Wednesday, October 7, 2015

Never say never...or even not right now

Show of hands...who knows how much Reagan loves music?  If you didn't put your hand up we need to do a little remedial Reagan education for you, see me later to schedule ;)  This girl sings her way through every day.  When she could string two words together to tell us what she wanted it didn't stop her from singing every word of Jesus Loves Me.  She puts music up on the piano and "accompanies" herself.  She has been playing her baby piano since she could sit up.  So I always said someday I would teach her.  When she was ready.  Which I assumed wouldn't be for a while.  After all I usually recommend five to six as a starting age and started the older girls at those ages.  And while it has never bothered me that Reagan often masters skills later than many children, I did make the assumption that learning to play the piano would be one of them.  Until one day she did something that showed me her sequencing skills and the music teacher in me noticed.  And I realized she was the about the age for that.  So I thought why not see what she can do.  I picked up a book that I thought would be appropriate for her temperament and learning style...and then promptly got too busy to do anything about for a month.
 But today she was trying to copy her sisters practicing so we sat down for our first "lesson".  Lets just say it won't be our last!  The joy shining on her face that she was learning to play...and make no mistake she  knew that she was learning for real...well I don't think I'll let any of my teacher friends see it, they might want to steal my student ;)

 She listened intently.  She followed directions devotedly.  She sat up straight and showed how to play with curved hands just like mommy said.
Then when we were done she went and told Daddy all about how we learned LOW (insert growly Reagan voice) sounds like the bear and HIGH (insert adorable squeaky voice) sounds like the mouse, and how we curved our fingers.  Then she went back to the piano, opened her book and practiced.
  I don't know how fast she will learn, but as I have pointed out to all my parents and particularly the special needs ones, she is learning and loving it and that is all that matters.  So who is looking forward to a Reagan recital?

Tuesday, October 6, 2015


Witnessed at recess this morning...

"Hi Reagan, come ride the two seat bike with me"

Stops. Turns around.

"Reagan, I love you sooo much"

Continues riding.

The world as it should be through the eyes of children....and a melted Mama's heart.

Monday, October 5, 2015

My Rainbow

One of my nicknames for Reagan is Rainbow.  It started as a cute play on her name, but the more I used it the more I realized how appropriate it is.  After all a rainbow is a promise.  A promise of hope. A reminder of all the good that come through and after the storm.
  And that has always been what Reagan's life has done.  Even the hard stuff like spending 75% of your waking hours just trying to make and get enough food into your infant.  It makes us stronger and better.  And it leads to amazing things you would never dream new friends you couldn't possibly have met.  I have looked back over the last five years and seen that the promise, that promise of good and a future and a hope, has never wavered nor failed to be fulfilled even when it seemed too hard or too scary.  And when I look back at the hard stuff like open heart surgery I realized that I wouldn't change it.  I truly wouldn't.  Not even to keep Reagan from pain, because it is all a part of growing into who we are supposed to be.  And there is a purpose even if we don't see it.  Sometimes we get to see a glimpse of the bigger plan,  like being able to be a support for someone walking the journey behind you...that couldn't have happened if we didn't go through it.  That is the rainbow in our lives.  The visible tangible reminder of the promise of Good.  And that is what Reagan does for me every. single. day.  Seriously there is not a day that goes back that I am not supremely grateful that Reagan was born "defective" because she gives the world something it sorely needs just by being who she is.  My Rainbow.

There was a beautiful rainbow this evening just before sunset coming down behind my beautiful rain dancer, but I couldn't get it with the camera.  It reminded me of why I call her Rainbow though, so I thought I'd share.

