the back seat passenger.  Hope calls SHOTGUN everytime!  She watches the signs and knows where every McDonalds, Wendy's and Restroom is from the cabin to home!

 My usual gasps are when we are passing semi's. (In the 70's, my mom and I were side swiped  by a semi in the Sioux City stockyards area.  I haven't been the same since when it comes to passing those monsters!!)  Or I gasp when I think Tom is driving too close to the median.  Or if he is going too fast....Or too slow.  Or when I think he blinked to long and I think he is falling asleep behind the wheel. I can see his face in his rearview mirror!! I gasp a lot! This particular gasp was because we forgot something at the cabin!

The first time we forgot something ( all of our MEDS).  We, I mean I, didn't discover it until 8 pm on Sunday.  If you are like us and take meds...... you get need your meds! You need your night meds and you need your next day meds...Gasp!

That night was the longest 72 minute drive one way to the cabin. There was a thunderstorm in the forecast and it was night!   Tom stayed home with Hope.  Bissy, my daughter, and I made the trip!  Gasping more than once when semi's passed us spraying waves of rain water, frightened, I pulled over and Bissy took over the wheel.  This was not a graceful exchange of seats in a Prius,in a thunderstorm, on an interstate, in the dark!   We did NOT get out of the car!  She, 5' 10" or taller, some how crawled over me, and I, slightly out of shape ( ok, very out of shape) crawled under her!  I was gasping, she was laughing and the semi's kept passing.   We made it home by 11 and everyone sleepy eyed woke up and took their meds!  Gasping.... I fell asleep!

The most recent time I gasped on the drive home and almost created an accident on I-64 was when I forgot the bananas in the kitchen.  Yes, the bananas!

 No big deal, right? You know how bananas get after a week! They get black, they get weepy, they get fruit flies! Gasp!

There was NO debate, we would NOT go back to get the bananas.

On Monday, I worried that they were turning black.
On Tuesday, I knew that they were black and weeping gooey sap.
On Wednesday, I remembered that they were in the cupboard and my wood would be rotting from the gooey sap seeping out of the bananas.
On Thursday, I was positive that the fruit flies were invading the entire cabinet, bursting it open and spewing banana juice and slime all over my beautiful kitchen. And the flies would multiply and fill the entire cabin, finding other things to eat!
On Friday when we finally got to the cabin...I hesitated on opening the door.  I knew that the rotten banana smell would overcome my senses and that the fruit flies swarming around would be like a white cloud in the kitchen.

I opened the door. I gasped. I smelled. I saw. I felt. Nothing!
I went to the cabinet.....they were perfect. WHEW!!!

My mom always says, "Don't worry Gramma!"  I spent a week worrying about bananas.  So what do you do...YOU MAKE CAKE!

Since I didn't have a recipe, I searched  And since I am a Becky Home Ecy, I just wrote down the necessary ingredients on a picture that one of my grandkids drew. The process of baking is just in my head!!!  I know, it is a gift!

Hope helped mash the banana's.
And when it was done. We sat on the Porch...In the Woods..and ate Cake!
And I sighed, "Life is Good!" Whew....Gasp...What will I forget next week??

Thursday, July 14, 2016

Hope has a dollar!

Hope loves money.  Especially paper money.  Not play paper money....the real deal.  She doesn't care for coins.

On Tuesdays, it is nothing to find dollar bills tucked away in a wallet  that is in a purse that is  in a gift bag that is tucked under a pile of newspapers, clothes, scarves and hats.  She has an order that she lays her stuff.  And that order constantly changes.

These dollars came from my purse.  Yes, she stole them.  But she thinks that everything is hers and your stuff is hers therefore it isn't stealing.

Hope loves the Dollar Tree.  I love the Dollar Tree. Do you love it?  When we go to the Dollar Tree, we have a rule...Only 2 things and a coke!  Somehow that has grown to 3 things and a coke. But it isn't worth arguing about.  We just smile and leave!

She loves to hold a dollar bill in her hand and wave it like a flag. This is how she let's people know that she wants to give the dollar to them.

We were in the car, she in her pink wig and hat and me with my new RED sunglasses waiting on the corner of  The Lloyd and Burkhardt Road.  ( This is a major intersection in our town)  There were men holding fireman boots walking up and down between the cars. These were real life Firemen taking time to collect for a CAUSE.  Hope blew kisses, flirted, and squealed when she knew that she was going to give them money.  This was the first time that she handed a stranger money through the car window.

This experience has led her to insist on giving money to anyone who is standing next to the road or next to a red bucket at Christmas time.  Her enthusiasm has made me a better person.

When I am at an intersection where a homeless person is holding a sign, I put on those sunglasses and hide behind the darkness.  I know the controversy.  I know it could or couldn't be a real deal.  I look straight ahead and don't engage.

When I am at that same intersection with Hope in her pink wig and fashion hat blowing kisses at the sign holder, my heart softens as she asks to give them a dollar.  She squeals with excitement as she waves the money. She looks at their face and touches their hand.

I don't know if this person is in need or not.   All I know is....a little girl in a pink wig blew a kiss at someone, gave them a dollar and made them smile. And maybe, just maybe.... they went to the Dollar Tree and bought a coke.

