Tuesday, August 31, 2010

Remembering Mama

Beth used to call my mom Mama. My dad was Papa. Even though they divorced when I was a teenager, they got along well and would often be at our house at the same time. Mama and Papa. Papa is 85 and still going strong. Mama would have been 75 today.

My mom lived a hard life. Her earliest memory was when she was about five. Her family was spending a few days at their cabin. A small fire drew their attention - just for a moment - away from the lake. My mom remembers pulling on her moms sleeve, asking if she could play with the dolly floating in the lake. That 'dolly' turned out to be her 3 year old sister.

My mom believes the death of her little sister snapped something in her mom. She was later diagnosed as a paranoid schizophrenic. My mom endured years of severe physical and emotional abuse. She married my dad at 16, just to get away from home. She got pregnant on her wedding night. That first child, my oldest sister lived. The next two pregnancies resulted in miscarriages. Then our middle sister was born. Healthy and strong. My mom went on to have 5 more pregnancies, all of them miscarriages. By the time she was 26 her doctor told her no more. She wouldn't survive. Neither would the baby.

Then I came along. My mom and I always had a strong bond. My sisters were older and had married and moved out by the time I was 11. Then the divorce. For almost 10 years it was just me and my mom.

Chuck and I got married, then we had Beth. My mom instantly bonded with her. She knew that Beth too, was going to have a difficult life. Nothing like hers of course, but still, more challenges than any one else in our family had known. My mom found a soul mate.

Mama and Beth did everything together. Shopping, out to eat, board games, singing. Mama adored Beth and Beth adored Mama. We lived in the same apartment complex for a couple years, just as Beth was learning to crawl and walk. She would toddle over to Mama's and bang on the screen door, "Mama!!" Those were some of the happiest years of my moms life.

When we decided to move to Washington State (from San Diego) Mama struggled for a couple years, then moved up to be near Beth. It was hard leaving her other grandkids, but the bond between her and Beth was just too strong. When we thought we were moving out of the country, Mama moved back to San Diego. (The Lord closed that door and we ended up not going.)

Mama became ill and lived her last few years in a home. We would visit her as often as we could, although Beth was nervous around the oxygen tubes and wheelchair that became Mama's constant companions. Her difficult life ended on what else, Friday the 13th. She died in May of 2005. Beth still talks about things they did together. When she watches the movie Pinnochio, she always tells us that her and Mama saw it together. Whenever we go into our local mall, Beth will remind us that "Mama used to work here." Her bond with Mama was very strong. Her love for Mama, even stronger.

Saturday, August 28, 2010

She's Been Trying to Keep Up

I haven't been able to stop thinking about John Franklin Stevens. He's the guy whose letter has been all over our blogs. He wrote it in September of 2008. The part I can't stop thinking about is this:

"The hardest thing about having an intellectual disability is the loneliness. We process information slower than everyone else. So even normal conversation is a constant battle for us not to lose touch with what the rest of you are saying. Most of the time the words and thoughts just go too fast for us to keep up and when we finally say something it seems out of place." 

This.... this happens all-the-time. We will be sitting around the diningroom table chattering away and from out of left field, Beth will say something that we were talking about 10 minutes before. I've wondered how to blog about it; our frustration in trying to understand this behavior. Oh my word. John's explanation almost brings me to tears. Thinking that Beth has been sitting there trying desperately to keep up. I've been so insensitive. All. These. Years. Lord, forgive me.

"We are aware when the rest of you stop and just look at us. We are aware when you look at us and just say 'uh huh' and then move on, talking to each other. You mean no harm, but you have no idea how alone we feel even when we are with you."

Oh my gosh, we do that all the time! We look at her like, "Yea Beth. Okay." Then continue on!! We didn't know...!! I didn't realize that's what was happening! He's right, we really didn't mean to hurt her. I wish she could have explained what it was like for her. I'm so grateful John was able to express it.

It has changed me. Changed us. We now speak slower. Not a painful... deliberate.... torturing speech. But just slightly, to give her time to not only recognise. each. word. but. to also understand the concept behind the sentence. Then we are patient, waiting for her to process, then form a response, and actually speak it. I have seen a huge difference. She is willing to talk to us more often. And she seems happier. Like she's not as alone as she was last week.

