He is Risen! He is Risen Indeed!

 Easter. 

 

Resurrection Sunday.

 

Jesus died for our sins to reconcile us to God.

 

And rose again so we can have eternal life with God.

 

Thanking the Lord today for His amazing sacrifice.

 

Praying for a blessed Easter weekend for you and your family.

 

A Love Without Limits - Paul and Kris Scharoun-DeForge

Have you heard of these guys? I read about them in the Readers Digest this month.

They are celebrating their 25th Valentines Day as husband and wife but they won't be together this year because Paul has dementia. He was moved into assisted living and it broke Kris' heart.

"He opened up my world," Kris said. "I looked into his eyes and I saw my future."

There is a picture of them sitting on the couch, her head is resting on his shoulder and her hands are wrapped around his arm.

They both have Down Syndrome.

It goes on to talk about how he proposed, how they worked together to organize their wedding and how they have served each other for the last 25 years.

I couldn't help but think of Beth and Nick. Of how different their relationship is from Paul and Kris.

The first few years that Beth and Nick dated, he talked non-stop (seriously!) about getting married. How they would get married and move to L.A. and he would become a firefighter and they'd live in a $500,000 home... none of it was realistic and he didn't want to talk about what a real marriage could be like. Even the good things! I understand having goals and reaching for the stars and all that, but no matter how much you tried to talk about this realistically or ask him honest questions about it, he would argue with you and insist this would happen. His mom finally put her foot down and told him no more talk of marriage. Not for a while anyway. We know neither one of them is ready for marriage (mentally or emotionally) let alone moving to another state by themselves.

Nick is very controlling and Beth is very meek. She often gets angry at him because he texts her almost constantly but she never says anything to him about it.

Beth won't look at Nick. Her head is usually down and she'll kind of grunt but they don't have conversations. Not face to face anyway. When they're with each other, she barely looks at him.

In fact, I've had her practicing saying Hi to herself in the mirror. To look at her face, or her chin or nose if looking at her eyes is too hard and say "Hi!" Just to get comfortable with looking at a face when she talks. 

It's things like this that show us they're just not ready. And that breaks my heart for both of them.

Their first date - on her birthday 2014

  
Last month he was banned for a week from All Aboard because they can't keep their hands off each other. Beth was put on a separate bowling lane for the same reason. Last week we stumbled upon... a situation... that has us concerned. Right now it's harmless (because neither one of them drive and they live 45 minutes from each other) but it could lead to some more serious issues.

There's just so many things going on right now with the two of them and I don't know if it's going to to escalate or eventually die down and become nothing.

I'm so torn because they are both adults. I feel for them, I understand what they're going through. But, even though they're adults they don't understand the full impact of some of the choices they're making.   

A Quick Little Post About What I Found On The Front Porch

I came home from work the other day and couldn't figure out what was hanging from my wreath on the front porch.

I looked into the wreath and oh my goodness! Sharaya gave me the wreath for Christmas so I've only had it a few months.

 

On Monday as I was going to work, the little momma bird flew out of the nest when I opened the front door. She sat on the roof right above the porch as I got into my car then drove out of the driveway. Then today when Chuck left for work he called me over to show me the eggs!!

Now we're trying to be very careful when we're coming and going. I know very little about birds and have no idea how long it will be before they hatch but I'm so excited to hear those tiny little chirps!

A Few Random Things

We're still recovering from... whatever we've had, but we are doing better. We're at the end of this stuff and each day we feel just a little bit better.

Allie had a sleep over at her house this weekend and Sharaya made these cute pancakes!!

 

Diana got some great news about her job. 

I'll share details when I can. 

Chuck went back to work after a two week vacation. He said the passengers have been... interesting. One lady got on and immediately began yelling that the bus smelled like pot. She went to the back of the bus and opened all the windows, then sat in the front of the bus, complaining about the smell the whole time. No one else smelled it, just her.

As you can tell, there's not much going on around here. I hope your weekend has a little excitement in it! :)

It's Just Who We Are

I sometimes wonder if I should change my blog title. When I think of 'Adventure' I think of white water rafting, sky diving, climbing Mount Everest, rock climbing... extreme sports. One of you mentioned once that this is the daily adventures of living with someone who has Down Syndrome.

