I've let this go for many reasons, none of which are important right now so I'm not going there.  Bottom line, some people have worked hard to make a day for CDH Awareness, today is it.  I've gone "turquoise" (sort of) in honor of it.  The State of Texas has officially proclaimed it along with several others, over 30 I think.  If you're here, you know something about CDH. If you've been here long, you know a lot.  Share it today with someone who may not, especially if they are pregnant and haven't had their 20 week sonogram yet.  I can't imagine being surprised with this defect, it's just too much.  Having a team and knowing a little of what you've got ahead of you can help SO much. 

Read K's post here, it's perfect. She's been saying everything so well lately, I think I want her to start ghost writing over here!  I love the friends I've made through the blogging world.   

 

 

 Forgot the other perfect part about K's post--go leave a comment for her and she'll donate a book to Connor's Books!  I'm going to second her gesture and add a book to Audrey's birthday donation for every comment left too!!!  Let's make this year the biggest year yet!  Seriously, I've been having crazy hits lately--over 100/day but very few comments.  Come on lurkers (all you Jenny Scott readers, I see you visit!) or those who haven't made a shout out lately--say hello and add a book!

 

Lots to share but need sleep.....

 

 

*Audrey is having surgery next Thursday, it's a 3 for deal--3 procedures for the price of one anesthesia; new ear tubes, adnoids out, upper endoscopy.  All routine stuff but an intubated sedation nonetheless and I'm not excited.

 

*Please pray for this new CDH baby, Sofia Miller.  She was just decannulated (off ECMO) and is awaiting repair.  I haven't followed a baby this closely in a long time but I find myself checking their blog several times/day, she's SO precious and her parents are wonderful.  Of course, how could the mom in particular not be, her name is Jennifer Miller?!  Yes, you read that correctly, strange world.  If your name is Jennifer, don't marry a Miller and expect a healthy baby.  I'm just sayin. 

 

*start reading this CDH mom's blog; she's not a super regular poster (who is??!) but when I asked her permission to share, she thought it may motivate her to post more and I PROMISE it's worth the read, she is hilarious, f-bomb-worthy hilarious as well as perfectly poignant, real, and lovely!

 

*my friends Amy and Natalie ROCK; last week they came over when Nate was still out of town bearing 2 bottles of wine AND they put my kids to bed for me.  I have the BEST. friends. EVER.  We partied like school girls till past 1am, so silly and fun and perfect!

 

 

*see Austism The Musical; as in don't go to another blog after this one, find out when it's on next and set your DVR now, RIGHT NOW.  I cried lots of tears watching it tonight, not like watching-Old Yeller- tears, but sporadic tears of "yay for you" and "that sucks" and "I see the pain in your eyes and it's familiar and I hate it" and "wow, what a moment", do you want me to go on?  Just go Tivo the damn thing.  Even if you don't love someone with Austism, you'll be affected or at the very least, get a bit of education. 

 

 

 

When will they all live?  I wrote this EXACT thing last year but here I am again and since then, so many more have died.  Three at Children's Medical Center Dallas alone that I know about and I'm really not that in the know anymore.  The devastation a simple hole in the diaphragm causes is beyond my comprehension.  Yes, I get the medical part but seriously, it's 2008 and still nearly half of babies born with this damn defect die?  Seriously? 

 

Then you have the superstars like Riley who make it but then are gone in an instant; she was here 5 days short of her first birthday.  Today marks the anniversary of her death.  Her mom shared a beautiful video on her blog.  Send her some thoughts as she ends this day.  Another one of my favorite CDH moms wrote this beautiful tribute as well.  I came here a few times to write this post today and each time Audrey demanded my attention; how could I not just scoop her up and come back later? 

Seriously?  I haven’t blogged in 2 weeks?  I’ve written several in my head, they just aren’t making it here.  Let’s see, where to start?  Happy Easter!  We had a fabulous weekend starting with cousins and Aunt Nicole and ending with super fun and an UNBELIEVABLE meal with Crowes and Hawkins.  Jason Hawkins is a super chef.   I think I gained 5 lbs this weekend and I was already up—it was worth it though, SO worth it!

 

Let’s go back a bit now…

The Ides of March, ugh! 

