Fall 2012

Fall 2012
[learning to live a perfectly imperfect life]

And Celebrate We Did!






Lots of teenagers. Lots of dancing.

Were we nuts? Possibly.... but....

Lots of laughs and lots of fun!

Jeremy and I have a week to recover before Jordyn's birthday party with family... somehow, I think that one won't be quite so overwhelming!

(A big thank you to all of our friends who helped chaperone... definitely couldn't have done it without you!)

Happy Birthday Jordyn! Hope this was a birthday to remember! Love ya!

Big

Tonight, we celebrate.



And we're gonna celebrate BIG!

Same and Different

I was about 20 weeks pregnant. We'd had a "Triple Screen" done, simply because it was just one of several other routine screenings and tests my OB did with her patients. I don't even recall thinking anything of it when we had it done. (I guess I was more concerned with figuring out how to put an end to my 24-hour "morning" sickness.) Jeremy and I didn't talk about any "what if's"... we weren't nervous about what the results of the screening might be. We just had it done, and that was that.

I clearly remember sitting on our bed when the clinic called. The results of the screening had come back "inconclusive" for Down syndrome, and it was recommended that we come in for an ultrasound.

I hung up the phone. I didn't cry. I didn't feel a sense of loss. There wasn't grief or devastation. It was quite simple: I thought to myself, "Yes, our baby will have Down syndrome."

*****

I first "met" Kelle last year when I read her blog entry about the birth of her daughter, Nella. Kelle did not know during her pregnancy that Nella would have Down syndrome, and Kelle so eloquently described her feelings of sadness, grief, and devastation when learning of the diagnosis.

Nella's story spread quickly, and millions began to follow Kelle's blog. (You may remember me telling you about her blog here.) Through her beautiful photographs and inspiring writing, she has shared her first year with Nella, and we now see Kelle has reached the place that those of us with children with Down syndrome all reach in our own time.

The place where beauty is found in unexpected places and the true meaning of unconditional love is learned.

The place where differences are valued and even the seemingly "small" accomplishments are big, and are celebrated.

The place where the unlimited potential of our children is easily seen, and the dreams we have for them are immeasurable.

*****

To celebrate Nella's upcoming first birthday, Kelle wanted to give back to other kids and adults like Nella, so last week, she created Nella's ONEder Fund. She decided that all donations would go to the National Down Syndrome Society, an organization that works to "create a culture that fully accepts" individuals with Down syndrome.

Kelle set a very ambitious goal of $15,000. However, in less than 24 hours, the goal had already been met. As people all across the country world donated $5... $10... or $20, these supporters also blogged, Facebooked and Tweeted about it. The word of this incredible fund spread like wildfire, and as the goal was met, it was increased. Now, 5 days later, the goal is $75,000.

And you know what?

That goal has almost been met.

*****

Watch this... be inspired (and pay close attention at 3 minutes and 10 seconds.)





Click here to donate.

*****

Kelle and I may have come into the "world of Down syndrome" differently... we may be at different points in our journey... but our dreams for our girls are the same.

We want them to live in a world where differences are celebrated.

Not just tolerated or accepted.... but celebrated.



(I mean, really... how can you not celebrate this face?)



Rylee Jayne - 10 months old



Results

The results of this snow day project finally dried, and turned out really cute! The kids loved the "magic" of cutting on the line I drew, opening up the folded paper only to find it was a HEART! (Don't tell them everyone on earth knows that's how you make a paper heart... they think I'm a genius.)

Rylee isn't a big "arts and crafts" girl. Usually it takes me longer to get everything ready to make the project than it does the time Rylee spends on doing the project. But I try not to let that stop me from making things with her. (It helps that Carter is old enough to do projects with us -- I think he extends her time by a few minutes by working along side her!) She is a simple little girl. A few heart stamps here. Some paint strokes there. A little glue and a couple shakes of the glitter and she's content.

When I get a little discouraged that she doesn't want to do more -- "Don't you want some more hearts here? Look at all of this white space, hon. You can use these cool stamps here... or maybe some lace?" -- I remind myself that maybe she's the one teaching me. Less is more. Simple is good.

