So We Let Her Go With The Bright Pink... With One Stipulation

Remember when I said we tried to talk Beth out of painting her room a very bright pink? Well, we decided it is her room after all so we told her she could paint one wall the bright pink but the other walls would need to be a softer shade and she agreed. 👍 

This is what the room looked like before we started painting. Diana painted it this way when it was her room and she did it completely by herself, all in just one weekend! (And she painted two other rooms as well that weekend!)

In this picture I'm standing by the door looking back toward the bedroom. She doesn't like sleeping in the actual bedroom so that will become her kitchen. We'll put her dining room table in there and her refrigerator and kitchen cabinets. This large room will be her bedroom on one side and her living room on the other.

This is after I had put on the primer. When the guy at Home Depot heard what colors we were trying to cover, he suggested I use a gray primer rather than white. It was a great idea, but the color he gave me was way too dark of a gray. We ended up having to do two coats of the pink to cover the gray. But I love doing a gray primer! It covered the original paint really well.

 She chose such a light pink for the rest of the room that it really compliments the bright pink. I like the way it turned out!

Now we just need to clean everything up and bring her furniture back downstairs. I'm so ready to have my house back and she's ready to have hers! 

A Recent Shock in the Rear View Mirror!

Sharaya sent me a text saying her car broke down and she had to have it towed and she was having a reeeeaaally long day and... could her and Allie come over for dinner?

Absolutely! I asked her what she wanted and went home after work prepared for her and Allie to hang out.

The loaner car she was given was a Ford Exhibition, the thing was huge compared to her car! I stood on the porch as they got out and Allie wanted me to come see their car. She wanted to keep it! 

I looked around the outside for few seconds and then climbed into the front seat. It was so nice inside! I looked in the rear view mirror and there was Diana sitting in the back seat!!

Aaahhhhhhh!!!!! 

I jumped out of the car - I think I was still screaming - "Oh my gosh!! Oh my gosh!!" I gave her a huge hug and asked her what she was doing here!

"It's Mother's Day."

She had flown all the way from Pennsylvania to spend this weekend with me! Makes me cry all over again!

Sharaya had known for a couple of weeks and was able to keep it a secret from me. They also didn't tell Allie and surprised her at school just before coming to our house. Actually, no one knew! Diana surprised Chuck and Beth as well!

This is me and Diana in front of the loaner car. It's a re-creation because we were too excited to take pictures the first time! 💖

 

We spent time at the beach, went to Revelation Yogurt, it was SO good to hang out with her!

 

Allie loves to climb!

 

Downtown Edmonds.

 We went out to eat on Mother's Day, then came back here to open gifts, play board games and of course take some family photos!

I hope your Mother's Day was filled with fun surprises too!

A Sibling's Perspective

When Beth was born in October of 1984, we didn't know that she had Down Syndrome. They told Chuck that night, while she was being measured and weighed, and they told me the following morning. What a roller coaster ride that was!

Two years later (almost to the day!) I gave birth to Sharaya. This girl is the most sweet-spirited, gentle soul you will ever meet.

I still remember the day that Sharaya surpassed Beth in life. Beth was 6 and Sharaya was only 4.

 

Since that day, Sharaya has coaxed Beth out from under a desk at school, been her partner in numerous kids choir concerts and defended her against bullies. So many things went on that I didn't find out about until the girls were adults. Even the other day, after reading Sharaya's blog post Chuck asked me, "Did you know about that?" Neither one of us did.

With permission, I'd like to share with you one siblings perspective about growing up with a sister who has Down Syndrome.

 

what could have been

Whenever someone asks me if I have any older siblings, I always say "Yes, but my older sister has Down syndrome." And there's a lot that's held in that "Yes, but" that people don't necessarily realize. "Yes, but I didn't grow up with an older sister who showed me the ropes or gave me advice about boys. Yes, but I didn't have an older sister who taught me about make up and hair or helped me learn from her mistakes. Yes, but I didn't get all the things that come with an older sibling. Yes, but...it wasn't what it could have been." I love my sister but I have always longed for that older sister I never got. The older sister I had to become in place of the one I often needed. Who knows where my life would be right now if I had someone ahead of me, guiding me and showing me what NOT to do - what roads to take and which to avoid. 

