WDSD - Still Growing and Learning

 Today is World Down Syndrome Day

Most people have 2 copies each of their 46 chromosomes.

People who have Down Syndrome have 3 copies of the 21st chromosome. So we now celebrate them on March 21st. Or 3/21

It was officially recognized in 2012 so for most of Beth's life it didn't even exist. We did 'a thing' for it a few years ago but mostly the day goes by without much fanfare.

But this year, Beth woke up, came upstairs and announced, "Today is my day!"

I got a text the other day telling us that Top Pot Donuts was selling donuts to celebrate people with Down Syndrome!

 Sweet! Literally!

A friend at church came up to me, grabbed my arm and said she just HAD to tell me... Beth had started a conversation with her. Just out of the blue. If you know Beth you know this is completely out of character. For those of you that don't know her very well, this is completely out of character! I didn't even know that Beth knew her. A said that Beth told her it was Down Syndrome Day and proceeded to tell her about the donuts, of how her grandmother had died... I was shocked! So was she! She said it was the first time Beth had ever talked to her besides saying a rather quiet "Hi" as she walked by.

And A was the second person this week to say Beth had just randomly started talking to them. 

It does my heart good to hear stories like this. To know she's still growing and learning and doing things that are hard.

We went out to lunch with Sharaya and Ally and afterward we headed out to get our donuts, only to find out the distribution center had a power outage last night. The store only got about 3 - 4 donuts and they were completely out. 

Well bummer.

From the back seat Beth says, "We could get cake or something."

So we stopped at QFC and bought some slices of cake that we split between the 5 of us. This 36 year old woman who sometimes forces herself to do hard things, who knows almost every musical by heart, who snorts when she laughs and who loves her family more than anything else on earth, was celebrated today.

 It's a journey we never would have chosen but it's one we wouldn't trade for anything in the world!

 Happy World Down Syndrome Day Beth!

Renewed Excitement!

I went to a Disability Ministry Conference today and I was 
reignited for my Sunday school class and this vital ministry God has called me to.

One thing that was brought up a few times is how you need to get the pastoral staff on board with your vision. It's one thing for them to tell you disability ministry is a great thing and you should run with it. It's completely different when they get behind the call, supporting it from the pulpit, getting to know those in the congregation who have special needs.

"If the pastors don't have the vision, the ministry will die."

So I'm going to begin again, praying that our pastors catch the Lord's vision for disability ministry at our church. None of our pastors or board members have children or close family members who have disabilities. I believe with my all heart that they care about those with special needs, but they're afraid. They don't know how to interact with them. I truly believe they just don't understand.

And deep in my heart I feel called to educate them.

I came away from the conference with renewed confidence that the pastors will embrace people with special needs and they will one day become active members of our church. Leading and serving in the body of Christ. I'm excited for this again!

Do you have a family member with special needs? 
Are they accepted at church or at school?  

Feeling The Loss Again, Like I Did When She Was Diagnosed

We were at church a few weeks ago when a friend came up to us and whispered to Chuck, "What is your daughter's name again?"

He said hi to Beth and then reminded us that they were in the youth group together. Of course! He's in his mid thirties, he's a guy she grew up with and they had some of the same friends. 

He's her peer.

But he's also been married for years, has three children and is a financial officer. His life is very different from Beth's.

The stark differences just... I don't know. It just left me speechless. 

I know Beth is different from other people in their 30's but I hadn't really thought about it in a while.

I haven't thought about how far behind Beth is from other people her age in a long time. We're just sort of passed that and we're living our lives day to day just like everyone else. 

But after hearing him say they were in youth group together just brought it all back.

And he wasn't being mean at all. He's an a-m-a-z-i-n-g young man, an incredible father and husband. He just stopped to say hi to an old friend.

And I'm finding it hard to describe the lump I have in my throat because of it. Because my oldest daughter isn't like her peers. Not even close. 

You know how you watch your kids grow and change and it's not too big of deal, but when you haven't seen your friends kids in a year, it's like, "Oh my gosh they're so tall!" I think if Beth was around typical 30-somethings all the time, it wouldn't be that big of an issue. But she's not and the difference between those two was just huge.  

