Wednesday, October 1, 2014

We're Ba-ack (31 for 21 Post 1)

Hellloo October.  Apparently all you Reagan fans have been waiting for this.  I LOVE you guys!  I wasn't really sure if I was going to bother with posting this year since I don't know if I have anything impactful (is that a word?) to say, or maybe I am just too scattered to sit down and put my thoughts on paper screen in a way that actually means anything to anyone...yeah that is it.  But when Reagan's birthday rolled around and so many facebook friends mentioned they were excited for their chance to see Reagan for a whole month, how could I be responsible for depriving the world of some seriously fantastic Reaganess (yes that IS a word).  And wow have we moved into a whole new world of Reagan in the last year.  She has changed from toddler to...well...kinda like every other four year old you know right?
 Show of hands....whose kid has done this?  So this time around she has LOTS of personality to show off...she talks, she sings,  she loves Frozen (of course she does, she is a four year old girl right).  She is all about showing the world how she is both Alike and Different.

Thursday, October 31, 2013

"I Tree"

She's three and she knows it and she is a big kid now and won't let anyone forget it.  Trick or Treating and the Church Carnival tonight was adorably cute and astonishing.  Reagan was really into it.  She played all of the games with enthusiasm.  She got her face painted just like her sisters and held so still for it.
 She mastered "Tick O Teet" and charmed the socks off of every single person giving her candy with her "Tankoo" complete with sign.  She insisted on carrying her own bucket and being a part of the group.  But beyond the cuteness that is standard and the participation which we have come to expect from her, she blew me away with her attention to instructions and conversations.
 At one game she was told she could pick two candies.  I didn't even think Reagan could count to two much less follow a complicated instruction like that, but she picked one candy, put it in her other hand, picked out another and put both in her bucket and walked away without me saying a word!  I was floored!  Then later a person at one house asked if she was younger than two.  I responded that she was we walked away she repeated "I tree, I tree" and held up three fingers!  I didn't even think she was listening, much less comprehending.  Obviously Mama needs to raise her expectations.  I have a feeling this is going to be a constant refrain from now on. :)
 And now I say farewell to October and daily posts, but I promise to all of you who have been so happy to hear Reagan updates that I won't go a whole year before sharing again.  Next week we will learn about her hearing and I will update on that.

Wednesday, October 30, 2013

What it Means

Reagan has Down syndrome.  We all know that by now right? ;)  But what does that really mean?  Technically speaking it means that she has Trisomy 21...that is three copies of her 21st chromosome.  Instead of the 46 chromosomes (23 pairs) she has 47...shoulda known that a kid born to musical parents might have a triplet thrown in just to keep it interesting lol.  Medically speaking that extra copy can contribute to a long list of possible side effects.  Some of these Reagan has and some not.  Her vision seems un-affected.  Her hearing...not so good.  Her thyroid is fine, but her heart was broken till her amazing surgeon fixed it.
  At three years old she is pretty much past the big scary possibility of leukemia.  She does have some delays in development, but she is working hard.  These are facts.  But they do not capture the heart of what it really means to her and to us that she has Down syndrome.  It means that she has an extra big heart that only sees the best in people.  It means that she has a little extra drive to accomplish those things that are hard for her where others might give up.  It means that she has something magnetic in her personality that shines through her smile and draws everyone...and I mean everyone she meets, and brightens their day.
 I don't know how many times I've had someone (who can't tell she has Down syndrome) tell me that they don't know what it is about her but she is just the sweetest thing and she makes them smile.  Talk about a purpose in life....who cares if you can't do Calculus if you can just brighten the world by being alive!  It means that she has opened our eyes to what it means to look beyond our predictable plans for our lives and see the gift of the unexpected.  I can't even imagine what life would be like if I had the baby I expected instead of seems like it would be boring and flat and stale.  And I think about the people who have so enriched our lives that we would never have met (both in real life and virtually).
 Some of Reagan's chromosomally enhanced influence is tangible and easy enough to list.  But some of it is just a feeling and knowing how much better off we are with her that I can't quite ever put my finger on or express in words, but I know that I am so grateful to be one of the blessed ones to have a child with Down syndrome in my life.  We are coming to a close on October now and the task of raising awareness daily is ending, but those of us whose lives have been touched by Reagan and her "triplet" will always be if you have a second, tell me what it means to you...