I like that. Daily adventures. I can live with that. :)

This last weekend I saw on Facebook so many people out camping, boating, fishing, hiking. So active and always going somewhere or doing something. We... don't. I think we're just getting to an age where life is slowing down. So lets see, what were some of Beth's adventures this last weekend:

She changed her bed

We cleaned out her refrigerator.

It's small so it didn't take too long.

She emptied the dishwasher and did some laundry.

Then she watched High School Musical and counted her change. 

She loves her change!!

One time when the girls were small, my mom and I took them to the mall. My mom gave them each a quarter to throw in the fountain and Sharaya and Diana threw theirs in immediately. Beth looked at hers and then put it in her pocket! Why would anyone throw away perfectly good money?! :)  

 

So that was our adventure for the weekend.

What did you do?

Writing About Other Stuff Because I Can't Write About The Big Stuff

Saturday was Chuck's birthday. He wanted to go to Moonshine BBQ for lunch so we got there right as they opened. They have the best BBQ! Then we came back here and he opened his presents. He is the hardest person to buy for and he always seems to find out ahead of time, what he's getting! But it's still fun. He loves lemon meringue pie so we buy that instead of cake. :)

We had some family photos taken this weekend. They turned out really good and I can't wait to get them back!

I sprained my ankle as we were leaving to go take the pictures. I told Chuck, "Better my foot then my face!" :) It's still sore today but is definitely getting better.

Sharaya is enjoying her new job. Her and Allie hung out here on Saturday afternoon, she and Diana played cards and Allie and I read a bunch of books.

Diana bought a new car this weekend, it's a Kia Optima. It's smaller than her last car and gets better gas mileage!

Beth and Nick want to go on a date for Valentines Day but I don't think we're gonna be able to make everything happen. I hope we can get them together at least.

Nothing too crazy. Just basic, random stuff.

There is one amazing thing happening around here but I'm not allowed to say. Not yet anyway. :)

So this post will be short and sweet!

Their First Date

On Sunday Beth and I walked into Denny's and Nick said, "Beth's mom, my mom is sitting over there" and he pointed to the other side of the room. Then he patted the spot next to him, "Beth, you sit right here."

It was so sweet to see the two of them together. Loren and Nick arrived before we did so she was sitting facing them. I turned around often to get a peek and he would have his arm around her or they'd be looking over the menu to decide what to eat or he was tickling her...

Loren and I talked for 2 hours. About our husbands, our kids, our lives. Then Nick called his mom over and she said he needed help with how much to tip. :)

As Loren was paying, Nick almost bumped her arm and she told him to be careful. He reached up like he was going to bump her elbow, then looked at me and got a very sly smile on his face! He's such a funny, warm guy.

Beth keeps telling me, "I think he's the one for me." "I think he's my forever."

We've talked about what it would be like if they got married. I asked her if she'd want to have a baby and she said no. I honestly don't think she'd be able to handle a baby. Loren said Nick lived alone for 5 years but I know Beth couldn't do that. If this really does go as far as marriage, well, there's just so much we'd have to consider.

These are conversations I never thought I'd have with Beth. But now there are situations we have to discuss and consider for her future. For their future.

For now though, I've told her they have to get to know each other better. They have to go on dates, go to the movies, he could come here and see where she lives. She can go see where he lives. They need to spend a long time getting to know one another.

I don't know where this will lead but Beth is sure having the time of her life!

 (This was taken at her birthday in October.)

Unsettled

Our church has been unsettled.

Our worship pastor changed the style of music we're all used to. There have been so many staff members and pastors that have left recently; one felt called to another church, one retired, another left to take care of a family member... the reasons have been good ones but all this change has caused pain and confusion among the congregation.

Our pastor has been receiving texts, emails and letters filled with suggestions on how to get this person back or how to fix this situation. He could tell we were 'unsettled'. When he used that word, it resonated within each of us. It's exactly how we feel.

This nation seems unsettled. In fact, the whole world seems to be in a place of turmoil.When you go to church, you expect to find a place of peace and joy. But that wasn't the case at our church.

When the old testament church was feeling unsettled, the priests tore their robes and called for all of Israel to fast and pray. So our pastor called us to a week of prayer and fasting. Except for our food and clothing bank, all other activities were cancelled. He felt led to have prayer twice a day, once at 6AM and again at 7PM. He told us later that he would be happy if 50 people showed up that first morning.

