Wednesday, October 31, 2012

Why I'm Still Not Afraid (31 for 21 post 31)

I posted last year on Halloween about why I'm not afraid for Reagan's future because I know there will always be people in her life who care about her and look after her.  About her friend who set aside his own trick-or-treat basket to make sure she wasn't left out.  Well in the last year that friendship (amazing but yes, my 2 year old has a deep and lasting friendship with a 9 year old)  has become very important to both of them.  Olin loves to get Reagan from Sunday school every week and play with her after church.  He helps her keep up with the big kids and (most important to Reagan) shares his hats with her. ;)  He has moved from simply being her protector to being her teacher, so this year instead of simply making sure she was carried to the door for trick-or-treating, he showed her how to play each of the games at the carnival.  

Isn't she the cutest little pixie you've ever seen?

Olin carefully helped her sit on the table and showed her how to make the frog jump.

Gotta admit on this one Reagan was much more interested in the ducks than the candy...which is saying something once she figured out she was getting chocolate from all these people. :)

Olin demonstrating how to throw the ball and make it stick on the wall.....

...and Reagan is no dummy, she figured it was easier just to go up and stick it on.

Note...Reagan was scared of the bounce house when Grammy took her to it,  but if her buddy Olin was going to go with her she was all smiles!  Sorry Grammy.

And look who came with us this year...the cutest little bee.  Now with family and friends like that not only surrounding Reagan with love and care, but also teaching her and guiding her,  how can I be scared?

Whew....made through all 31 posts!  A little less Down syndrome this year and a little more normal life, but that is good.  Now we are off to a weekend of wedding stuff...back with cute pictures next week!

Tuesday, October 30, 2012

And Now A Brief Message From... Dad (Terms of Endearment)

I just thought I would get in on the fun before the end of the month and it looks like I just got in right under the wire.  I do want to say before I start that it's a bit distressing that Down Syndrome Awareness Month is the same as Breast Cancer Awareness Month but it's been fun educating people on the subject and it's an interesting discussion when someone asks you about Breast Cancer and you come back with "Did you know..."

Well, on the subject of my post:  "Terms of Endearment"... It's not just a really good very sad 80's flick starring Debra Winger.... It's every little wonderful memorable strange cute and not so cute names we call the important people in our lives.  For instance my oldest daughter we call Rissie (Reesie), her name is Clarisse, which I've always wanted to name my first daughter (I know what you're thinking but you'd be wrong... I got it from my favorite book of all time "Fahrenheit 451")  but I never wanted her to be nicknamed Clair so we call her Reese and it has stuck (Thank Goodness!).  Then our next daughter is Cadie short for Cadence but I'm a musician so sometimes I call her Cadential or Dential for short so you can see the madness involved in nicknames.  Well our last lady is Reagan and she's just a blessing to our little family as you can see from the above video as she helps Shauna sightread the main theme from what else "Terms of Endearment".  I'm good aren't I?  (You don't have to answer that)  Well we've been taking to calling her Rae Rae which is cute and she loves it.  But, when she was first born I had another nickname for her.  A name that was dismissed by a few people not the least of whom was none other than her Godparent himself.  I used to call her my Downsy or just Downsy... I know horror of horrors right?!  What was I doing?  What kind of weird grief stage was I in to be able to do such a cruel thing?  Who knows the answers to these things but before we get into a knock down drag out fight on what's appropriate and people first language I should say that I've never been a person who really cared about political correctness... When she was born there was a lot of angst, fear, and sleepless nights.  She was my little beautiful blessing with Down Syndrome.  I loved her and I wanted to protect her and take care of her like my other ladies and that's what came out!  Anyway, like I said earlier now she's our Rae Rae and she's growing so fast (since her heart repair she's just growing like a weed!) and she's playing the piano and running around and she's just like her sisters.  And I know that as she get older and more independent the old nicknames will fade away but I know she's always going to have that little extra and maybe when I think back on when she was just born I'll allow myself to remember her as my little Downsy.

