In Remembrance (31 for 21 post 15)

I posted last year about Pregnancy and Infant Loss Remembrance.  That is today again.  And my heart aches for the mamas I know who have lost their sweet babies this year.  I can't even imagine that kind of pain.  For a mama there can be no greater hurt than to have her baby taken too soon.  I just talked to a mama who celebrated the anniversary of losing her little boy just before birth and celebrating her son who is just born.  One thing that she said was that she would take her baby any way she could get him...that whatever God sent was fine because he was  her baby and her  gift whether he would have had Down syndrome or illness or defect.  Her comment makes me so very grateful that Reagan was born to me,  because I love her and I love her Down syndrome.  The sad, hard truth is that over 90% of babies who are diagnosed before birth will not be allowed to be born.  Out of fear and ignorance and selfishness God's perfect gifts are tossed away.  Any of the mamas I know who lost their babies and pregnancies this year would have gladly kept their babies whether or not they carried an extra chromosome.  So tonight I am sending my love and prayers out to my friends who are hurting.  But I am raising my voice to speak for the thousands of innocent children who can't speak for themselves.

Looking Back and Looking Forward (31 for 21 Post 14)

Today was our annual family trip to the amazing pumpkin patch in Live Oak Canyon.  And being the sentimental person that I am I reminisced about previous trips.  So I took a peek at the post I wrote about it last year at this same time (I mentioned its an annual tradition right...).  It is always interesting to look back and see what has happened in a year.  Last year's post was picture heavy...today I forgot the camera.  And so did Grammy and Papa.  And so did Auntie Megan.  So we only have a few pictures to share,  but there are a few moments of cuteness captured on Daddy's phone.

Look at how big these girls have gotten!

And check out who's driving the car jeep this year...truth be told she's a better driver than big sister ;)

And a double dose of cuteness here.

This lil' punkin who had to be propped up last year since she couldn't even sit on her own!

But I have to say that my favorite part wasn't captured on film....I looked back at that post from last year and read this comment from Megan..."So precious.  I can't wait to make memories with my little pumpkin!  Sorry yes it is all about Sophia LOL"...last year all we knew of Sophia was this picture...

And this year....well let's just say that Megan is so busy being a new mommy that she forgot her camera so we have no photographic proof, but SHE WAS WITH US!!!  And we are so looking forward to so many more sweet new memories with all these girls!

Typical

I was busy today.  I mean crazy busy.  Making three...count 'em...three massive birthday cakes that probably fed over 100 people.  So when a mama is a little distracted what does a toddler do?  Get into mischief of course.  While I was busy creating this work of culinary art..

and this one....

Reagan decided to participate with a work of art of her own while I wasn't looking....

Typical.

 Are you catching a theme this month yet?

Fast....er

 Here is another glimpse into the life of my child who is suffering from Down syndrome, and her siblings who are burdened by her <smirk>.  Clarisse got a new pet for her birthday a few months ago, but up until now Reagan hasn't really noticed it.  Today they all sat down in a row, with Reagan positioning herself next to Cadence like the big girl she is convinced she is now that she's "doo" -two (Remind me to get a video of that sometime!), and watched it.

We all learned something today.  Reagan learned a new word- "tuht-l".  And the rest of us learned just how fast a turtle can go when a fascinated two year old starts to get close.  That turtle was fast.  And Reagan was faster...too fast for Grammy to catch her before she caught poor Squirt.

Never fear, big sister came to his rescue like any good turtle owner and relieved Reagan of her new fascination.  Most surprising of all though...Reagan didn't try to touch him again after we told her no.  Sometimes I love that extra chromosome ;)

