Monday, October 20, 2014

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.

video

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

Thursday, October 16, 2014

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.

Tuesday, October 14, 2014

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.

Monday, October 13, 2014

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!

Sunday, October 12, 2014

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 :)




Saturday, October 11, 2014

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 :)

Thursday, October 9, 2014

Always Happy?

So there is a statement that is often made about children with Down syndrome that is often corrected.  That is "they are always so happy".  And the retort is that they have a full range of emotions just like everybody else.  And you know what?  Both are true.  It is true that we should not belittle the humaness of any person by saying they are always anything...especially something like happy that could be perceived as indicating that they aren't capable of any other emotion.
 However...it is generally true!  People with Down syndrome seem to often have, not so much an always happy disposition, but rather they are blessed with a greater capacity for happiness than the rest of us.
I'm not sure what it is about that extra chromosome, but there is just pure joy in every experience, every relationship, every...well everything.  Perhaps it is one of those more work=more reward things.  Perhaps there is less of a filter with the world.  Perhaps it is just a blessing bestowed upon the chromosomaly gifted.  Don't get me wrong...Reagan can throw a temper tantrum with the best of them (remind me to get a video of the slow evolution of a happy face turning pouty!),  but in general this girl has a smile more contagious than yawns. ;)