Monday, October 29, 2012

From Little (31 for 21 post 29)

We all are guilty sometimes (some more often than others)  of thinking that we can't make a difference.  So I have a reminder here that keeping your hands and heart open is always enough.  Many times we do not get to see the results of our actions or generosity,  but sometimes we get to see an example of exactly why we should never, never assume that whatever (supposedly) small thing we have to offer won't make a difference.  We are called to use what we have been given...sometimes money,  sometimes time,  sometimes talent.  And when we give of ourselves it will be used.  I mentioned that I posted some custom crochet items in Tommy's auction.  I almost didn't do it.  I wanted to help, but I was overwhelmed with flower girl dresses and frustrated at the difficulty in finding pictures for the auction so I almost said forget it I'll just make a small donation instead.  I am so glad that I didn't give up on using my time and talents because it multiplied to so much more than a simple donation would have been!  One of the winning bidders asked for two items for double the donation...that resulted in over $100 for one of the auction!  Never underestimate how a gift can grow!  All you have is always enough whether it is $1 or $100, whether it is a donation to a garage sale or a bake sale or 5 minutes of your time or 5 hours of your time.  Open hands, open heart, open life, amazing results.

Sunday, October 28, 2012

Sunday School Therapy (31 for 21 post 28)

Reagan's therapist was curious as to what exactly Reagan does in the nursery at church, whether she plays with the other kids and what toys she likes, so today my mission was to find out.  It was not the best day for observing her interaction as the was only one other kiddo for only part of the time, but the nursery workers were in Reagan heaven (she is very popular at church).  When I picked her up I asked them what she did today and they both said "talked..a lot".  One of the ladies said she played on the slide a few times and they read a story, but mostly they were trying to get her to say new words.  They claimed the honor of teaching her "fish" and "bubbles" (which they also worked on blowing, another skill she's been working on in PT)  and that she was saying a lot of other words too.  So what if she can't get a speech evaluation or therapy until at least December?  Who needs that, we have Sunday School! :)

Saturday, October 27, 2012

The (unwanted) Skill (31 for 21 post 27)

 Reagan acquired another new skill today.  One I have been carefully avoiding encouraging in any way considering what a monkey she is.
Oh boy I am in trouble.  I knew it was only a matter of time.  She climbs on everything, and if there is something close so stand on she takes full advantage of that situation.  And she picks up her piano bench and carries it around and sits on it all over the the natural progression is??
Yep, she discovered that she can place that bench (or other things, didn't take long to work that out) strategically to allow for Reagan-don't-climb-on-that access to high places.

Friday, October 26, 2012

Proud (31 for 21 post 26)

I forgot one of the tidbits I intended to post about yesterday and it was the one that made me smile the biggest of all.  You know there are the big milestones  like crawling and walking that make us jump up and down and cheer.  And there are the little milestones like properly sorting shapes and putting puzzles together that make us smile and brag.  And then there are the ones that make us bust our buttons and scoop our sweet children up in great big hugs because they just made us so proud.  Reagan did that last night.  She was thirsty and so she signed drink and said "duce" as she usually does.  And she watched patiently as I filled her cup as she sometimes does.  And then when I handed it to her she did something that she has never done before and is an achievement for any two year old....she tucked that cup in the crook of one chubby little arm and with her other hand looked my right in the eyes and signed Thank You.  And then of course she giggled and looked at me like I was nuts for making such a big deal out of it.  But it is a big deal.  We always want our children to show gratitude and good manners, and that is not always easy with two year olds (or 4 year olds or 5 year olds either).  We teach by example, modeling gratitude and requiring it from the older girls.  This not something we have really asked of Reagan more than a scattered handful of times.  So aside from the crazy cuteness of it,  and aside from the fact that I'm proud she is developing manners,  mostly I am reminded not to expect less of her than her sisters.  She watches and observes, then she shows me...yeah Mom,  I got this too.

Thursday, October 25, 2012

Tidbits (31 for 21 post 25)

 Today we have a little of this and a little of that with photos brought to you by Auntie Megan.
 Sophia brought her mommy and Grandma over today.
 Sophia came to play with her new friends and watch Reagan's therapy.  Mommy and Grandma came to be crafty with me.
 We were making invitations for Sophia's homecoming shower.
 And now that Sophia is home  my attentions are turning to  another adoption.  My dear (virtual lol) friend Susanna brought Katie-bird home and she is doing very well, and now her family is working on bringing home a young man named Tommy.  So I have listed some items in his fundraising auction Tommy's Time.  And finally a Happy Birthday shout out to Reagan's friend Laura who is turning 3 today.
Photo: Laura giving Reagan some love <3
ok so this picture is courtesy of Ashley's brilliant photography :)
Such a big girl who is soon going to be a big sister too as her family just got their court date to go get their daughter Kamdyn.  So we are working hard to get them the rest of the way funded and bring this baby girl home for the new year!