Tuesday, October 29, 2013

Chasing Rainbows

A couple of things have been rolling around in my head and heart the last couple of days and I have been contemplating how they come together.  I don't profess to be the best or most inspiring writer, but this is what has come to me.  Someone on facebook brought up the question of fear vs. faith, especially as it relates to having a child with (the risk of) serious medical conditions.  How do you balance vigilance and fear and faith that God is in control.  As mothers we are the ones who know our children the best and can see if things seem off and we should not discount this.  God created this in us when He designed us to be mothers.  And when your child has something like Down syndrome (or in the case of my dear friend, severe immune suppression and 5 transplanted organs) you know some of the increased risks that come along with it.  And they are scary and they are real.  I've been there.  Reagan had open heart surgery at six months old and it just about killed me.  And every time she gets blood work done I wonder will this be the time, the time when the numbers are wonky and we have to face more fears.  Some people will tell you that fear is not of God, that you need to give it up.  Personally I think that is hurtful hogwash.  Fear is real and fear is valid.  It is what you do with the fear that matters.  I think a good way to think of it is do you live in fear or do you live with fear?  If you live in fear then the fear is ruling your life, your choices, your perspective, and there is no room for God's peace or His plan.  If you live with fear then you are human.  And God can use the fear for His help you spot a problem, to grow you, to teach you compassion.  I come back to what my mother reminded me the night that Reagan was born.  We were faced with overwhelming, debilitating fear, not because we thought Reagan had Down syndrome but because of what it meant to her health right then.  We were frozen in the inability to move in what we thought was right because of the fear of what might happen if we were wrong.  And my mother gave me this verse.  "For God has not given us the spirit of fear, but of power and love and a sound mind" (2 Tim 1:7)  Not that we will not fear....but we do not have a spirit of fear.  We have power...wisdom from God, strength to do what needs to be done and face what challenges we are given.  We have love...from God, for our children.  We have a sound mind...that God has given us to use in judging our circumstances.  Where is your fear?  Is is pulling at your ankles and dragging you down into the quicksand of horrible possibilities, keeping you from moving forward?  Or is it peeping over your shoulder when you come up against the hard realities of life?
The girls and I were driving to choir practice on a stormy afternoon the other day and we chased a rainbow (a double one) entire way.  It was stunning.  And it sparked lots of commentary from the back seat.  One comment being a six year old's proud explanation that the rainbow was God's promise never to flood the Earth again.  That stuck in my head as I was pondering the spirit of fear.  And I realized that yes, the Bible tells us that God set the rainbow as a promise.....we've all heard the story a hundred times....but it suddenly occurred to me that the rainbow isn't only a promise not to flood the Earth or bring destruction to all is really a promise of His goodness, grace and mercy...of His enduring Love and presence.  It is a visible reminder of Jesus' words to us "I am with you, always" (Matt 28:20).  And that is what I cling to when fear tries to grab my ankles and suck me down....I will chase that rainbow.

One last thing.  As I was contemplating this post I read this story about an amazing mother and woman of faith who lives with very real fear on a daily basis and I think she has mastered chasing the rainbow in a way that will bring you to tears and inspire you.  Go read it and be blessed.

