My Name is Sarah

MY NAME IS SARAH. I am a quilt designer and the sewcial director of Sarah's Sewcial Lounge. I also have a business called Down Right Charming. I sell my quilts mostly on etsy and I make pillowcases to donate to patients in the hospital in memory of my friend Kristen Kirton. I am a young adult living with Down syndrome. I hope you enjoy reading about my life journey.

Tuesday, February 16, 2010

In a Funky, Funky Chicken Mood

A message from Joyce:

Tonight at dinner I told everyone I was in a funky, funky chicken mood. Sarah said, "What kind of chicken?" I repeated funky, funky. I can't really put words to it. Something just seems off.

It started with Matt being late to school. John usually gets him up, but unbeknown to me he went out to shovel the driveway and I fell back asleep. Into a deep, deep sleep which is rare for me. When John came back in he asked, "What's wrong with Matt?" "Nothing," I mumbled. "Why's he still in bed then?" "Oh $h*t," now I was awake.

Then I had to call the insurance company to let them know that TJ was involved in the 45 car/semi pileup on I-71 near Columbus yesterday. Did you see it on the news? It closed I-71 for hours. Apparently the newswire made it all the way to Tokyo. If you have been following our story for long, you may recall that this exact time just two years ago, TJ was hit by a semi on this same highway. Fortunately, once again he walked away and this time his car was at least driveable, but does have significant damage.

Then I opened yesterday's mail. I got a lovely notice from my credit card company. Just because our wonderful politicians have decided to stick there neck into credit issues, I now get to pay a new $100 a year fee. Oh and by the way, your new interest rate will be 26.99%. WHAT!??!! That's the thanks I get for paying my bill on time for years and having an excellent credit score, despite having thousands of dollars of medical debt.

Then there is this whole Sarah Palin thing. It disgusts me. I feel like Down syndrome is being drug through a mud bath. I hate the way this is being made into a political quagmire.

It doesn't help that I have shoveled the driveway three times today. And it is still snowing.

I think what furthered my funky, funky chicken mood is a blog. Ellen from To the Max, who I so admire, wrote an awesome post today about future employment. It wasn't her words that hit me though. It was the comments. I'm not even sure why I took the time to read them all, but I did. I responded to one of the comments. But what has me more bothered is a pattern that emerged in a few of the responses. Basically it goes like this: the mother/grandmother of an adult with a disability babies/shelters/alienates said person, but once they get into a group home they thrive. And it made me stop. Stop. dead. in. my. tracks.

It made me stop and really look at myself. Do I baby Sarah? Am I getting in her way of personal growth? I do want her to be able to move out. There is one problem though. Sarah is number 2004 on the wait list for a waiver to pay for a group home placement. She will likely be into her 30's before her number is called. And so I have been pondering this all day long. Do I shelter her too much? This question would probably have kept me up all night, except...

...just a few moments ago I read a comment on our blog. From a dad. A dad who did let his daughter go, all the way across the country to serve as a missionary. So on Valentine's Day 2010, she could knock on our door. And we invited her in. Why? Because I have gotten to know many friends from our blog who have shared their Mormon faith. And with that faith, I understand there is a greater mission, a divine plan. One that I need to remember will guide me, especially during the funky hours.

15 comments:

Carol N. said...

I hear you Joyce - I wonder the same things and Aidan is only 3 1/2. From what I can see you guys have an active, loving, caring home environment and Sarah is thriving. I don't know many people with a following like Sarah has - via the blog - we're part of her larger group home in a way - the group home of the blogosphere!

ParkerMama said...

I read the same post you refer to. I had to choose to walk away without commenting.

Maybe I'm the odd Mama out, but I do grieve the person Parker was supposed to be.

I look at him and see exactly who he was meant to be.

My job is to make sure he has the opportunities to reach every ounce of his potential.

starrlife said...

Hmmmm... some days are just that way Joyce. Yours sounds like a doozy and deservedly funky funky!
As for the comment- yikes! Such a touching post and such a thoughtless comment. It is funny(not haha) how sometimes people fall into the trap of comparing disabilities? I have never grieved the person my daughter was meant to be since she was always just her and I'm crazy about her just as she is. Would I relieve her of some of the disappointment she might feel in her future- sure but that is the same I would feel for any of my children since I feel life is full of disappointments for most people :)
As for the group home- it seems like you guys give Sarah alot of independence. I, for one, am not automatically a fan of group homes but I do spend time considering our options, like a cottage on our property or buying a house, being a landlord and renting out to my daughter. But being she's 10 we have a few more years to go- she's already been instructed that she's not to marry until she's 30,LOL!
Hugs!

Brandie said...

I read that post, too. But I didn't have time to read all the comments. My uncle also has a disability and lived at home with my grandparents until they passed away when he was 50. I don't think my grandma "babied" him, but he didn't have the social contacts most of us do. Then again, that could have been his choice, too. He lived with my dad for a while, but my dad had very little patience with him. Now he is in a group home and seems to enjoy it. He has made friends and is able to contribute by helping with the laundry and lawn work. The owner thinks he could live more independently, maybe with one other person, but my dad doesn't believe it. I'm not sure, but I don know that my grandparents did the best they could with what was(n't) available at the time.
As for the credit card, I got the same letter from mine!

Emily said...

So many points in this post... the future really scares me. You are an amazing Mom to Sarah! Only you know what's best for your wonderful daughter!

Scarehaircare said...

Sarah has a job. She rides horses. She has friends. If she gets sick, she has family close. Sounds like a wonderful life. I don't think she is sheltered at all.