 Some people fasted food the entire week. Others turned off the TV. For me, I fasted social media. I can spend hours scrolling through Facebook posts or looking through Pinterest ideas for my house or yard. For that week, when I would usually be on the computer, I would go into my bedroom (often called your Prayer Closet or, taking from the new movie, the War Room) and I would pray. For me, for my family, our church, for this nation.

As our senior pastor pulled into the left turn lane that first morning, he waited. And waited. As car after car after car pulled into the parking lot. He was overwhelmed when he walked into the Sanctuary and saw 200-300 people ready to call on the name of the Lord! At 6 in the morning!

We cried out to God, confessing our sins and asking His forgiveness. People would go to the microphone and pray whatever was on their hearts. We prayed for families, for the youth of America, for teachers and for our government. Our hearts were softened to our sin, our grumbling and our lack of trust. People wept and they changed.

After a few days, the prayers began to change from repentance to gratefulness. We began to thank the Lord for all He's done for us. For His grace and mercy. We thanked Him for our church and for the freedom we have in this nation to worship Him freely and without fear.

I can truly say we are a changed people. We realize that through all the changes our church has been through - God is still on the Throne. None of the things happening at our church have taken Him by surprise. We still have a calling to pray, to worship and to serve the community. That hasn't changed. God has a plan for each of us - that hasn't changed. We need to trust Him, and remember that He loves us with an everlasting love.

That will never change.

In Order to be Whole

Something amazing happened this week. For the first time in over 56 years, our church declared, over our website, that we accept and have a place for, people with special needs.

Our church began back in June of 1959 and even though there are people with special needs attending, we've never made it a priority to include them in the life of the church. They can attend. They can allow us to minister to them with a hand shake and friendly hello. But that's where their involvement ended.

But over the last few years, the Lord is changing the hearts of our congregation and we're seeing that without them, we're not whole. If most of Jesus' ministry was to those who were deaf, blind and lame, then our ministry should be as well. 

And now, putting it on the website for all the world to see, it's kind of like putting a fish sticker on your car. Now everyone knows you're a Christian and they're watching how you drive. Now you have to make a conscious decision every day to do what's right.

And what is right, is including people who have special needs. They were always welcome, we just didn't know what to do with them. If I'm being completely honest.

Maybe close to 10 years ago, Chuck and I led a class for parents of children with special needs. We studied Joni Eareckson Tada's lesson titled When God Weeps. It walks you through the difficult emotions we all experience when we first receive the diagnosis. It was a great study, but as the weeks went on, we found most of the parents in our class were beyond that (I guess we should have studied our audience a little better) and fewer and fewer people came. We didn't do another class.

For many, many years we've had a deaf ministry. Deaf Interpretation during the first service and a Sunday school class during the second. We provide them with copies of our Senior Pastor's notes so they can read the transcript and discuss it during class. Earlier this year I met with them and had them write down their talents and abilities, were any of them interested in serving? That's when I learned that one gentleman had become a greeter. His dad greets with him to help interpret when necessary, but he's there at the door, shaking hands and welcoming everyone who walks through the doors!

Another lady loves to knit so I connected her with the director of our food and clothing bank and now she makes blankets, scarves and all kinds of things to be handed out to those who are less fortunate.

It was 5 1/2 years ago that I felt led to begin a class for children who have special needs. My family was actually on vacation in another state when I truly believe the Lord spoke to me (not in an audible voice the way you and I would talk with each other, but in thoughts that I knew were not my own, "I want you to start a class for kids with special needs."

What?? But I'm not in children's ministry anymore. My kids are grown. I volunteer with adults now. You really want me to go back into children's?

My first day back at work, (I'm not kidding!) our Sunday school director came to my desk, sat down in the chair next to me and said, "We have a need. There's a little boy who has autism and it has been so hard for the teachers to work with him and try to teach the class. They're overwhelmed and we don't know what to do." I smiled and told her that I had a solution.

I began to pray about it and talk with some of the pastors and children's staff and a few months later, Special Connections was born. We started in a small room with just a few toys. As we started having a few more kids, we moved to a bigger room with a sink, a bathroom and direct access to the playground.