Monday, October 28, 2013

School Girl

Reagan started pre-school today.  She loved it.  Mommy is not sure how often she should go, but we know this much for sure so far...she responds well to the program!
 So far I am reasonably impressed with the classroom.  The ratio of kids to aids is 1 1/2 to 1 so there is lots of one on one learning and it is all very focused on the skills Reagan should be working on.  I peeked through the window for a while and liked what I saw.  While I would still ideally prefer what we had before with therapy at home, I have to admit that I like her teacher who told me today that she did the in-home teaching/therapy for many wonder she knows how to structure her classroom well.  So Reagan went, she charmed the socks off of her teachers, she didn't want to leave and I didn't hate it.  This is a good start. :)  She gets speech two times a week and there is adaptive PE (basically physical therapy) two times as well.  So we will see how much she benefits and in what way and feel our way through just how much she will go to school.

Sunday, October 27, 2013

What She Learns

I promised to do a post explaining the details of Reagan's Equine Assisted Learning, so here goes.  Reagan rides a pony named Sally whom she has come to love dearly and calls by name....cognitive, social and speech, check. ;)  And that is pretty much how riding goes for her.  Various parts of her ride work her in every area of therapy from gross motor through speech.  Reagan rides bareback (with a bareback pad)  in order to feel the movement of the horse more and encourage her balance.  This has worked wonders for her muscle tone!  Before she started riding when you picked her up she was a dead weight....she didn't hold herself up at all.  I noticed the very first time she rode the improvement when I picked her up after.
  Riding bareback has also improved her posture.  When she first started she was nervous and hunched into the horse, now she sits tall with a straight back and corrects her balance.  She even grabs the "reins"  to "steer" as her confidence and balance have improved.  She runs through a series of tasks and tells Sally to "walk on" (or as Reagan says "ahk ahn") after each stop.
  She weaves through poles on which she drops colored rings.  She has to say the color (cognitive, speech) and reach different heights and distances (gross/fine motor).
 She drops a baseball into a traffic cone (motor planning, balance).  She shoots a (small, she's tiny and the big one hits her helmet lol) ball into a basketball hoop (gross motor, speech.."one more time", "ball").  And she runs through a series of exercises extending her arms for balance.
  She is learning to care for her pony, she now helps brush her before saddling up.  She also know where her helmet is kept and gets it out and puts it away (life skills).  There is nothing that has not been improved by her riding and specifically her speech has improved (started really) dramatically from the day she started.  Now this is just what Reagan does.  The big kids like Austen and Dakota also get to do groundwork with the horses which works on a whole bunch of other areas.  Austen worked on communicating with the horses with speech and visual cues which works on his  communication skill and patience. (Ok there was supposed to be a video here but it won't upload...sorry Austen) The horses are such a blessing and can help with everything from motor skills to emotional needs and we treasure the opportunity for Reagan to work with them and the privilege  to help work with others like Austen and Dakota....and those of you who haven't started riding yet.  You know who you are and I'm gonna keep nagging you to come out! ;)

Saturday, October 26, 2013


I am tired beyond belief tonight from way too much work and way too little sleep...and herding my ducklings around.  But I have a couple more priceless Reagan anecdotes to share.  Reagan is incredibly popular everywhere she goes, and no big surprise when you witness the cuteness and charm the eeks out of her every smile and gesture.  So tonight was the Harvest Bash at Clarisse's school/church and while we will be going to our own carnival on the 31st Clarisse really wanted to go where her new friends were going.  We had only 1/2 to spare but we took our costumes down for a few minutes of trunk or treat and a trip down the giant blow up slide (big girls...Reagan couldn't even reach the steps...not that she didn't try lol).  Reagan's costume this year by her own choice is a lion.
 So I put it on her and we started walking in and she played it up by "rawr"ing at everyone we saw....I'll have to try and get a video because you have never heard anything cuter than a tiny two foot tall person sweetly growling "rawr, rawr" and smiling cause she knows she's cute.  Then there is her favorite subject...cookies.  So one of the trunks at the Bash was dressed up as Cookie Monster with a giant chocolate chip cookie in it....and Reagan spotted it.
  And pulled me over, pointing "cookie, cookie".  And these are just two examples from today....this stuff happens every single day.  Oh am I ever so glad she is in our lives!