Sunday, October 4, 2015


Taking Reagan out into the world is always an interesting experience.  She is five years old (and won't let me forget no matter how much I try to deny it) but she weighs a whopping 27 pounds and hasn't yet broken three feet tall.  She is the size of a 3 year old, and a smallish one at that.  She is delayed in most areas for a five year old, but quite advanced for the 3 year old she looks like.  So people watching her get confused and thoroughly charmed by her uniquness.  To make things even more humorous I tend toward oblivious about the gap between where Reagan is and the general expectations of a child her age.  I have never been bothered by her delays so I forget that she is perceived differently by others who are used to expecting certain things from a certain sized kid.  I have been there watching her learn how to walk, then run, then climb a tree and know that her view of her capabilities is on par with reality and with her age, but others see her attempting something that no 2-3 year old should be doing by herself.  I can't tell you how many times I have been in conversation with someone while she plays and they lunge to make sure she doesn't fall off a chair she's climbing on only to have to explain that I really am a responsible mother...its just that she looks too small to be trusted but she really is five and knows what she's doing.  We mothers tend towards sheltering kids from harm and it is a hard habit to break just because I say that your perception is skewed (so never worry if you have been the nervous one while I seemingly ignore the situation...I get it lol).  See I have the advantage of five years experience, plenty of therapists training, and a kiddo who won't allow me to shelter her just because she's small and has challenges.  And it is good for me, it makes me a better mother to learn not to be overprotective out of perceived insecurity.  We all do it, especially with those we care about, but it isn't good for us.  And it isn't good for our kids...they need to be able to stretch their wings and learn from experience.  I can only imagine what Reagan wouldn't be able to do now if I held her back based on what it seemed like she was capable of.  And she's teaching others this lesson every day too as they watch her.  She's even broken all the wonderful caring ladies at church of the habit of taking her out of the tree every time she tries to climb it with the big kids ;) I will shelter her as best I can from things no child should have to face.  And I will shelter her from anyone who tries to tear her down because of who she is.  But I won't hold her back because she's small and different.
And when it rains...well I think she's got it covered ;)

Saturday, October 3, 2015

Dreams Come True

This year has been significant for Reagan's personal development.  As I mentioned she is asserting herself in terms of her needs and desires.  Along with that comes more awareness of how to express these as well as learning things like what a birthday is all about.  Reagan's birthday was a couple of weeks ago but due to quirky circumstances (can we say three weeks of antibiotics plus an allergic reaction to them...blerg)  her party was delayed until today...and she has been waiting every day of this three weeks for it.  She knows for the first time ever this year that she is turning a year older...she kept telling me she was "4 but 5 on birfday mommy"  and now tells everyone emphatically that she is 5.  She gets it.  She knew what she wanted "choc-o-let cake",  "Elsa party".  She knew who she wanted to be there.."Graham Cracker (Grammy), and Papa, and Mindy and Abby".  She did not know, however that what she only dreamed about (yes she did babble in passing about it, but she thought she was pretending) could really happen.  I couldn't help it...Frozen taught her how to talk...what is a mama supposed to do?  She understands what birthdays are now...  So suffice it to say that her reaction when she answered the door and was greeted with...

Seriously,  she was starry eyed at the idea that she got to sit in Elsa's lap for storytime!  For real...she kept patting her and saying "Elsa, and I'm Anna" (she was in an Anna dress).

Singing with the REAL ELSA!

I kid you not,  she tried to leave with her.  Told me goodbye and everything and walked out the door to go to Arenndelle with Elsa....the only thing that got her back in the house was the promise to visit Elsa and even that only worked with the kicker of eating chocolate cake and opening presents.

Good call mama.

The first birthday she understood is likely to be one she'll never forget.

Friday, October 2, 2015

Involved and Self Sufficient

Reagan is growing up and she knows it.  She insists on doing whatever everybody else is doing, especially her sisters or friends.  If you don't pay attention to her requests you better watch out because she is not above helping herself to whatever she wants....evidence...the peanut butter sandwich she made all by herself which involved pulling a chair into the pantry to reach the peanut butter and leaving smudges all over the tables...and walls...and herself.  But she did it all by herself!  If something is too big or complicated...well then she insists on "helping" or taking turns.

She tied her own blanket, helps (slows mommy down lol) vacuum, bosses the dog around, plays the piano with anyone who lets her,
and generally insists on not being left out.....basically your typical five year old ;)  Don't tell her she can't...she won't listen...


Thursday, October 1, 2015

October AGAIN?!?

Wow! This year October really snuck up on me and took me by surprise! Now just being honest here we have gotten so busy with normal life that I almost decided not to blog every day this month...but I know that some of you Reagan lovers look forward to this time every year when you get your daily dose of Reagan here I am again :)  Also, to be frank, there are a few things I need to talk about this month that will ruffle feathers, but I feel its important (again) and this is frankly when I get the extra push to put it out there.  And just to keep it interesting, I have done a TON of learning this last six months about biochemistry and other geeky stuff that I might try and share....but mostly...I know you are all here for this....

Happy Down Syndrome Awareness Month!
Are you rocking your blue and yellow?