Over the years though, we found most of the 'kids' were Jr High and older. One Sunday there were 8 kids and 3 teachers and we were packed into that room like sardines! Chaos and noise were the order of that day. Not a good environment for students who have sensory issues. It was soon after, that we moved into our current, much bigger room.

Some of our students have grown up and now sit with their parents or friends in the service, which is our ultimate goal. Our sensory room is purposefully kept quiet and it's filled with LED light toys and sensory pillows and books, great tools to assist those who find a typical classroom too much to enjoy.

This is the sitting area. 

(I have other pics of the room but they're full of kids.)

 

Beth and Teacher Kathy

(There's a special bond between these two!)

Beth doesn't have many BFFs but Kathy is one of them!

Today, there are people at our church with special needs who sing in the choir and those who assist with our homeless ministry. We have a long way to go, but we'll get there.

If you know of anyone in the Seattle area who is looking for a church where their entire family can worship, you'll find us at westgatechapel.com, under the Ministry tab.

Ho Hum

A week has passed but there's still not a whole lot to write about. It's been fairly normal around here:

Sharaya and Allie come for dinner on Mondays now instead of Thursdays. (Sharaya has a second job and Mondays just work better.)

Diana was house sitting for a friend last week but she's home again.

Everything's the same for Chuck, Beth and I.

Yep, pretty boring around here. :)

Beth writing the memory verse on the board for our Sunday school class.

The Hard Stuff About Having Down Syndrome

This blog was started as a way to share what we've learned about Down Syndrome and I know I haven't been writing too much about it lately. But that's because our lives are just... our lives. Down Syndrome isn't always the focus anymore because I realize we're the ones with the issues, not Beth.

There was one day recently where the speed at which Beth lives was really frustrating me. We were at the grocery store and I told her I had a lot to buy and only a short time to buy it so we were gonna have to hustle. She got her cart and I got mine. As we're shopping I'm thinking about everything I need to buy and crossing things off my list... We get to the cashier and she begins 'helping' me pull my stuff out of the cart, one by one by one. I took a deep breath and realized she really was moving as fast as she could. Faster than her normal speed. So I thanked her and moved up to pay the cashier. After I paid I moved out to the aisle to give her room at the cashier. She hollered at me, "Hey!" really loud and it made the cashier and bagger laugh. I told her I wasn't leaving yet and that's when she asked if she could get some cash back. I helped her through the process and then we left.

As we're headed to the car she tells me, "I really hustled, huh?" She was so proud of herself and yet I had been so focused on getting everything done that I hadn't really noticed. But she really DID move fast in that store. We left the house, bought a lot of groceries and were on our way home again in just under an hour. I put my arm around her and told her that I was proud of her. That she did great!

So, I'm finding that a lot of the stuff that makes having Down Syndrome hard, isn't always because of Beth. Too often it's because of me. I'm the one that makes it hard.

I'm impatient. I'm frustrated. I have a short temper. My expectations are wrong.

Beth lives her life happily, going about her day to day activities with a smile on her face knowing it's gonna be a good day.

I go about my life angry that someone cut me off on the freeway. Frustrated that the computer is too slow. Worried about tomorrow.

Beth has her routine and is happy to have it. She doesn't have any enemies. No regrets. She's content with her life and the people and things in it.

What a great way to live.

The Sound of Silence

Rest.

That's the agenda for the week.

There's been so much stress in my life lately, the last 6 - 8 months have been overwhelming to say the least. Not everything affects me directly, but it still takes a toll emotionally. I've even noticed some physical effects from all the stress.

Chuck's job
Our finances
Sharaya & Ryan
Ministry
My niece
Grief...

And that's just the short list.

So I took this week off from work and I'm staying home. Sleeping in. Spending time with the Lord. Getting quiet. Reading. Praying.

I need some time just to quiet my thoughts.

Overwhelmed... and Trying to Remember to Breathe

I've been thinking about this blog for the last week. I know I've needed to write and I've wondered about what to write. I started this blog as a way to help parents of kids who have Down Syndrome. My daughter is grown and...

See, even that, I just want to erase it. My mind has been jumbled lately and I've had a hard time focusing. I wrote a great post in my head the other day, while laying in bed. Then I fell asleep for the night and when I woke up... it was gone. It was relevant, current, exactly what many moms and dads are going through right now... and at the time I remember thinking it was the perfect post but do you think I can remember now, what it was about? Not even a little.