Wednesday, October 24, 2012

Adventure (31 for 21 post 24)

 When you are 2 feet tall the whole world is an adventure.  Especially the part of the world where there are slides and swings.  Otherwise known as the park, aka one of Reagan's favorite places.  The girls love to picnic at the park on Mondays after their choir practice so we indulge as long as daylight and temperatures permit.  This Monday was pretty much it.  But I was so happy to see Reagan branching out.  Instead of sliding down the same (albeit high) slide 15 times and doing nothing else, this time she wanted to sample a little of everything.
  She climbed all the stairs and tried every slide.
 Then she wandered over to the caterpillar climber thing and attempted to climb it like the big girls.
 Then she very deliberately walked over to the swingset, pointed (she never, ever point) at it and said "wing".  She promptly had several volunteers to push her (children we don't know but who could not resist the charm that is Reagan).

Tuesday, October 23, 2012

Anecdote Tuesday (31 for 21 post 23)

I mentioned before that I should have anecdote Tuesday since I had such great comments from my students this month.  So here is one more.  I was working with one of my little girls who is about to turn 8.  She told me about her doctor's appointment today and how she got her blood drawn.  And I told her that Reagan has to get it done every six months.  She(31 for 21 thought that was pretty rough.  Then she showed me her Red Ribbon that she was wearing.  I told her she should be wearing blue and yellow for Down syndrome awareness.  Then I showed her the butterfly bow that we've been making for all Reagan's friends.  And she said "can I be Reagan's friend?" (she does know Reagan)  So I said of course and she promptly put the bow in her hair and told her to make sure she told everybody who asked that she was wearing it for her friend Reagan.  After her lesson she proudly showed her mom the bow and told her why she had it.  Mom's response?  It is so great that she is learning about supporting people at 8 years old, thank you for introducing her to this."  How much do you love that!?!  Along with that fact that mom told me she was thinking about Reagan today during her daughter's blood draw since she knew Reagan gets it done regularly  and she asked if her last check was all good.  Some days I just love people!

Monday, October 22, 2012

No Limits (31 for 21 post 22)

I never got a chance to post pictures of Reagan's birthday party.  It was a highly formal and elaborate event consisting of meeting with friends in Oak Glen for a picnic and raspberry picking.  
We know how much curiosity Reagan has, and how much she loves the outdoors, so it was the perfect choice.  It was a beautiful afternoon, the raspberries were delicious and the friendship even more so.

One of the things I love about these pictures is how they show the diversity of Reagan's (well all my kids' really) friendships.
 All ages. 

 All sizes.

  More chromosomes or less.  


These kids just love each other and look out for each other with no limits.

And that pretty much says it all.



Sunday, October 21, 2012

Grammy's Top 21 (31 for 21 post 21)

Piping in today to share her 21 favorite things about Reagan is Grammy...

1. Reagan's laugh is the BEST! almost matching is her smile (especially the little coy crooked one!)
2. She takes after me and LOVES chocolate, must be because she shares my name
3. she loves to clap and everything is worth clapping over!
4. I LOVE her small size because she's so easy to carry and cuddle and hug  :)
5. Her stubbornness! It means that she is growing up to be her own person.
6. That she plays "big girl games" like she really is a big girl!
7. I love that she loves the pool and that she can't wait to go swimming
8. She freely gives out those special kisses
9. Ponytails are just her style
10. Reagan loves the outdoors and exploring nature for as many hours as I do!

11. Reagan is enthusiastic about almost everything in life
12. I love her "whole" heart with my whole heart :)

13. I also adore her mommy ;)
14. I love having fun "beeping" her nose and her "beeping" mine for...well, ever!
15. I love that she needs watching ALL the time because it means she is interested in and exploring everything in her world
16. I love the way she signs her words (sometimes made up signs!)
17. I love that Reagan has taught me to take what God wants to give because I have no idea what blessings He has in mind before hand
18. I love that Reagan shows the value of ALL people, Reagan loves literally EVERYONE just as I ought to
19. I love that Reagan teaches me to be patient with myself since she has to work hard for her accomplishments

 20. Her cute little fist bump
21. This one is a threefer since it is  #21. I love her musicality... her singing (or is it signing?), her dancing (which she can't contain ever), and her piano playing (which she is so proud of!)

