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 journey.

Friday, February 17, 2012

It's a Catch Twenty Two...

By Joyce.  I have so many blog posts swirling around in my mind. I so want to document all the little things that are presenting lately. A real life glimpse into parenting a twenty two year old with Down syndrome. I just never seem to have time to sit down and write anymore.  But here goes...

We had a dilemma this evening.  Matt had a premier team soccer practice in a community about 45 minutes from where we live and he does not drive, so John needs to take him.  The store is open until 8:00 on Thursday evenings so I need to be there.  Sarah has been fighting an asthma episode for more than a week.  She did not want to leave the house but we never leave her alone at night.  We do not have anyone trained to come watch her (that's a whole different post and one I won't get into tonight).  So what to do?  What to do?  My husband and I discuss the situation.  We discuss it some more.  I mentally list off all the possibilities of things that could go wrong.  Sarah really does not want to leave.  She pleads to stay home.  So we let her.

I called her at 6:30 to make sure she was alright.  "Mom, I'm fine," she says.  I remind her I have to run to the post office as soon as the store closes and then I will come straight home.  Then the store gets really busy, and I forget about worrying that she is home alone.  The last customer leaves at 8:05. I quickly gather my coat and bag and head out the door. Just as I am about to get into the car, my cell phone goes off.  I glance at the readout and see it is Sarah.  My heart jumps a beat. 

"Mom, Don't forget to go to McDonald's and get me chocolate chip cookies."  I sigh deeply, an expression of my relief. "OK sweetie, I won't forget." I smile to myself as I realize that she knew exactly what time to call me.  She likely even understands that I have a tendency to forget things lately.  I think about how far her speech has come lately.  How pleased she is with herself when she stays home alone.

But then as I drive off, I start to question.  What would happen if that call was the neighbor letting me know the house was on fire?  Or someone broke in through the side door.  Or a deer ran through the sliding glass door.  Would I be held accountable?  Would I be judged on her being left alone.  Is leaving a young adult with diminished judgement alone wrong?  It's a catch twenty two, I've decided.


When I walked in the door, Sarah was waiting for me. She already had her glass of apple juice poured.  She had a napkin waiting, and her chair turned around to watch television while she enjoyed her snack.  She is oblivious to my insecurities about her staying home alone when it is dark outside.


When I questioned her on why she was having apple juice and not milk, she confidently reminded me  that she has had an asthma episode and milk is not good for the airway.  I'll leave out some of the not so pleasant details, and just say she has been self managing her episode better than ever.


And then she went about enjoying her chocolate chip cookies.  So I went about putting in a load of laundry, folding the towels that were in the dryer and making me some dinner.  The guys got home about an hour later.  No worries. Life does go on. Until the next little dilemma, anyway.    

9 comments:

Karen said...

Thank you for the honesty. These are things I worry about in our future. It's so reassuring to me reading here. Life does indeed go on.

Nan said...

YIkes, can I relate. All the way along. I do remember when Jess first walked to school alone across a very busy intersection (with no stop signs going in the right direction). This was high school, and she had a cell phone. And we had trained her and then faded support (I won't go into the long story about walking with friends, which is a positive story . . but ...) Well. Anyways. I do remember thinking: what if she gets hit by a car and they report it and everyone will be thinking: What on EARTH was that mother thinking? Not that that was my worst fear, but you know how you step outside for a moment. But it is a tricky balance in risk. And one that sometimes highlights new tasks. Like,I'm of course curious, training someone to be with her. AH, if only there was all the time in the world! BRAVO Sara!

Pallavi said...

I am feeling happy from inside :)
thanks for posting

Kristen's mom said...

Kristen got to a point that she was not going to leave the house. She wanted to stay home and there was really NO way to change her mind. This started a few years before 2008, so she was still healthy. We finally had to give in and we all took a turn staying home with her. At least for us, I had many options, hence 6 children, and a mom and dad who were 12 minutes away and willing to help. I could hardly even get her to go to the store. However, if it was her idea and she wanted to go somewhere she grabbed her purse and headed for the door. I wish I lived closer, I would love to come and sit for a while.

Cindy said...

I'm so glad to know I'm not the only one who does the 'what if's'!

Beth loves to stay home alone, except at dusk. All day, all evening but not between 4 and 6PM. We always get a call, "What time you coming home?"

But I tend to do the what if's, what will people think? What will this look like if something serious happens? I know though that people don't know Beth. They don't know that she IS capable of staying home alone. She IS smart enough to know she's not to use the stove, answer the door, etc. In Sarah's case, she's smart enough to know how to manage asthma. They ARE smart enough.

But will we worry? Heck yea. :)

Tiffany said...

I imagine myself having this same dilemma in 10 years...Sarah is truly a rock star!So are you Joyce!

Christine said...

Thank you Joyce and Sarah for sharing your life..your world. It is so nice to read post like this one and know what is to come in the future and overall that our children are o.k. and yes life goes on.

starrlife said...

yep- these dilemma's are certainly interesting aren't they? Evaluating readiness for home alone...I'd be stressed out too. Probably be parked outside or set up cameras :)

ABandCsMom said...

Your Sarah is AMAZING! She is such an inspiration to everyone. I always hoped that Carly would grow up and be like Sarah. I wish so badly she would have had the chance to show the world how amazing she was..but, I suppose it just wasn't meant to be that way. Nonetheless, your beautiful Sarah is one heck of a gal. She warms my heart. Believe me, the state my heart is in these days..it needs all the warming it can get <3