Tuesday, July 12, 2016

Hope Hates Tuesday!

Every Tuesday at 8 am, my friend Voz comes to my house to spend quality time with me cleaning, sorting and most importantly, retrieving all the items that were stolen, lifted, or borrowed out of Hope's room.

Hope loves stuff!  She loves her stuff, your stuff and any thing that is on the table stuff.  She can walk by the counter and take the most important letter in the stack.  Swim suit issue of Sport Illustrated...GONE!  House Insurance bill...GONE! Car keys....GONE!

We can't even get things to the recycle bin without her bringing it back in the house.  Pizza boxes, newspapers,paper sacks and gift bags.  She loves to fold the papers and put them in the bags. And she has a humming sound as she "organizes her stuff".(I wish I had a click here button for you)  After she has organized them, she throws them back and forth into new piles still humming.  In a given afternoon, she will make 5 different piles.

Hope hates cleaning day on Tuesday!
Before she is even out of bed, she asks," Is Voz going to clean my room?"
I always answer, " No I will! I want my stuff back!"
She replies, " Don't touch my stuff!"
Sometimes on a Thursday she will ask," Is Voz going to clean my room today?"
 I always reply, "NO, this is Thursday!"

I often times refer to her room as the "Hoarders Nest".  And it really is my fault!  I love, hats, wigs, and crowns. I love a does she! And she also loves purses, sunglasses, brushes and books.She loves, Barbies, baby dolls, and toys!  Anyone's toys!

 I just took a garbage bag full of purses to the Goodwill.  I take them there, get a donation receipt and then she and I return later to buy different purses.  She loves to have a wallet in every purse.  We usually spend over $5 on Goodwill trips! She can spend an hour in the Goodwill, picking up and putting down.  The purchase she finally makes is usually the first thing she picked up!  She tells everyone as she leaves...." I got a purse!"

Last night, I walked into her room.  She had taken an entire bag of cherries to her room, bitten off a piece and left the stems and seeds on the floor.  I put on my stern face with hands on my hip and she picked them up apologizing the entire time....  "Sorry Sorry Sorry!" 

I love Tuesdays.  And I am thankful that it is only 7 days until the next Tuesday!  I'm also looking for my hairbrush, my glasses , my camera and my house keys.  I bet they are in a purse!

Tuesday, July 5, 2016


Hope is Eighteen years old and just happens to have Down syndrome. She loves hats, wigs and crowns.  She is very discerning on what hat to wear.  Sometimes she wears two, with a wig and a crown or ears! And most recently, she has been wearing 5 to 6 hats at a time.

She has always loved hats!  When she was five,we had guest over for dinner.  She had been playing alone and emerged into the dining room wearing my underwear as a hat and Tom's underwear as a vest.  She greeted each guest with her usual curtsy and expected hug.  Embarrassing?? If the hat were a leopard laced thong and the vest a neon silky brief, the answer would be NO!  That undergarment style would have made her parents appear sexy under their jeans!   Nope.... her mommy wears granny panties and her daddy wears plaid boxers!  The next 30% off deal at Kohl's warranted a trip to the intimate department for something more stylish....just in case it became a hat!

She seems to have a sense of style that goes with the Holiday, Disney movies,sports teams,political themes or  just plain "Hopestyle". We have purchased hats for full price, half price, Dollar General Price, Goodwill Price,and negotiable garage sale price.  She has stolen hats from sisters, nieces, nephews, dad, grandma, and strangers.

She told a stranger that she likes his hat while sporting a Packer Hat and Crown.
The stranger  responded"I like your hat too!" Knowing full well that BEAR fans detest PACKER fans!   People are very kind to Hope!

I have driven down the busiest streets in our city, with Hope by my side sporting a Clown Wig and Cowboy Hat, a Elsa Wig and army hat, or a Anna Wig and straw hat. The combinations are mind boggling.  She will blow kisses to anyone who acknowledges her!  It makes them smile!

We have had discussions about NOT wearing certain hats to church.  One Sunday I could not get her to remove the "snowman" bowl type hat but she did agree to leave the green wig in the car. Everyone said, " I love your Hat"!  She thanked them, curtsied and blew a kiss!  She is a Rock Star!

I am the most guilty about buying her hats and wigs.  Did you know that you can get wigs for 75% off at CVS after Halloween? Yup, neon green, purple, periwinkle, black with white stripes........  For Christmas, Santa ALWAYS fills her stocking with wigs.  Silly Santa!

One year, while traveling,I found a wig shop in San Fransisco with every iconic star wig possible! And the prices were untouchable!  I had to remind myself about the great sales at CVS back home!

Recently,I was digging around in my garage and found a full tote of hats.  Seriously...a FULL.TOTE.OF.HATS. I brought it down from the rafters and had a flood of memories...the panda ears from DC..The Minion stocking hat she stole from my grandson, the baby size "cheesehead" we bought in Green Bay and the Barack Obama ears and doll that her sister won in a crane drop game!  Every hat, wig,crown and ear had a memory!

There will be more hats, there will be more totes full of hats,  There will probably be a building built to hold the totes full of hats!  And there will be a leopard print undergarment in my drawer, just in case we have guest for dinner again!