Saturday, October 20, 2012

Brought to you by (31 for 21 post 20)

This post is brought to you by the Letter R and the number 2.   As in my name is Reagan and I am 2.  And two year olds are big girls don't you know.  So we are all well aware by now of Reagan's love of music.

 And how much she loves to play her piano.

But this morning I heard gentle, one-note-at-a-time playing coming from my piano and assumed that one of the big girls was fooling around.  So I peeked my head in and what did I find?

Then she looked at me and smiled and her eyes said "What Mom,  you didn't think I was capable of climbing up here on my own and playing so pretty?  Don't you know I'm a big girl now?"
P.S. In case you didn't catch it, she is singing "Twinkle twinkle little star"  her new favorite.

Friday, October 19, 2012

Scenes from Therapy (31 for 21 post 19)

 Reagan has an early intervention teacher come twice a week for therapy.  We are very blessed that our "teacher"  is a Physical  Therapist so Reagan really gets PT even though it doesn't say so on the official records.  We love Elizabeth.  Therapy is not a hardship for us at all.  Reagan knows what days/times she comes and runs for the door when Elizabeth rings the bell because it's playtime!  And the big girls like to watch and help and copy through the week.  So here are some scenes from yesterday's therapy.

"hi...bye"  calling Grammy


sorting shapes

"tack, tack" stacking blocks

Thursday, October 18, 2012

Her Favorite Thing (31 for 21 post 18)

 For those of you who don't know Reagan as well as me let me inform you of her favorite thing.  Chocolate.  This kid will do anything for chocolate.  Seriously, we taught her how to crawl with bribery by m&m's.  And pulling to stand was accomplished via out of reach brownies.  So today Reagan wants you to know

that it is 

National Chocolate Cupcake Day

Chocolate and Cupcakes...the perfect combination.

But she is only two after all, so she couldn't be enticed to share.

Sorry,  but at least I can share her cute pictures.
Happy Chocolate Cupcake Day!

Wednesday, October 17, 2012

I Got Nothing...(31 for 21 post 17)

And this is how normal life has I got nothing.  Today we had no appointments, no therapy, no nothing (poor grammar I know).  We just kind of fiddled around all day working on the girls' flower girls dresses for Aunt Jodi's wedding in a couple of weeks.  And playing in the treehouse tent.  And watching Beauty and the Beast.  And not trying to do anything important or think big thoughts.  The day just slipped by in a pleasant way.  So I got nothing.  Ok, I've got one picture I snapped.
What happened to my baby?  She's been replace by this big girl now!

Tuesday, October 16, 2012

Capacity for Joy (31 for 21 Post 16)


 There is an idea that floats around that people with Down syndrome are always happy.  And there is a rebuttal that this is not true, they have a range of emotions like everyone else.  This is pointed out with adorable photos of pouty faces and funny tantrums (I don't have any of Reagan because I'm usually too busy laughing to think of getting my camera).  The former is an oversimplification and the latter misses the reasoning behind the perception of perpetual happiness.
 I honestly don't have a problem with people saying "they are happy all the time".  As a matter of fact I often find myself smiling at Reagan and telling her that she is always sooo happy.  And believe me, Reagan can whine with the best of them when her sisters are leaving her out, and she has to most adorable chest heaving, lip protruding pout you have ever seen.  But generally speaking she is a very happy person.
  See, I think the truth of the matter is that people with Down syndrome have a greater capacity to find joy than the rest of us.  I would (ok I do) envy that, but then I remember that Reagan's great capacity for joy actually rubs off on me...when she is so thrilled about life while I'm watching I see things through her eyes and find more joy in the simple things myself.
There is no denying that Reagan giggles at the slightest provocation.  That she cheers for everybody.  That she smiles and dances anytime she hears music.
  So is it any wonder that it is perceived as happiness all the time?  Reagan finds joy in everything.  I think that the extra chromosome tends to cancel out the filter of negativity that so many of us walk around with...therefore..."happy all the time".  So is Reagan truly happy all the time?
 No, of course not, she is a person.  However, Reagan lives in joy.  And the really great thing is that joy is contagious.  It is much harder to be in a bad mood with my sunshine around. :)