School Days, Happy Times

Last day of my favorite month.  That's ok though because now we move into the long wonderful stretch of holidays.  Here's to hoping I stay motivated to share some of that here from time to time.  Today Grammy came to visit Reagan in school for her Halloween party.

Counting Five Pumpkins and coloring

 

Showing off some mad cutting skills

It was lots of cuteness and fun, some of which I was able to capture on film.

Fun games that target those pesky gross motor skills.

 Everywhere Reagan went today from classrooms at school to trick or treating she was, of course, charming and popular.

Walking on "yeyow peet"

Trick or Treat at the 5th Grade classroom

Miss Denise and Reagan were twins, but lets face it, we know who wins the cute contest here

Playground time

We wrapped up the day...and the month with a little neighborhood fun...and watching The Great Pumpkin sitting on straw bales.

Compassion

I'm going to shift focus kinda sorta for a minute here.  Today Cadence was honored at her school as student of the month for the first grade class.  I have to say yet again...I love this school!  When the teachers select their student of the month it is not based on scholastic achievement.  Rather, they choose based on demonstrated character...Christlike Behavior...is what is says on the certificate.  And the teacher goes up and says why they choose the student they choose.  So for first grade Mrs. Ferre stood up and talked about a student who was new to school this year, but who she got to know last year from her sister.

A student who when she considered the Fruits of the Spirit, one in particular came to mind.  Compassion.  She said that this young lady exemplified compassion in and out of the classroom.  With her classmates and her siblings.  She always shows her depth of care for their feelings and problems.  And you know what....her teacher nailed it!  If I had to pick one word to define Cadence it would be compassionate...or empathetic which is really the same thing.  She has a depth of care for those around you that you seldom see in a not yet six year old.  And here's where I'll get a little back on topic.  This is Cadence's nature.  But it is helped along by Reagan.  And encouraged in others by Reagan.  This is one of the gifts of being around those with special needs.  They make us better people.  And they don't even try!  But back to Cadence.

 I am so happy that her most basic nature and her greatest gift was publicly recognized today, because too often compassionate people get taken advantage of rather than being recognized.  And it was so nice for her to hear from someone other than Mommy that she is a true Child of God following his example.

The Power of The People

There is a big problem that exists for families with special needs children and the church.  A real, heartbreaking problem.  The one place that should be a safe haven, a place of rest, a soft place to land....that place has become one more difficult place to be.  And often one too many.  This is so very wrong.  How is it that the church has failed here?  I really don't understand it myself.  I know it is true.  I understand what I have heard from so many families.  There is no place for them, it is too hard to make it work.  Church becomes just one more challenge in a week already full of challenges.  Instead of being a place of refreshment and rest it is yet one more place to try and put on a good face.  To be rejected because your child doesn't fit in with the rest.  I will freely admit that this has not been our experience.  We have been blessed to be a part of two (although I admit that the first probably no longer fits this mold) churches that have been a wonderful model of Ecclessia.  When it comes to church and special needs sometimes a church is too big and our kids can fall through the cracks of programs that won't mold to them.  And sometimes a church is too small and doesn't have the resources for a "special needs program".  And I sit here as a former member of the large and a current member of the small (and I mean small!)  and I say...this is not ok and no excuse.  If the church is letting down special needs families than it is not the church!  Let me show you!

This is just a fraction of the hugs Reagan gets on any given Sunday.

Ecclessia means The Church and is translated as called out ones.  This is what we should be to each other.  And this has been our experience.  Reagan doesn't "fit in" to a proper place at our church.  She refuses straight up to go into the pre-school class except when her friend (also chromosomally enhanced) is in there and even then she would rather both of them crash the big kids party.

Even though we have age groups for Sunday school...the kids mix as suits them best

  Despite that fact that probably 20% of the kids (all dozen or so of them lol) in our church have special needs, there is no special needs program in place for them.  Reagan makes her own place in our church.

Baptisims are family affairs

And at the most fundamental level that is how it should always be.  People caring for people.  The church being there as a family for each other.  Others have written about this problem and probably have "better" solutions than I can present, but I know this:  if we each make sure that we meet a need when we see it, then families with special needs will not feel left behind in our churches.  We don't need programs (though some churches have them and they can be amazing).  We need people who care.  I love the fact that from the time I arrive at church on a Sunday morning (which can be as early as 7:00 if I'm doing music) until the time I actually put my kids in the car to leave (sometimes noon if I play both services)  I don't actually have to worry about where Reagan is.  Because there are so many people who are looking out for her.  This is how it should be.  If I am playing and Grammy and Papa are working the media booth who is going to hold Reagan during singing?