Thinking about what we've been doing makes me sick to my stomach. Part of me is on the verge of tears thinking about what life must be like for Beth. Part of me wishes I was a better parent. Part of me wishes I had known this years ago. I know that in the world of Down Syndrome, Beth is quickly approaching middle age, if not there already. Some days I feel like it's too late and I've failed her.

But part of me is so grateful that we are making this change. Always trying to make life better for Beth. Always trying to understand her better. That's what parenting is after all. And it doesn't necessarily end when they turn 18.

It's time we stop looking over our shoulders to make sure Beth is still running this race. It's time we slow down and consciously run with her.

Friday, August 27, 2010

Fun Photo Friday!

This was taken at a Special Olympics tournament a couple years ago.
Beth is #45, getting ready to shoot a basket.

So, do you think it went in?!?

Wednesday, August 25, 2010

Beth's Apartment

Our house has a daylight basement. When we first moved in, we began to talk about how we could make it into an apartment for Beth. Course, she was only 15 at the time. But we knew if we were here long enough, it would be perfect for her. Well, we've been here almost 10 years now. Sharaya is married and Diana is in the upstairs bedroom.

We are slowly making the downstairs into Beth's apartment. Today we worked on the living room. We found a cute coffee table at a thrift store for only $10! We rearranged some furniture and cleaned. Boy did we clean!

Beth went to karaoke and art class today and called me on her way home. "Mom? Did you an Dad finish my woom?"
The first thing she checked was her TV. She l-o-v-e-s her TV.

She checked out her music room. It will eventually be a kitchenette with a microwave and small fridge. But for now, it's her music room. Her most favorite thing after TV.... is music!

The door in the living room picture is to the stairs. The door in the music room picture is to her bedroom. (The paper taped to the doors are her list of rules. Rules she created and that are to be followed when you are in her house.)

She sat down on the couch, looked around the room again and said, "Wow."

I love it when she's happy. :)

Tuesday, August 24, 2010

It Huffed and It Puffed.....

And it blew our fence down! It was an old fence. Kinda tired and in need of repair anyway. The wind storm just showed us we needed to repair it sooner rather than later.

Our neighbors layed the bricks and we hired a friend to put up the fence. With help from friends and family, the fence was finished in less than a week!

Saturday, August 21, 2010

"Shopping For Fun"

Beth asked me yesterday, "What are we doin' tomowow?"

"I don't know, why?"

"I wanna go shoppeen. For fun."

So we spent today shopping. For fun.

We found fun at the music store. Listenin' to some tunes.

We found some fun at Auntie Annes.
Raisin pretzels! Yum!

And of course we found fun at The Disney Store!

It's always a good day when you shop for fun!

Thursday, August 19, 2010

Perfect Surprises!

I haven't posted the last few days because I've just pulled off two perfect surprises!!

My sister Kathy was planning a trip to Disneyland with two of her grandkids and asked Diana if she wanted to join them. (Diana, being the world traveler said yes of course!) We were able to work our budget so I could join her, but we didn't tell my sister that I was coming! (This stems from 12 years ago when Kathy and her family flew from San Diego and surprised us here in Washington.)

Now I don't have a picture from the actual moment of surprise that happened this week, but I will never forget the look on my sisters face when they came around the corner and there I stood! Her mouth dropped open, her eyes widen and she screamed a scream that shook the buildings! It was priceless!!

We had so much fun! Riding the rides, watching parades. Diana and I ended up being in the very front of the log ride on Splash Mountain and were completely drenched! We had such a fun day though and knowing I had repayed my sister made the day even sweeter!

Cheryl, a friend from work just happened to be at Disneyland at the same time (it was her very first time ever!) and we just happened to see each other.... twice! How crazy is that?!

The next day, Diana and I rented a car and drove 2 hours to San Diego to surprise the rest of my family. I enlisted my niece Michelle to make sure everyone was home when we arrived. Unfortunately Diana and I were running late and our cover was almost blown! But we made it! We parked down the street, then ran close to the houses so we wouldn't be seen. Michelle said she needed to get something out of her car and was outside waiting for us. When we walked into the house, she told my sister, "I found what I was looking for." Deb asked her what it was and turned to look. She was doing dishes and dropped a bowl into the sink and screamed! She began to shake and came over to give me a huge hug! My dad was speechless. He just stood in the middle of the living room with a huge smile on his face. Aahhh, it was amazing!!