After re-reading this I think maybe I'm grieving again. It hit me - again - that my daughter isn't normal, that she has a diagnosis that changes her life and ours. She won't move out and get married and drive her kids back and forth to school and take vacations with her own family... but even if she does one or two of those things, it won't be the same as when Sharaya and Diana did them. 

It'll be much harder and she'll need constant support.

I guess I'm feeling the loss of a 'regular' life for my daughter. Especially after seeing his life and realizing the huge differences between the two.

Happy Birthday Beth!

Like this year, October 10, 1984 was a Wednesday and Beth was born at exactly 10:00 at night. 10/10 at 10.

She was an emergency c-section and when Chuck held her for the first time, he brought her over for me to see (I was behind that blue 'wall' they put up so you don't see the procedure) and I remember thinking she was the most beautiful baby!!

Beth began sleeping through the night while we were still in the hospital... first Beth did, then Sharaya. I was spoiled!

(Our camera didn't work in the hospital although we didn't know it until days later when we developed the film.) 😞

One of her first car rides.

Beth was an easy baby. She slept well, although she couldn't nurse. As hard as she tried she just couldn't latch on but she ate well from a bottle!

   
I wouldn't say she was easy to raise but Beth is a gentle soul who keeps to herself and loves everyone she meets.

Two years old

I love you Beth! 

Happy Birthday!

The Burn Story Continues - On To The Wound Care Center

We saw the doctor again on Monday. The nurse 'S' came out to the waiting room and called Beth's name. We walk to the back and she weighs her and directs us to the room. She's talking to Beth a little differently, not bad or anything, just different from the usual, "Hi, I'm so-and-so and I'll be your nurse today." 

We sit down in the room and S says, "I have a sister who looks... exactly... like... you!" 

My face lit up! "You do?! You have a sister who has Down Syndrome?!"

"Yep! She's older than you are Beth but yeah, I do!" Awwe! What an amazing visit we had with her. Her sister is 45 and lives with their mom. She's beginning to slow down now but they still enjoy going to concerts.

S was so good with Beth. You know when you meet someone who just knows how to communicate and engage your child? You just wanna hug them and make them part of your family! 💖

Well, back to the reason for the appointment. When the doctor came in, we removed the bandages and we both agreed the burns don't seem to be healing like they should. Today marks 13 days since it happened and they're still very raw and oozing.

So now we have a referral to the Wound Care Center at our local hospital. They were closed when I called so I'll call again to get an appointment. Please pray with us that these burns begin to heal. I'm so, so thankful Beth isn't in a lot of pain, but oh, this can't be fun.

(I'll add a photo to the very bottom of this post. If you don't want to see them, stop reading here.) 😅
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Why We Chose To Keep Her

We found out Beth had Down Syndrome the night she was born. It was 1984 and the life expectancy for someone with Down Syndrome was 25 years.

When Chuck came into my hospital room the next day, he came over to the side of my bed, took my hand and said, "We can still love her, can't we?" To be honest, I had never considered giving her up. It never even crossed my mind, but when he said that I knew that he felt the same way and we'd definitely be taking Beth home.

Then the doctor came in and told us our options. We could take her home, we could put her up for adoption, or we could put her in an institution. I was surprised that putting your baby in an institution was still an option in the 80's, I thought that wasn't done anymore. I remember being shocked that he even suggested it. I don't know what options they give parents today but I hope that's not one of them. 

We told him that our decision was made, we'd bring her home. From that point on, everything was geared for that. The nurses taught me how to nurse her, and watched me dress her for the first time. Everyone's plan was for us to take Beth home and it really helped me feel 'normal'. There were so many other things that put me in a different category from all the other new moms and I was so thankful that the hospital staff didn't question us or treat us any differently. Once our decision was made, that was that.

Chuck and I were worried about how our family would respond to her diagnosis and we even talked about how we should tell them. We decided it would be better if they all found out at the same time and we started calling everyone and asked them to come to the hospital. Of course while we had them on the phone, everyone asked if I was alright and then they'd ask if Beth was okay but we just told them that there were some things we needed to talk to them about. 