The dedication to normalizing special needs kids is awesome and the mantra of "their lives are just like yours" is great and all but my life growing up (and still often now) is quite unique and challenging and that was always obvious to me even at a young age. As a kid who was bullied in elementary school for being the sister of a "retarded kid," it was MADE obvious. Thankfully we've come along way but growing up 30 years ago with a sibling with Downs was not a walk in the park. It was a life filled with bullies, loneliness and isolation. 

I didn't grow up with a big sister. I grew up past my older sister. I did all of the huge milestones that come with adolescents like getting my license and moving out of the house, all the while having this constant guilt-filled sorrow knowing I wasn't the one supposed to be doing these things first and the one who was, was just as heartbroken. When I announced my pregnancy 8 years ago, she didn't talk to me for 4 months and we both knew why. It wasn't supposed to be me. 

So when you ask if I have any older siblings and I reply, "Yes, but..." I really mean, "You have absolutely no idea."

 

This Whole Marriage Thing - Should They Or Shouldn't They??

I keep going back and forth about Beth and Nick getting married. I sat on the couch the other day thinking about what would need to happen if they really do get married. I think it came down to just 4 or 5 things.

The number one thing is birth control. Beth does not want kids. Nick does. I know Beth is not capable of raising a child. From what I know about Nick, he isn't either. This is something we would need to sit down and talk about, and maybe talk about this over the course of many months. I would want Beth to have a hysterectomy or have him get a vasectomy. I know whether or not to have children is ultimately their decision but this terrifies me.

Beth absolutely, positively doesn't want to move out so that would mean Nick would move in here and they would live in the apartment downstairs. Okay, that could work.

We'd need to put in a bathroom downstairs, toilet, sink and at least a shower. That would take a little time to save up for, maybe his folks would be willing to help a little with the cost?

He would need to get a job coach to help him get a job or a volunteer position somewhere. Right now he lives with his parents and they're retired. He goes out twice a week, the rest of the time he hangs out with his parents. Beth is gone 6 days a week. Chuck and I still work. Would he just hang out in their apartment all day? I think he would be bored to death! So we'd have to find something for him to do.

Maybe I should quit my job? Become a caretaker of sorts. Who would take them to the doctor if they got really sick? Who would help them pay their bills, buy their groceries, call in their prescriptions? I know they can do most things on their own but who would help them with the rest? Maybe I could help them and continue to work.

So I sat down with Chuck and told him that I really thought we could make this work. Maybe they really could get married! But then he brought some things I hadn't thought of before.

Yes, Beth and Nick love being boyfriend and girlfriend but could they really live with one another? Twenty-four hours a day, seven days a week for the rest of their lives? Marriage is hard!

Beth is quiet and needs her alone time. 

Nick is very talkative and loves to be around people.

Beth is shy and is learning to even just look at Nick, look at his face when he talks to her.  

Nick often forgets about personal space.

They both have their daily routines and I know Beth doesn't like it when her routine is disrupted. 

Beth is very passive and Nick can be controlling. That may seem like a perfect fit except that Beth does not like to be told what to do. She's an adult and can make her own decisions, thank you very much. Although she won't tell you that. She'll just stomp her foot or begin to cry or sit and pout (yes she still sometimes pouts, although it's rare nowadays.)

Nick has grand ideas - he and Beth will get married and drive to Los Angeles and he'll be in the movies. And be a fireman. And they'll buy a big house. And they'll have lots of kids...

Beth doesn't want anything to change. She likes her life just the way it is. 

I know she doesn't understand what marriage would require of her and I know she doesn't know how to argue or stand up for herself.

Would getting married be the best thing for these two?

Would Beth be able to live so close with someone else? Would Nick? 

Even if we could figure out all the 'simple' things like putting in the bathroom, what about the emotional aspects of marriage. Marriage is hard and it takes compromise and trust and teamwork and selflessness and commitment... Are they truly capable of making the decisions and choices that come with marriage? Do they have the mental and emotional stamina? 

Beth told me the other day that Nick is planning to buy the engagement ring.