We were only there a few hours, but it was so much fun. We drove back to Anaheim that afternoon and flew home last night. It was a whirlwind trip. We were so tired by the time we got on that plane, but we had so much fun!

It.... was.... AMAZING!!!

Saturday, August 14, 2010

Twenty Eight Years

Twenty Eight Years ago today.... I said "I Do!"

I was begging him NOT to smash the cake into my face!
Begging didn't work. :)
Of course, he'll tell you that I started it!

Friday, August 13, 2010

Wednesday, August 11, 2010

Dreading This Day - Part 2

Beth came upstairs at around 12:30. Dressed in her long blue dress that she likes to wear to karaoke. And she had her tote (with all of her CD's, notebooks, pens and stuff) and her purse. She came out to the kitchen to read the note I always post for her telling her what time her bus comes, etc. Only the note wasn't there. I had written a list of chores for her to do instead.

I told her that she was not going today because her bus had already come. A long time ago. She quietly went to the fridge, got out her lunch and was taking it to her bag when I told her to put it away. "Beth, you were awake last night and you slept this morning. Your bus came this morning. You missed it. You're not going today."

She stomped her foot and said, "Nooo!" She angrily put her lunch back and went downstairs.

She is doing her chores, but certainly not with a smile on her face or a skip in her step! There have been a few slammed doors and some really loud singing, but seriously not as bad as I was expecting.

We'll have dinner, then tonight at 10:00 I'll go downstairs....

I'm Kind Of Dreading This day

Beth missed her bus again this morning. DART has already sent her one letter telling her that if she is a 'no show' one more time, they will cancel her pick ups for a few weeks.

Monday night I went downstairs at 10:00 to remind her it was time to get ready for tomorrow. Get the CD's she was gonna listen to on the bus, put her bowling ball upstairs, pick out her clothes, set her alarm, etc. Then lights out and in bed by 11:00. The dog came into our room at 2:30 AM because he had to go potty. I let him out and hear something downstairs. Beth is playing Monopoly. Full board, all the money, everything laid out in perfect piles. "Beth!! You have GOT to clean this up and go to bed!!"

Last night, 10:00 I go downstairs... you know the drill. She actually turned off the TV and got to work. Yes! Something woke me up at 1:00 this morning. It was Beth, singing. She is sitting on her couch, writing on her scratch paper, listening to her headphones, singing at the top of her lungs! "Elizabeth Meigan!! You have got to go to bed!!"


This morning just before her bus arrived, I went downstairs and she had turned off her alarm. She didn't hit snooze today. Nope, she turned it off. So.... I let her sleep. And of course, her bus came and went. I don't know what it will take for her to learn this lesson.

Being an adult doesn't mean you get to do whatever you want. It means you have to do the right thing. I think I have tried every explanation there is -

1. Mom and Dad have bosses that we have to listen to.
2. Your bus driver wakes up, gets dressed, warms up the bus just to come get you.
3. You have to wake up when your alarm clock goes off, not when your bus comes.
4. You have to watch the clock. Your bus driver makes sure he is here at 9:30.
5. You have to go to sleep at night cause in the morning you don't have a choice to sleep.

There will be no TV today until all of her chores are done. And I have a long list of chores for her to do. I'll try to keep her as busy as possible to make her as tired as possible! I came home from work yesterday at 4:30 and went downstairs to see how her day went at work. She was sitting up on her couch, remote in her hand, sound asleep. I know she's exhausted. I just don't know why she won't go to sleep before 3 AM.

So, I will wake her up and give her the news that she missed her bus. No karaoke, no art classes, no hanging out with her friends today. Then I will give her the list of chores.

Sunday, August 8, 2010

We Had a Life.... Before

A while back, my daughter Sharaya wrote something on her blog The Broken Anthem that I haven't stopped thinking about. She wrote, "Unlike my parents who knew a life before Down Syndrome, I have been surrounded by it my whole life." I've never thought about it like that before.

I grew up in San Diego. It is warm and sunny 360 days a year. We were outside all day, every day playing jacks, chinese jump rope, riding our bikes. We played until the street lights came on. There was hide and seek, tag. No one I knew had Down Syndrome. I didn't even know the word existed, let alone what it meant.