Chuck is losing his job in a few weeks. The company he's been with for 19 years is closing his department and he'll be out of work by the end of the month. He's been applying for jobs and going on interviews but hasn't received any offers yet. I know this hasn't taken God by surprise. Every day of our lives have been written by the Lord, but it took us by surprise and it's been hard not to freak out. When I let myself really think about it, I start to panic so I have to always keep in mind that God is in control and He has a plan for us.

Part of my job is event planning for our business meetings. These events are full time in themselves but I still have to make time to do my regular job. Today was our business meeting (we have 3 a year) and this week has been so stressful for me. Our linen order was never delivered so I went in on my day off and spent a couple of hours on the phone with the linen service company. Come to find out, we did put in an order, but their rep is on an extended leave and never told us, so our order has been sitting in her inbox. Thankfully the linens arrived in time. Plus the attendance exploded this time and instead of setting the room for 85, we had to prepare for 190. Just a little stressful to say the least.

Our Special Connections ministry hasn't been going as I hoped. The Lord is showing me things I need to be doing differently and I've been in a lot of prayer over that. So many additional things that I really don't think I can do. But He reminds me that it's not me doing it, it's Him working through me. We are His hands and feet and if I truly believe that, I have to let Him do His work, using me where He needs me. He will sustain me and strengthen me when I need it.

For 2 years now, Chuck has been working two jobs so I'm doing 99% of the work around the house. Cooking, cleaning, grocery shopping, laundry, yard work... it's become so exhausting. Day in and day out. And Chuck, some days he leaves here at 6 AM and doesn't get home until midnight. Only to be up and gone the next morning at 6:00. This last stint, he worked 13 days straight. (In fact, he's at work right now, while I type this!) So by the time he does get an evening off, he's thoroughly worn out. His second job is very part time and even if he goes to work there full time, it won't even begin to make up for the money he makes at his main job. And because he is working part time there, we're not sure he can get unemployment.

I'm trying to be careful and not get so busy that I burn out. I know too many people that can't say no and it really begins to change them. You can become bitter and angry by always saying yes so I'm truly cautious of that. I've never been one to over do it, but lately we seem to be getting so busy. Some days it seems the stress level is through the roof.

I'm trying to remember to breathe. And to stop and smell the flowers. To really take the time to enjoy what the Lord has given us. Our home, our family and friends. We really are blessed. When I think of what others are going through, single moms, women whose husbands are gone weeks at a time, kids in and out of the hospital, I know my life isn't that difficult.

But sometimes we get so caught up in our circumstances, it's hard to see the blessings.

It Doesn't Make a Difference

Thank you to those who commented on the question in my last post. After thinking about it for a while, I think that extra chromosome could be a blessing.

Now please know, I don't know if there is a correct answer here, this is just my opinion. But that extra chromosome has opened up new worlds for us, introduced us to people we would have never met and brought experiences we never would have had otherwise.

That extra chromosome helped make my daughter who she is today. It has given her an innocent view of this sometimes harsh world and allowed her to love with a pure heart.

But...

If I had the choice, would I choose to have Down Syndrome? Would I choose to be 'blessed' like that? Hmm, I don't think I would. The world often treats Beth unkindly, they view her as 'less than' and I don't think I would choose that. It would be hard to walk in her shoes.

Maybe, like you said, it's not a blessing or a burden.

It just is.

Some days we can see all the great and wonderful things about Down Syndrome and other days the hard things keep us from seeing anything.

I like how it always seems to come down to one word: Normal.

Substitute the words Down Syndrome with anything: some days we can see all the great and wonderful things about... marriage and other days the hard things keep us from seeing anything.

Some days we can see all the great and wonderful things about... college and other days the hard things keep us from seeing anything.

Everyday LIFE is great and wonderful and hard and scary. Maybe that extra chromosome doesn't make that much of a difference after all!

It's not a blessing or a burden. It just is.

Just Haven't Thought About It Much

This summer just flew by. We had a great summer with a lot more sunshine and blue skies than we normally get here in Seattle.

There were car shows:

 

 

 

There were fun days at the park:

 

 

Then one day, the weather changed. The sky got dark and the rain began to pour. We even had a small tornado touch down just south of us! It's been dark, cold and wet ever since. I can't believe summer is over and it's October already.