And the hearts...what or who Rylee loves: Mom, Dad, "Jord" (Jordyn), Carter, Zoe and Tessa.

And no, don't rack your brain, trying to remember if we have a cat named "Tessa", or if somehow 2010 really DID fly by and you hadn't realized we had a baby. No baby here.

Tessa is her friend... her BEST friend, to be more accurate. And the best friend anyone could ever have. She's an amazing little girl who Rylee met last year in Kindergarten, and now loves her just like family. (In fact, Tessa was the first name she wrote on a heart... even before Mom and Dad!)





Carter could have cut hearts out for days... he was the one most impressed by "Mom's magical hearts!" And if you want to win that little boy's heart, just give him glitter! He was a- shakin' and a- shakin' -- though you couldn't tell that from his project because quite often he was so excited to shake the glitter that he forgot the glue first!

And the hearts...what or who Carter loves:
("Mom, you jus wite the woods (just write the words) 'cause I'm tired from shakin' the gitter.")

Toys, Mom, Dad, Rylee, Jordyn, Zoe, friends, house, and "ME!"




*****

More results: An Update on Rylee's Neck/Spine

(You can read the beginning of this "story" here and here.)

Many of you have asked where we're at with this, and we surely appreciate everyone's thoughts! I'm sorry I haven't updated sooner... it's just that I don't really have much more to report!

Shortly before Christmas, the surgeon in Philadelphia called. He'd had a chance to look over Rylee's x-rays, MRI scans, and medical reports done here. He said that Rylee does have instability at extreme flexion and extension because he definitely sees it on the x-rays; however he believes that it didn't show up on the MRI because her neck wasn't flexed/extended as much during the MRI as it was on the x-ray. So basically, we aren't comparing apples to apples when comparing x-rays to MRI scans.

His suggestion was to continue the limitations we have on Rylee's activities (no gymnastics, trampolines, or any activities that of course put pressure on her neck.) He recommended that we have new x-rays and MRI scans done in the next several months.

We have some follow-up questions for the surgeon, and are waiting to connect with him to ask those. Based on his answers, we will then need to decide if we will have the x-rays and MRI scans done here, or if we need to fly to Philly to have him do them.

So, thanks for your continued thoughts! We'll keep you posted as we know more!

Snow Days

Snow Days mean colorful ink pads and heart stamps...



scraps of lace and lots of glitter.



Snow days mean glue bottles and paper hearts...



heart-shaped sponges and paint-covered hands.



Snow days mean red Bingo Dabbers,



more glitter,



and more paint.



Snow days mean fun for the kids, and even a little fun for Mom.



The result? You'll have to wait. The projects won't be dry for six two days.


(Just noticed my copyright still says 2010. Too tired from all the glitter fun today to go back to change them! Will get it changed for next time!)

Spelling in the Kitchen

Did you know the dishwasher can be a very educational tool?





"is" and "big" were two of her spelling words last week... anyone figure out what the other 3 words were?

A New Beginning

A new year.

A new beginning.

The time when you can start all over.

You start making your bed each day.

You begin writing more neatly in your brand new day planner.

You make each meal with thought, and if you had a chart of the 5 food groups on your wall, you could proudly check off each group every single meal.

You vow to show more patience, and when it takes your 3-year-old 15 minutes to put on his (velcro) shoes, you smile and praise him.

You commit to yourself that every day your son has preschool, you will head to the gym and spend the time getting skinny healthy.

But by February, you'll have your decorative bed pillows back in their permanent home (in the closet) and you'll already have 5 things messily scribbled out in your day planner.

By March, you'll have served a handful of meals that consisted of frozen pizzas or frozen chicken nuggets... and nothing else.

In April, you'll find yourself sighing and muttering "Please hurry up!" to your kids when they take way more time than necessary to put on their seat belts.

And in May February, you'll have already talked yourself out of going to the gym "just this one time" because you really need to return some things to Target and need to get the oil changed in your car, and it's just easier to do some things without kids with you.

Intentions were there... and they were good.

Life just got in the way!