She loves singing with the choir...sometimes she even knows the words

 Oh wait...she'll just join the choir.  She doesn't want to go to Sunday school one morning....its a sure bet I won't be the one holding her for the service because there are several other pairs of arms vying for that privilege.  And while I know Reagan is fun,  I also know that the attitude of caring would extend to others.  If there was a child who needed a quite place away from other kids while their parents worshiped there would be willing people to play with them in the office.  Because as awesome as programs are...they still don't meet people where they are.  Only people can truly do that.  And I am proud to say our Ecclisia does that.  And I want to point it out very specifically here too, because we must never lose that.  And for everyone else out there...be sure that you are truly seeing people and hearing their needs...watch out for what they may be too afraid to say.  Remember when we ask "how are you"...we often don't really want to hear the answer, and families dealing with special needs know that and won't tell you.  Don't look past.  Ask and really,really mean it..."what can I do to give you a day of rest".  And then we will be serving our family.  Because this is what it looks like when we don't put people in a box.  We don't say "I'm sorry she's too little (or delayed or just a kid or....) to participate in this.

Yes a 4 year old with limited speech is included...and participates...in the prayer circle...it is a blessing to all

Nope.  We are a family and families do stuff together no matter how old or young or how many chromosomes we have.  This is Ecclisia.  I know I probably rambled here, but there really is no way to sum this up.  Except I guess...be called out for each other.  And try to make this...Reagan's place...a reality for everyone in your life.

A Thousand Words

We had a more laid back day today.  Not so much work and a lot more play.  We were invited to a birthday party for one of Clarisse's classmates at a fun bounce house filled venue.  Reagan thoroughly enjoyed herself and showed off a ton of skills.  Instead of telling you, I'll just show the pictures shall I? :)

 Big girl even climbed up to a tall slide and slid down all by herself!

Face painting is always a favorite of my girls.  She requested a crown...no prompting.

Look out,  Speedy Reagan coming through!

Cake!  I love Cake!

And finally one video because I was blown away when I handed her the bat to try and hit the ball and she did this...and this was her worst hit!  Girl has some serious hand eye coordination!

Let it Go

As we all know, Reagan is Frozen obsessed.  And really cute.  Wanna see?

And when mommy won't turn it on for her...well that doesn't slow her down...she has the music and she knows how to play it...kinda. lol

P.S. Aunt Jodi...if you are reading this...you made an appearance in her bedtime prayers tonight...she thanked God for Aunt Jodi XOXO.

Awareness

The concept of awareness and raising awareness for Down syndrome has naturally been on my mind the last few weeks.  I almost didn't raise to the blogging challenge this year as our experiences have been so fantastic that I almost feel that we don't need to raise awareness about Down syndrome.  And then at the beginning of the month a few people posted about not calling it Down syndrome awareness month, but rather Down syndrome acceptance month.  The idea being that everybody if perfectly aware of Reagan (or ...insert peer here..), but what we really need to work on is acceptance of Reagan (or peer) as she is.  There is validity to this statement and of course as her mother I hope that she is accepted wherever she goes...and right now she pretty much is (of course...she's adorable and charming and, well you all asked me to do this again this year so you know).  As I pondered this though I realized that awareness doesn't merely mean that you are aware of Reagan, or that she has Down syndrome, but rather of what that really means.  Because truly and very tragically there is still a lot of misunderstanding and lack of knowledge of the basics of Down syndrome.  And without understanding (whether you like/agree with it or not) there is not likely to be the cherished acceptance.  And that is particularly true among our children.  Because they can be caught before negative ideas catch hold and pointed in the right direction with facts and compassion.  So it was with much excitement that I spoke (for the first time ever!)  to the big girls school about Down syndrome today.  It thrills me to no end to think of the 103 (yes I counted) children who have already experienced Reagan on the edges of their lives learn that she has Down syndrome and what that means and to actually clamor for a Down syndrome awareness ribbon to take home because, as they shouted to me in the presentation, Reagan is a person just like them.

 Created by God just as she is.  And to be loved an cherished no matter her differences because she is Created in His image just like them.  I have to brag on this school and these kids for a moment here.  They blew me away with their participation in the explanation (fyi pairs of socks are a great illustration for chromosomes)  and their insistence that value isn't based on chromosomes or differences.  Cookies are a great illustration of differences being a good thing, but the fact that they wanted the ribbons more than the cookies warmed my heart to no end.