Beth has her Special Olympic tournament this month. I have a big meeting for our upcoming Thanksgiving outreach. A few of us need to update our food handlers cards. Diana is planning a big trip for next month.

For us, the year isn't measured in back to school shopping, parent-teacher conferences or Spring break. The kids are grown and life has changed. We don't see the changes in how fast they grow out of their shoes or if they need a new backpack so soon. 

Except for the changes in weather, life goes on pretty much the same week after week, month after month. I've been reading your 31 For 21 posts and to be honest it caught me by surprise this year. I hadn't even considered posting every day for the month of October. At this point, October is just another month. 

Well, sort of.

See, Beth was born on October 10th. What a week that was! I'm sure most of you can relate. :)

Then, two years later on October 6th, beautiful baby Sharaya was born.

So for us, October is a big birthday month. I've posted before about how we celebrated their birthdays together until Sharaya was about 10. She came and asked us if they could start having separate birthday parties. And that's the way it's been (for the most part) ever since.

So this weekend we'll celebrate Sharaya and next week it will be Beth's turn. There's lots of shopping, wrapping and planning going on.

And with my scatterbrained mind, I'll also try to remember that it's Down Syndrome Awareness Month. :)

Happy October!

Seeing the World Differently

When Beth was born I remember searching for pictures and books that would show what our lives would be like when she got older. What do adults with Down Syndrome look like? How do they act? What are their families like?

With no internet back then, I basically had encyclopedias and outdated books from the library. The hospital gave us one that was in black and white and only had drawings, no photographs. I think it was from the 60's. To this day I remember the desire, the ache to know what life would be like when she was an adult. 

Today, I'm living in that future and it's not as big a deal as I first thought. If I had known someone who had a grown child with Ds and they told me that their child did this and that, I would have assumed Beth would do this and that too. But I'm older now and I realize that people with special needs are as different as everyone else. Just cause your child does something doesn't mean mine will and vise versa.

Our day to day life can be pretty boring. I keep teaching Beth, keep showing her how to do things. Things my other girls picked up naturally. Cell phones for instance. Beth turns her ringer off all. the. time. I got home home from work yesterday and went downstairs to say Hi. She immediately asked if I got her text. I told her I did and that I replied to her, did she get MY text? No. Then she started to dig in her purse to find her phone. Which means she sent me the text, then tossed her phone into her purse.

She called the house earlier today and I was out pulling weeds. By the time I got to the phone, she hung up so I called her back. It went straight to voice mail so I expect her ringer is off and she didn't hear it. So now I don't know if she was upset about something or just calling to tell me what she sang at karaoke or to ask what we're having for dinner tonight. I went back to pulling weeds and starting thinking about how I need to explain to her - again - about keeping her phone volume up and keeping it near her if she's texting or calling people.

Then I starting thinking about how I never had to explain that to Sharaya and Diana. They just knew. In fact, they explain things to ME, "Mom, we use vowels now when we text." Oh.

Beth still needs to be taught so many things that I figure she should just know. Like the phone thing. Or laundry. She pours the laundry soap in. POURS. I tried showing her the lid with the lines inside to help you measure... but those were hard for me to see, and I wondered if they were hard for her to see too. So I bought a small measuring cup and explained that she only needs a certain amount... problem solved. Now she uses the measuring cup every time.

What will life be like when your child grows up? Pretty basic. Some days will be down right boring. And it may look very different from ours. But I think, especially if your child lives with you into adulthood, that there will be times when the usual just won't work and you'll need to adjust. Adjust teaching methods. I think you'll always be teaching. And I think you'll see the world differently.

This Isn't It

If you're looking for a post that is gonna make you feel good about your adult with Down Syndrome, a post that talks about the huggy-bear kissy-face life with an adult with Down Syndrome, this isn't it. If you don't want to hear about the hard stuff, you may want to stop reading here.

The last couple of weeks have been hard to understand with Beth. Mentally, physically. I don't know whats going on but, well here, let me just tell you.