There was a family who lived across the street who had a child with a disability. My mom told me that when Teresa was about 2, they found she had moderate hearing loss. (She hears fine now, although she is mildly delayed.) I remember waiting for Teresa to get home from school so we could play together. Our families would go camping together. I don't ever remember thinking Theresa was different. And Teresa and I are still friends today. We send birthday cards and Christmas cards and I try to see her whenever we visit San Diego. Growing up, she was the only person I ever knew who was handicapped. Yet I don't ever remember hearing her described that way. She wasn't handicapped. She was Teresa.

And by Jr High I had still never heard the words Down Syndrome.

Jr High and High school bring memories of broken arms, home ec classes, drill team, football games, Saturday Night Live, the beach and shaving cream fights. Not Down Syndrome. Although I do find it interesting that I got C's on all my Biology papers. Except the series on Genetics. I aced that part.

After High school I got a job at Woolworth Department store. I still remember being in the jewelery department one day watching a group of young adults. They were from a local group home, everybody knew about it. It may have been the only one around. Obviously they were on an outing to the mall that day. All of them holding hands, walking orderly through the store. The attendants keeping a sharp eye on the line. I don't remember really feeling anything. I don't think I felt sorry for them. I just remember watching them.

I was still working at Woolworth when I met Chuck. We got married.

Then I got pregnant.

That's when Down Syndrome entered our world.

I don't want Down Syndrome to define us. But it does. It's as much a part of our family as the color of our hair. Or lack thereof for some of us. Okay one of us. :)

Down Syndrome changes you. It changes the dynamic of your family. As the saying goes in our world, we live in Holland! We shop here. We empty trash here. We do our laundry in Holland. We will always be in Holland. I'm going to talk about Holland. I'm going to complain about Holland. I'm going to wish that sometimes I wasn't in Holland. But the bottom line is, I absolutely love Holland! I wouldn't WANT to live anywhere else!

Yes, I knew a life before. But Sharaya didn't. We come from two different places and our stories are different. One day I arrived in Holland unexpectantly and chose to stay. Sharaya was born here.

Tuesday, August 3, 2010

Panic Mode

I'm one of those people that tend to panic in an emergency.  Adrenaline flows, my heart pounds, I talk faster and walk faster. That's what happened today when the assistant called from the bowling alley to tell me Beth was laying on the floor crying and did I happen to know what might be wrong?

I did know. Beth had called me at work right after she got on the bus (of course) to tell me her stomach hurt. I prayed with her and told her to call me after she got to the bowling alley. She was on the bus, there was nothing I could do anyway. When she didn't call, I figured everything was okay. Until the assistant called. The bowling alley is filled with about 150 kids practicing for Special Olympics. I kept thinking about Beth laying on the floor in the middle of all the noise and chaos. My heart ached.

I talked to her and she said she felt like she was gonna be sick. I told her to go into the bathroom, lean over the toilet and I'd be there as soon as I could. I work about 12 - 15 minutes from the bowling alley. I was there in 10.

I guess it was a good thing she waited until I got there to get sick. Boy did she get sick. I will save you from all the details. It was kind of funny to hear all the kids coming into the bathroom. They didn't hold back at all! "It stinks in here!" "Oh man! What smells?" "Wasn't me. Mine don't smell like that." Beth and I were in a tiny stall with the door locked so I said, "Someone got sick." One of the girls said, "Oh. That's why." Too funny.

Another assistant brought in Beth's purse and bowling ball. She still had on her bowling shoes so we had to change those then we slowly headed out to the car. I had some plastic bags that I put in her lap, just in case! (I also had to have her sit on a plastic bag and wished I had some extra undies in my purse, but that's all I will say about that.)

Got her home and had Diana call DART to tell them to cancel her ride and that I had brought her home. While she was talking to them, the bus driver called my cell asking me to confirm that I did indeed have Beth. All of this while I was hand washing clothes and getting Beth settled on the couch. I was thankful they wanted confirmation. Too many kids fall through the cracks on stuff like that.

So now Beth is settled on the couch watching the Disney Channel. She is sipping her Sprite and nibbling on crackers. Tomorrow is my day off so I'll be able to stay home with her. It was scary. I kinda wonder where the adults were who let her actually lay down on the floor. I wonder if anyone helped her up and to the bathroom. I guess they aren't as supervised as I thought they were. I don't know, with so many kids, maybe they were overwhelmed. And Beth doesn't like to talk to people. She's very shy and holds things in.

Oh well, I guess it went okay considering. She's home now, safe and comfy on the couch. And I think I'm past the panic mode.