 That is 103 future adults who will not be frightened by the idea of a child with Down syndrome.  103 people who won't feel awkward when they meet someone with Down syndrome...or for that matter for some other difference.  Because these kids really got it that we are all creations who are more alike than different and that our differences make us who we are.  I loved that the principle used Down syndrome as a jumping off place to teach these kiddos that when they meet someone who looks or acts differently than them to remember that they are also created by God and to be treated as such.

 So there you go.  Awareness really is important...so go...spread it.  And if you need to know more stuff....well ask! :)  And (I know I'm probably talking to the wrong crowd here) if someone tries to tell you about something important to them....please listen...if it is important to them, then it should be important to you.

Disney Days

We love to spend an afternoon after school strolling the enchanting byways of the Happiest Place on Earth.  And since Reagan doesn't have the stamina to do much walking (still working on getting some physical therapy for that)  she rides in the stroller.  Which means when she kicks off one of her boots and I don't notice that she is trying to tell me, I get to re-stroll those byways in search of it.

She doesn't mind though...she'll ride on the carousel with Daddy while she waits.  She will not, however, ride on the animals...they go up and down and up and down is scary!

Toy Story Midway Mania is a favorite of Reagan's.   She is pretty good at pulling that string to shoot balloons and plates.  It is always a highlight of her day.

There are some rides that she is a little (ok a lot) too small to ride...you know all the ones that require you to be over three feet tall.  But that's ok...we know how to pass the time waiting for Daddy and sisters to ride them.  Spinning Minnie is fun, even if Mommy won't buy it.  (Ok lets face it, I would have bought it if Daddy wasn't carrying all the money...could you resist that smile?)

And as evening falls and it feels like it might actually be fall,  Reagan has to show what a big girl she is by zipping up her sweater all by herself.  "Did it Mommy, did it".

And Now I Lay Me...

We sat on the sofa and listened to Reagan tell us a riveting story for 15 minutes this evening.  But our phones were dead so we didn't capture it, and of course when we tried to get her to tell us a story later she wouldn't do it.   But I did get this and it is too sweet not to share.  This is not an isolated incident...she does this spontaneously every night and also at mealtimes.  See if you can actually catch what she's saying in her bedtime prayer...I'll provide translation below.

"Jesus....And Elsa, and Ponies, and To-day, and Home. Thank You, 'Men"

A Day Off with Daddy

Hi this is Reagan.  My mommy is pretty busy lately so I'm taking over the blog for today.  I didn't have school today and my Daddy didn't have work.  I got to do everything Daddy did today.  We did lots of fun things and I looked cute all day.  I know because everywhere we went people told Mommy and Daddy how cute I was.   Especially my boots.  I love my boots.

 We took my big sisters to school and then we ate pancakes together.  Pancakes are my favorite thing to eat for breakfast.

 When we came home Mommy started baking some cakes so I thought maybe I should make some for Daddy too.  I love to cook.

 After lunch Daddy was tired.  I wasn't.  I tried to put my bracelet on Daddy, but he said it was cuter on me.

 When it was time to pick my sisters up from school I borrowed my sister's sunglasses because it was bright outside...and I look super cute sporting upside down sunglasses in my carseat!

 Once my sisters were done with their homework we all went for a walk.  Well everybody else walked and relaxed in my stroller and ate goldfish.

Yep, it was a pretty good day.  I'm ready to go back to school now.  See ya all later.

This and That

Be still my heart I love this kid!  This is the same little girl who I have been writing about every October and that I mentioned last week.  Nobody tells her to do this stuff.  God Bless the Little Children!  11 years old and she is going around with one hand painted pink and the other blue and yellow and telling everybody why.

In other news,  I have been tearing my hair out trying to line up insurance and specialists....why does it have to be this complicated?  And the position of Reagan's secretary is open...it pays well...at least if you can succeed in making these things happen without screaming.  Grant me patience with yet another round of phone calls tomorrow and may everybody's computer systems be running properly.  And Heaven help the next person who says they will call me back to schedule an appointment but never does!  Ok that is out of my system.  Most of Reagan's labs have come back and they are all looking good so far.  Yay!  Also...for the first time since she moved into her big girl bed, Reagan went to sleep in her bed.

  Can I get three cheers?!  Tomorrow is a no school day for Reagan and over into a day off for Daddy so we get lots of play time.  We shall take many cute pictures.  You are welcome.

