Fall 2012

Fall 2012
[learning to live a perfectly imperfect life]

Bits and Pieces

Rylee had an appointment with her ENT a few weeks ago... it was her follow-up from her tonsillectomy.  He said that her tonsils... well, the spot where her tonsils used to be anyway... looks good.  He did say they were scabbing over (sorry, hope you didn't just have something to eat) but were healing well.  

Her doctor did ask how we thought she was sleeping since her surgery.  

Lately Rylee's had a tendency to request either Jeremy or I come sleep with her in the early hours of the morning.  Okay, to put that more bluntly -- she hollers from her bedroom door until one of us comes quickly down the hallway so she doesn't wake up Carter!  

So, because of that tendency, we know how she's sleeping -- and it's much better!  She still snores a little, but we don't hear any pauses in breathing, and we know she sleeps more soundly.  (We can sometimes sneak back out of her bed after she falls asleep -- before surgery, she would wake right up and be sure we weren't going anywhere!)  She's not complaining of being tired during the day, either.

So, I'd say SUCCESS!

Her doctor didn't mention anything about a follow-up... um... you know.  The "double s" experience. (Remember, the poor girl has already had two of them -- if you'd like to re-live it, here's one and two.)  I, on the other hand, prefer not to relive it.  As you can see, I can't even get myself to say the phrase.  Needless to say, I didn't ask her ENT about it, and I don't plan on it.

I just don't think either of us could handle another one.  And besides.  Rylee's a Kindergartner. And Kindergartners are just much to old for that kind of stuff.


I was getting a cart at the grocery store.  I stood patiently waiting for Carter, who was eyeing the stuffed animals in one of those grabber machines they put in the front of the store to tempt you into spending your money -- which, if you give in and give your child money, actually becomes a lesson in accepting disappointment for your child, since that grabber claw gets really close to grabbing a chubby little arm or leg of a not-so-cute  stuffed animal but then drops it at the last minute.

So, I was feeling a little impatient.  (I had about 14 errands to run and only 2 hours to run them.)

Me: "Carter, come please.  You need to be my helper since Rylee is at school."

Carter: "Umm... I'm busy."

Okay then.  Sorry to have bothered you.  I didn't realize Carter had his own agenda that morning.

Little bugger.


Several years ago, a book called Gifts was published.  This book is a compilation of stories by Moms, reflecting on how their children with Down syndrome have enriched their lives. Unfortunately, I didn't hear about this project until after the submission deadline.  (I would have loved to have written about Rylee for this book.)  Though Rylee's story is not included, there are 63 other amazing children's stories, and it's heartwarming to read -- whether you have a child with Down syndrome or not.

When I heard about submissions being accepted for a follow-up book, Gifts 2, I was thrilled! "Stories about individuals with Down syndrome, written by a wide variety of individuals, including parents, siblings, grandparents, neighbors, teachers..."  Yay!  "Parents!"  Here was my chance!  Oh, wait.  "The stories in the 1st volume of Gifts are written by mothers.... the primary purpose of Gifts 2 is to feature stories that offer other perspectives and experiences."  Oh rats.

"... Parents..."  Though Jeremy has many abilities, he doesn't consider himself to be much of a writer.  So, there went that option.

"...Grandparents..." Hmmm... this might be just the thing!!
My mom wrote a story about her experience when Rylee entered our lives, called "Making the Best of Us." I am so proud that it will be included in Gifts 2.  The editor asked that photos be included of the author of the story and the individual with Down syndrome.  Being the self-less person she is, my Mom wrote very kind words about me and asked that the picture include me. So, these three smiling faces will peer out from a page in the book.

Gifts 2 is now available for pre-order (through the publisher Woodbine House and also through Amazon) and is expected to be released in September, just in time for Down Syndrome Awareness Month in October.  So, go out and order yourself one.... or three.

I think you'll find on page 109, there's an inspirational story about a remarkable little girl named Rylee, written by her extraordinary Grandma Cindy.


my family said...

Hi, I just found your blog and your family is precious. I read the letter: You don't know me...and I was wondering if I could post it on my blog in Oct for DS awareness month.

SandyGM said...

Can't wait to read it!! Wouldn't Grandma Groom be so proud!!

Sharon said...

I just ordered Gifts 2 and can't wait to read your mom's story! Love the picture, too.

Hector and Jennifer Varanini Sanchez said...

I just ordered 19 books!!! From my "i did it" campaign! I can't wait to read your mom's story and I'm so thrilled too to be one of the contributing authors!!!!!
So fun!

Mer said...

I'm enjoying your blog! So exciting that Gifts 2 will have a bit about Rylee! We're over at http://chaseandmore.blogspot.com :) I'm looking forward to reading more about Rylee!

Jeremy said...

How did I miss this picture?
I love it!