Phoebe turned 12 on March 15^th.   Although a happy milestone, our sweet first baby isn’t doing so well.  She’s lost her spunk, about 10 pounds and just isn’t the crazy bulldog we’ve loved all these years.  A bulldog’s lifespan is 8 – 10 years and we’re afraid we’re living on borrowed time.  So what do we give her for her birthday?  We ship her off to a strange home.  We were going out of town on a whim and our sweet nurse agreed to keep her but had to get her Saturday night.  I knew she’d be in excellent care, but felt awful that we were sending her away on her birthday.  Karma got me back though…after dropping her off (we met at a CROWDED mall parking lot), while I was circling the lot, I nearly hit a pedestrian.  When I say nearly, I mean had to slam on the brakes, the woman was touching my bumper and I thought I was going to die as I ‘m sure the woman did too.   NO, I wasn’t on the phone and NO, I wasn’t not paying attention (my husband’s first questions).  I literally didn’t see her.  BUT!  Guess who saw the whole thing?  My friend Jenny and her husband were there, as in right behind the poor near victim.  It was one of those crazy moments you can’t quite describe and to see someone you know in the midst of it was just the weird twist to make it that much more memorable!  UGH!  If I could share Jenny’s voicemail from after, I would, it’s that funny.  I think I was shaking for at least 2 hours.  Not an experience I recommend.

 

Anyway, spent a few days in Oklahoma City (Nate’s new client is there and he’s been going 2-3 day’s/week ).  We had a great time--that is a great city!  We got to meet Jana and her kiddos too!  It’s weird to meet someone you feel like you already know so well but it was like we were old friends reuniting, no awkwardness at all.  Of course it would have been more perfect if it was Drew and Audrey meeting for the first time and he was clearly missing for me but it was a great time nonetheless.  Jana’s kiddo’s are precious—sweet, fun, and perfectly behaved.  My three were a tad crazier (to say the least!) 

Alright, I think I’ve caught up a bit and it’s late.  I have a few blogs to share, but I’ll do that tomorrow (really, I’m going to get more regular at posting, I promise!) 

 

 

 

For those of you not privy to how crazy Texas weather is...

The snow started late Monday night but was pretty minimal.  By Tuesday afternoon we shot our Sugar pics in 60 degree weather!  Wed was gorgeous, at the park without coats and you saw what we had Thursday afternoon!  Friday was cold but sunny--the kids LOVED driving this afternoon to see all the "dying" snowmen!  Saturday is supossed to be freezing, CRAZY!!!

We went to the Crowes today for a snow day playdate (Jason's preschool is only 2ish hours and since school was delayed 2 hours, he got the day off!).   If you ever want to see a superstar mama in action, spend some time with Stacy Crowe and her kiddos.  Seriously, she is hands down the best mama I have ever seen and not only do I see a lot of great mamas (have you met my friends?!) so I know, but my kids think so too.  Jason asked today if he could stay there for "this many days without you and daddy" (he was holding up 5 fingers, ouch!)  Audrey took awhile to be convinced but I think it's cause she remembers that Aunt Stacy was there during her early days and has placed some blame on her or something (she wouldn't let Stacy hold her without screaming her entire infancy!) but she's completely come around especially today when she got loads of her FAVORITE snack from her, marshmallows!  Ethan's always been a big fan, he took his first bottle from her for goodness sakes, something no one else had accomplished yet.

 

Anyway, here's the deal...watching her interact with her kids or mine or anyone's is like watching a parenting video.  Seriously, she's fun, she's patient, she's creative, she's loving, she's interested and fascinated, and above all, you can tell that even when the job is hard, she loves it.  REALLY. LOVES. IT. 

 

Today the kids were playing playdough (something that totally gets me stressed out, especially over carpet).  Jason was making a "sandwich" and when she prompted him to get another color to make some cheese, Jason grabbed a felt Elmo instead; she just went with it much to his delight and his sandwich had "elmo cheese".  I would have been redirecting talking about ruining elmo and mixing the colors, and making a mess, yada yada, yada but she just goes with it and made Jason's sandwich memorable. 

 

I can't even begin to tackle a description of how she manages to be a special needs mom with the energy, patience, dedication, and love that she does.  I just can't do it justice.  It is a gift to watch and support.  And, I reap the benefits too; Jackson never used to call me by name or look me in the eyes; I barely remember those days now! 

 

She's helping others too.  Austism Speaks just published a 100 Day Kit to give parents of newly diagnosed kiddos a resource.  Stacy's name is on the top of the list of parent reviewers, check it out on page 2 and pass the resource along to anyone you may know needing it, 1 in 150 people, that's A LOT!   

 

 

Oh y'all!  Wanna see some art?  Check out the sneak peaks from our recent meeting with  my fantabulously talented friend Jen!  Seriously, could that girl be more gifted?  Just love how she captures us.  Her sweet words brought tears to my eyes too.  Thanks Jen, you're the best!!

 

Look for fun in the snow pics later, but I've got to get dinner going now.  Have a super weekend!  We're attending a special CDH boy's 2 year birthday party, can't wait!!  Happy Birthday Jackson!!!