Brave Girl

We all know that bravery is not defined by the lack of fear, but rather by moving forward despite the fear.  Or in the case of a sweet four year old girl, by sitting perfectly still and allowing techs to stick a needle in her arm yet again.  This girl does not let doctor stuff bother her.  She is a perfect patient.  Calm, compliant,  she is able to follow instructions that make her doctors jobs easier.  As I mentioned before, when we went for the first blood draw last Monday she watched with curiosity and no fuss.  We went back on Friday for part two.  It did not go so well.  Despite her easy nature, it is very difficult to find a vein with her. I very much appreciate the fact that the techs listen when I tell them she is hard, but even the best intentions don't always translate to success and such was the case on Friday.  The first attempt she didn't flinch, even when they slid the needle in an out and around to try and find that tiny thread of a vein.  The second attempt was okay with a little whimper with the probing needle.  The third attempt she held it together until they started moving that needle again and then we had some whimpers and almost held back tears.  Three pokes and we walked away with no blood and having to come back again.

 So when we went back today it is no surprise that when the tech put on her gloves Reagan looked at me with a face so pathetic I wanted to pick her up and run out of there.  But she did not cry.  She did not fight.  She did not flinch.  In went the needle and then it missed the vein again.  The poor tech could feel it and every time she tried to slide the needle back in it would move.  And Reagan ducked her head and whimpered.  Then we prepped for take two.  The tech put the tourniquet back on and again Reagan gave us a looks that clearly said she did not want to be there.  The tech told her she was only putting it on for a minute and wasn't going to poke her and Reagan told her "okay" with a catch in her voice.  Then the second tech came over to confirm the vein (which in classic Reagan form didn't run straight, but rather diagonally across her arm).  When they prepped the second needle we finally got tears, but she still put her arm out and repeated "squeeze it" for making a fist.  She didn't move except to tuck her head and hide her tears.  And when they got the vein and cheers erupted she cheered along with them and immediately stopped crying...she knew the worst was over.  I am blown away by her strength and bravery in the face of fearing the pain.  But even more than that I am humbled because I know that the only reason she sat so still and didn't fight is that she trusted me.  She couldn't know that the blood draw was important, couldn't understand the concept that it is for her own good.  She just had to trust that if Mommy told her to do it then she would do it.  May I always be so worthy of her trust!  Brave, strong girl!  Mama is so proud of you!

Beautiful Real Life

I don't really have anything to say today.  It was one of those days that when you get that diagnosis of Down syndrome and your world tilts on its axis because you weren't expecting it and don't know what it means...you wonder if these kind of days are gone forever.  Then Reality takes over.  Real life happens.  And you realize that a diagnosis doesn't mean the end of everything....rather just a shift.  Some things change forever.  Some things change for a little while.  Some things are harder.  Some things are more beautiful.  And those things you wondered if you would ever do again?  Yeah, you find a way.

We drove up to see the aspens in all their fall glory today.  We haven't been in five years...not since before Reagan was even conceived.  (And interestingly enough the delay had more to do with tackling motion sickness in Cadence....thank you Miss Wanda!...than Down syndrome)

We found the same baby tree Cadence played with keeping
pace in the growing up department

 We all love to hike and be outdoors.  And of course fall is my favorite season.  

Every year in the second week of October the Aspen leaves turn and when the wind blows through them you are showered with a golden rain of leaves.

 The girls loved it.  Nature is the best playground ever.  Reagan's low muscle tone and yet to be corrected foot problems make walking in rough terrain for any length of time difficult for her, but with the help of our trusty ($12 swapmeet) jogging stroller we manage to get her anyplace the big girls can walk.  Then she gets out and explores whenever we stop.  So yeah,  disability may slow us down, but it won't ever get us down :)

Every Day I'm Growing Up

Every day I'm growing up, a little bit, a little bit more!

 
 I have been looking over a lot of old pictures lately as I have been writing posts over the last couple of weeks.  Also I got Reagan's school pictures back this week.

 As I look back over old pictures and old posts I notice how much she has grown and changed while still staying the same charming Reagan she has always been.

  So I decided that a timeline post would be super fun.

I know most of you have been with us for this whole journey, but I figure you would like to see what caught my attention even if you have seen all these pictures over the years.

Of course as I went through the pictures I realized there were waaaaayy too many...so maybe we'll have to do it again before the month is over.

P.S.  For everyone who will be seeing us tomorrow....make sure you get your picture taken with Reagan...we have a special post in the works :)