I was holding Beth when they all trickled in. We definitely wanted Beth there when we told them. We said she was showing signs of Down Syndrome, then we kind of held our breath for a minute. But we didn't need to worry because they were so supportive! One by one they started asking us questions about Down Syndrome, about what her development would be like, and they all wanted to hold her.

Even with family support we knew it wouldn't be easy. Actually we didn't know what it would be like, but we knew we would take her home, love her and just take life one day at a time. She was our daughter and it didn't matter if she had a disability or not, we were taking her home.

Beth at 5 months 

We chose to keep her because she was our daughter and for us, there was no other option.

I Was Watching TV When A Familiar Face Came On The Screen

I was pleasantly surprised!

Gosh she was so cute!

Just an average commercial.

About two kids playing with a toy.

Great job Fisher Price!

I've always liked you!

A Chance Meeting

I took Allie to her swim lesson on Saturday and we sat down near where she had her lesson. When the coaches came in, there was a little shuffling around and then Allie went with another coach. I asked one of them what was happening and she told me that one of the students needed some one-on-one time so Allie was joining the other class. Okay, but now she was all the way down at the other end of the pool. I started to get my things so I could go down with her when a young mom with two kids came and sat next to me. I instantly recognized one of her daughters.

I asked her if her daughter had Down Syndrome and she kind of defensively said yes. When I told her that I had a daughter with Down Syndrome, her face lit up! "Really?! How old is she?" I told her she was 31 and she become so serious and very quietly said, "So you survived?"

And she wasn't joking.

For the next hour we talked about marriage, siblings, sensory issues, puberty, stress reducers, therapy... She also has 3 daughters but her daughter with Ds (9) is her middle child. They live about 45 minutes from the pool but had heard about the great swim coaches here and they're willing to make the drive. She recognized Allie and was trying to remember what Sharaya looked like. Her daughter, by the way, did great in the pool!

When I got home I told Sharaya about her and she knew exactly who I was talking about! She thought her daughter had Down Syndrome but hadn't had a chance to talk with her. She's definitely going to look for her next weekend.

Allison did okay. She's very afraid of the water but is getting better. Her lessons aren't really teaching her how to swim as much as allowing her time to get used to the water. I took these pictures at the end, during their free time.

To You She Looks Imperfect

'I know what you are thinking. You need a sign. What better one could I give than to make this little one whole and new? I could do it; but I will not. I am the Lord and not a conjuror. I gave this one a gift I denied to all of you - eternal innocence. To you she looks imperfect - but to me she is flawless, like the bud that dies unopened or the fledgling that falls from the nest to be devoured by ants. She will never offend me, as all of you have done.

She will never pervert or destroy the works of my Father's hands. She is necessary to you. She will evoke the kindness that will keep you human. Her infirmity will prompt you to gratitude for your own good fortune. More! She will remind you every day that I am who I am, that my ways are not yours and that the smallest dust mote whirled in darkest space does not fall out of my hand.

I have chosen you. You have not chosen me. This little one is my sign to you. Treasure her!'

From Morris West's The Clowns of God

Beth - 1986

"Let me win. But If I Cannot Win, Let Me Be Brave in the Attempt"

Beth took part in the Special Olympics bowling tournament last weekend. She looks forward to it every year. Generally the girls bowl in the morning and the guys bowl in the afternoon.

 

Every year it seems like there are a thousand people packed into that bowling alley!

 

 

And this was before the afternoon teams arrived!

We all got settled, the bowlers got their name tags and bowling assignments and all the computers lit up. (Thankfully the alley had put the names in ahead of time!) Of course, we got there early to be sure we'd get a seat. Beth was ready and waiting for everything to begin. 

Her team is the Mukilteo Pinbusters

We sang the National Anthem and said the Special Olympics creed.

 

Let the games begin! 

 

 During practice earlier in the year, they take the average of each bowler and then for the tournament, they place them with other bowlers in the district with similar scores. So you don't have someone who bowls an 80, competing with someone who bowls a 140. Each member of the team bowls about the same.