Off to find that blog post

Leah said...

I think most of us baby our kids with disabilities. And, to some extent, our typical kids too. Remember the post you made about Sarah brushing her teeth when she got home? (or something along those lines.) She showed you she was capable, and probably had been for while, you just weren't able to see it. I know there are similar things in Angela's life where I haven't allowed her to do something, and it's only when she's with someone else and does it HERSELF that I find out...oh...wow...guess I've been doing too much! Angela doesn't WANT to live at home. She's been telling me for a almost a year, "Mom, I'm getting a NEW house. Not you there. Not Dean there. Just me. And Adam." I have a very good friend who's daughter is now almost 30. When she was 16 or 17 they built the most amazing addition onto their basement. It was a 2 bedroom apartment. The second bedroom so there was a place for an overnight caregiver to stay. One of their older kids rented it until their daughter with DS was ready for it. Then, when she was about 24, they started talking to her about it. She was P.O'ED!!!!! She didn't want to live with her parents! She wanted to move out...with her friends...just like all her other friends were doing!! And so she did! They were lucky, and live in a more rural area and were able to find just the place for her relatively quickly. (2 years, that's FAST!) Although for years I've had a plan in my head to build small 1 bedroom cottage on our place, or an apartment over the garage, Angela, at 13, has made it clear that MY plans are not HER plans, and I better get over it.

Rochelle said...

So sorry Joyce for the funky day you had yesterday! Also sorry to hear about TJ, very thankful he is ok again.

You are so right Joyce God does have a plan for each of us and it will get us through anything.

You and Sarah sharing your lives is such a huge inspiration to so many of us. Thank you!

From following you it looks to me like you are raising three independent, caring and great kids.

I think you are doing a great job of supporting Sarah without holding her back.

Tsquared417 said...

I wondered what you thought about that post. I have a love/hate relationship with those types of posts. I'm so sorry you're in a funk. Sending you a hug!!

Ellen said...

OMG! I can't believe TJ was involved in that crazy accident. What's up with his car karma?

Joyce. I had your day yesterday, too, compounded by reading the same comments on my post. I waivered on whether or not to put it up, so I was glad to hear you appreciated it even if a comment troubled you. Even reading comments here gets to me. Tammy, it is awesome that you do not grieve who Parker was meant to be. Make no mistake, though: My grieving does not mean that I am not giving Max every opportunity to succeed.

I also worry about babying my kid. Obviously, Max is younger than Sarah, but I worry that we're setting the stage now for him. He is far more independent at school than he is at home, his teachers say that's not uncommon. For example, he totally feeds himself at school; at home, he wants us to do it. But Joyce, I agree with others here: It does not seem that you baby Sarah. She seems wonderfully well-adjusted.

Joyce, I did a post on the whole Sarah Palin/Family Guy thing for The Huffington Post, tell me what you think. I didn't find the show offensive at all—I thought the opposite. http://tinyurl.com/yhgplba

Anonymous said...

Hi Joyce - I am a lurker. I stumbled upon your blog from another blog that I follow ( My name is Sue and I'm a blogaholic)I very much enjoy reading about Sarah and her life and family and friends and accomplishments. For what it's worth - my husband's brother Joe was disabled. He lived a very active life at home while his nine siblings grew up, moved out, and had families. After my MIL died, my FIL decided to look into group homes with an eye to the future. There are several of us who would have happily taken Joe into our homes if anything had happened to his dad, but we did not live in the same city, and Joe was very much involved in community events, music and church. When a spot opened up in a group home, several family members, dad and Joe got together and made the decision that he should move. At that point, Joe was 45 years old and had lived at home in the same house for all of his life. Joe was excited and happy about the move. The group home gave him some independence that he hadn't had before and he adjusted easily. My FIL picked him up almost every weekend to go to church and have a family dinner. The weekends that he didn't come home were mostly because he had other plans! Three years ago he was diagnosed with terminal cancer. The group home staff had been aware of some changes in his habits and took him to the doctor. He had chemo and radiation and the staff from the group home sat with the family members through all of it. When he died he was surrounded by family including his group home family. No one could have asked for a more loving and supportive second family. It's obvious from your blog that Sarah lives a full and happy life at home. Perhaps at some point Sarah and your family will decide that a group home is something to consider. But you have lots of time to think and talk about it.

Carrie said...

Yikes! What a day! From what I've read, Sarah seems to be happy and well adjusted--and that's what every parent wants for their child. So I think you are doing fabulously well.

And how awesome is it that the Sister's dad got to see your blog and a picture of his daughter?!? My brother served a mission in Sweden and my mom would have done just about anything to see more pictures of him while he was there. Thanks for being kind to them!

Karen said...

I didn't comment yesterday because I ran over to read the comments on Ellen's blog. I love what you said there - and am incredibly inspired by Sarah (again) to be happy no matter what I'm doing. I wish everyone had her work ethic and was as happy to do their job as she.

almcl said...

I'm a first time commenter but have been following for a while. I think parents of any child or adult are capable of babying/sheltering their child. I'm a nanny to an 11 & 12 year old who have almost everything done for them (including flushing a toilet). It's a huge indicator of what their adult life will be like. But the main point I'd like to make is I think you have raised an incredibly intelligent, beautiful, and independent young woman. Also, handsome, intelligent, and independent young men. I know I'm just an outsider taking a glimpse into your world occasionally, but Sarah is thriving! Keep up the good work.

To Love Endlessly said...

Great post Joyce. Sounds like a funky chicken week to me! I can't believe all that snow. And I'm interested about the group home wait list. Why does it take so long?