As she was leaving for work recently I asked her if she had her phone. When she's on her phone, talking or texting, she feels like everyone else. It's her lifeline and she hates to be without her phone. I know this, so I wanted to make sure she had it. She told me, "Uh, yea!" in a very snotty, I'm-an-adult-and-I-don't-need-you-telling-me-what-to-do kind of way. She left and a little while later I walked into the office and lo and behold, there was her phone hooked up to the charger. Later that night she called the house and Chuck could tell she had been crying. I guess when she tried to call us and realized she didn't have her phone, she had to ask a co-worker to use theirs.

A couple days later I got a call and she was sobbing. Absolutely sobbing. Through her tears she told me that she had forgotten her bowling ball. She goes bowling in the morning, then straight to her job class. I figured she left it at the bowling alley and I just figured I would call them right away to make sure they knew it belonged to someone from the All Aboard group. I finally got it out of her that she left it at job class. Whew. That is a small office that works with adults with special needs. A safer, calmer place and I knew they would still have it. They did and her job coach brought it to work later that week. But Beth was a basket case on the phone. I had to calm her down and reassure her that she would get her ball back.

A few days later... I walked into the kitchen to see her fixing a tuna sandwich. I asked her if there was more tuna in a container in the fridge. She opens the door and pulls out a small container of tuna. I told her that whatever she doesn't use she could just put in that container. "Okay." Then she looks at me and slowly pulls back a paper towel that was wrapped around her thumb. A paper towel soaked in blood. "Beth, what happened?!?" She didn't say anything. Just pointed to the partially open lid of the tuna can. Oh my word! I turned on the cold water and stuck her thumb under it. I was afraid to look at it. I pulled it out from under the water and could see an L shaped cut, then the blood began pouring again. To make this long story short, we discussed, blood pressure and clots... It wasn't as bad as I thought it was gonna be and after a few minutes, the bleeding stopped and we were able to just put a bandaid on it. Oh my word. Seriously??

The next day... (yep, it keeps going) I came home from work and she was in the kitchen. I was gonna fix some lunch and we're talking when all of the sudden, she opens her hand to show me this long, huge chunk of hair. Honestly, I held it in my hand for maybe 30 seconds, not saying a word. I didn't know what to say! My mouth was open but no words were coming out. What...? How...? Why...? Then she said she was trying to get the snarls out. Oh my word. "You need to use a brush!" Why on earth did she think cutting her hair was the answer?!? I asked her to take out her pony tail and then entire left side of her head was cut about to her shoulder. But not a nice clean cut, oh no. Some to her ears, some to her shoulder... I told her we were gonna have to cut it short to make it all even. "Noooo!!" I asked her if she would rather have Diana cut it and she said yes. So, on Monday night, Diana got out the scissors and began to cut and trim and style.

Oh my word. Life with kids is messy. But it's different with kids who have special needs. My other girls would NEVER think to take scissors to their hair to remove snarls. If they cut themselves, they automatically know what to do. But lately Beth doesn't seem to have a clue. It's like she's lost. Like she's lost all ability to function normally. To think rationally about basic things. I'm concerned. And a little nervous about what might happen next.

Before

 

 

After

Everything has turned out okay. Beth wasn't seriously cut on the tuna can. Her hair cut turned out cute. She got her bowling ball back... I'm trying to be grateful for they way things have ended up, but it's nerve-racking and emotional to suddenly have all these things happen. Especially when you can't explain it.

31 For 21 - If I Had A Chance To Say One Thing

October 31st. The last day of Down Syndrome Awareness month. I feel like I failed. I don't believe I brought awareness to anyone outside the Ds community. I posted (almost) every day... to other parents who are already aware of Down Syndrome. But if I had an opportunity, say a commercial spot that would be broadcast to the world, or maybe my state, or city, what would I tell them?


Just say Hi. When you walk by, just say hi to her. She's a person. She has hopes, dreams and goals, just like you. She has hobbies, just like you. She laughs, she gets her feelings hurt, she loves, she cries. She wants people to like her, just like you. She likes to hang out with friends, just like you. She's compassionate. She doesn't judge. Give her a chance. Just say Hi. You may find that she's more like you than you know. You may find that you have more in common than you expect. You may find that she's the lifelong friend you've been looking for. Just say Hi.


I've been thinking about this for a few days now but still don't feel like I could say anything that would change the world. Plain words aren't going to do it. People have to want to change. People have to begin to think differently. But what if my words change just one person? What if it did bring awareness to someone, just one, who could then change the world of someone who has Down Syndrome?