Checkin' her score

 

 Unfortunately Chuck had to work and Sharaya had another commitment so it was just me and Diana there cheering her on. (You can see Beth over Diana's left shoulder.)

 

We waited for everyone to finish bowling and then they had the award ceremonies. They have each team stand up and hand the medals out right there. There's no real fanfare. In fact, they didn't even use a microphone this year so I never actually heard them say her name.  

 "And the gold goes to... Elizabeth Anderson!!"

 

Yep, she won the gold this year! I think this is her first time! In years past she's won the bronze and silver, and one time got the 4th place ribbon, but this year... the gold!!

We're so proud of her! Way to go Beth!

 

Taking a Back Seat

Blogging seems to be taking a back seat to life these days. And after reading some of your blogging posts, it seems I'm not alone.

I think so many moms are now posting on Facebook, asking questions, sharing pics and stories of their day to day activities, blogging just doesn't seem as necessary. I don't post too often, but I like to read about what others are doing. I'm getting annoyed with all the videos though, I want to hear about your lives, your kids. But I can't complain because I don't post about my life or my kids! :)

So, that's why there hasn't been much activity on here lately.

Chuck still hasn't found a job. He's had a few promising interviews and now we're just waiting to hear back. Waiting can be the hardest part.

Beth is getting over a cold. It seems she always gets one this time of year, when the weather changes for real and her nose gets cold and dry. She's better today though and has gone to work, the first time she's been out of the house in 4 days.

Sharaya and Diana just went to see The Hunger Games - Mocking Jay. They both loved it! This is the first Hunger Games movie Diana hasn't seen at the premier in London. She was so disappointed she didn't get to go this time!

Sharaya and Allie went to Disney On Ice last night and had a great time. Allison sure loves her Disney! Of course, so does Sharaya. I still remember her reaction when she got her first Jasmine Barbie all those years ago!

I'm gearing up for our huge Thanksgiving outreach next week. Our church puts on a dinner for the community and we serve approx. 1400 people in three separate seatings. It's free of charge and we serve the homeless, on duty police officers, single people without family in the area, anyone who wants to come and have dinner is welcome. They sit at round tables and are served by a table host who fills their drinks, offers seconds and prays with people if they need it. I lead the Condiment team. We provide the dinner rolls, pickles, olives, cranberry sauce... then after the program is over, we wheel out huge carts of slices of pumpkin pie, complete with whipped cream!

It's an exhausting day, but oh so worth it. A lot of planning and preparation goes into it and that's what I've been busy doing lately. Between work, and laundry and dishes... :)

I think about you all so often and hope things are going well for you.

"They Remind Me of Me"

Our Sunday school class was really full this passed weekend, we had 6 students and 4 teachers! We had one 5 year old and the rest were 12, 15, 20, 21 and 30.

We had a teachers meeting last night and one of the things we talked about was possibly needing to split the class into two, younger and older. There are 2 other preschool / Kindergarten aged kids plus a 5th grade boy (I'm SO thankful they all didn't show up on Sunday!) so separating the students would give us two relatively good sized groups.

One of the teachers asked what Beth thought about having such a diverse group each week. I'd never thought to ask her so this morning I did. She was eating her bowl of Cheerios and I asked her if she liked having the different age groups in our class. She said no, that she only liked having the little kids. When I asked her why she didn't want the older kids in our class, her response surprised me. She didn't hesitate in her answer, "They remind me of me."

I'll admit I was a little stunned. All sorts of thoughts ran through my mind and then Chuck asked from the living room, "Beth do you like the little kids better because you feel more like a teacher with them?"

"Yea."

"And with the older kids, you feel like you're just a part of the class?"

"Yea."

At that point her bus arrives so I wasn't able to ask her any more, but I've been thinking about this all day. They remind me of me. I wonder if it's like watching yourself in a mirror as you go about your day, seeing everything you struggle with played out right before your eyes? Like when you watch yourself in a video and see all your inadequacies?

Do any of the other kids feel like this? What can we do to change it?? I've got to find a way to help them see themselves the way God sees them, amazing, caring, beautiful people with gifts and talents that He wants to use to bless others.