Adventures in Audiology

We finally took Reagan in for her hearing test.  Her tubes made an obvious difference in her hearing, however they so far have not seemed to make much of a difference in her speech as of yet.  Now we don't really know if that is because she just hasn't been ready to learn how to talk (until the last couple of weeks anyway)  or because she still can't hear our words clearly.  And of course being a typical two year old she does not always listen when I talk to her....I think....or can she not hear me?  I lean toward the former, but don't want to assume that to the detriment of her speech development.  So, her hearing test today.  It was a behavioral hearing test and I so wish I had video of her because she was simply adorable during it.  In this kind of hearing test you are in a sound proof room and the audiologist speaks from different directions at different volumes and activates toys/lights from a different room.  She said "hi Reagan" from the right and Reagan swung right around looking for the voice and saying hi back.  Then she called "Reagan" from the left, and over to the left Reagan looks with her adorable little voice "yessh".  Then after a bit little miss smarty pants starting looking to the other side in anticipation of the switch.  She heard and "talked back"  pretty well to the voice cues,  responding to a fairly low volume.  She did not however show any movement or interest in the higher pitch warble cues.  Is this due to an inability to hear them?  Or the fact that they are boring and she is two?  I'm thinking a bit of both.  We also observed that she seemed to respond more quickly on the right hand side in isolating the sound than the left (and I have long) thought her hearing was better on the right hand side.  The audiologist told me that the difficulty in placing the sound is an indication of sensory (nerve) hearing loss.  She also mentioned that children with heart defects also have a greater chance of sensory loss. So after this test we can determine that she can hear and much, much better than she could before...no big surprise there, but we still are not sure if there is any sensory loss.  We will therefore be having a non-sedated sleeping ABR test (really cool science experiment looking test with lots of wires on her head) done in the next few weeks to determine exactly where her hearing is at.  She is not likely to need hearing aids in the long run, but at this stage of her speech development, we want to give her every advantage she needs to learn properly so we are looking forward to solid answers.  In the meantime I'm still going to blame her not listening on her very typical two-ness. :)

Standing on their Shoulders

I love October.  Have I mentioned that before? :)  One of the things that I like about it (aside from the dropping temperatures and the pumpkins)  is all the wonderful stories I come across about adults with Down syndrome.  Heartwarming stories.  Inspiring stories.  And the thing that gets me about every one of them is that anybody my age or older with Down syndrome had some pretty awesome parents.  Because as much pressure as there is in today's society to not give birth to a child with Down syndrome, at least there are resources both medical and emotional available to us to help our children become all they can be.  30 plus years ago that did not exist.  Back then if you gave birth to a child with Down syndrome you were encouraged to institutionalize your child with the reasoning that you weren't equipped to raise them and they would never amount to anything.  That is what faced the parents behind each one of these amazing stories.  And they said no.  They knew that they were what was best for their child.  They fought for inclusion and acceptance where none existed.  Without assistance they found ways to help their child maximize their gifts.  And we stand on their shoulders.  Every good thing that our society provides for our babies,  all of the therapies,  services, and treatments we have because those parents wouldn't take no for an answer.  So every time I meet an adult with Down syndrome (or other disabilities that fit the same profile)  I want to hug their parents and every time I read an inspiring story I just want to say thank you to the trail blazers.  Every time I see Reagan accomplish a goal with the help of therapy I remember those who have come before and smoothed our path.  I read this story today and was reminded all over again how grateful I am for the shoulders we stand on.  So here is my big public THANK YOU too all of those both well-known and unsung who fought for their kids and through them for mine!

Spread the Blue and Yellow

I may have to start a theme here...Anecdote Tuesdays.  I've got another good one from the music studio again tonight.  So everybody knows that October is Breast Cancer awareness month.  But NOBODY (ok very few people) know that it is Down syndrome awareness month.  And that is too bad.  So this year I've been pretty much telling everybody I see that they should add blue and yellow to their pink.  I did this again tonight about a display they have in the store of pink music-related paraphernalia and got a pleasantly surprising reaction.  When I mentioned it to one of the employees in front of the father of my student his response was "and they get overshadowed by this? (pointing to the violently pink display)  well I will spread the word...thank you for sharing that."  So there you go.  Spread the news.  Add blue and yellow to your pink this month and see who jumps on board. :)

Need some blue and yellow?  This is a butterfly bow I made for my girls and if you want one I'll make it.