August 22, 2011: Welcome Baby Julian!

Heaveno!

Well, he's here!

Julian Clayton Ringgold was born at 4:47 am today weighing a whopping 9 lbs. 2 oz, and 20.5 inches long.  For comparison, Ali was 7 lbs. 6 oz, and Bella was 7 lbs. 12 oz.

Thank you all for your incredibly generous and supportive comments last night. Thank you for understanding that there were such a roller coaster of competing emotions going into today.  Julian threw us a bone and allowed us to avoid the added anxiety of the morning...

... by coming a few hours early!

I finally got into bed last night at 12:15 am, and tried to fall asleep.  Shortly after, I get a poke in my side, and I hear, "Get up, my water broke!"

Three words that will wake you faster than any cup of coffee out there!

Turns out at around 1:30 am, Ang got a sharp pain, then again a few minutes later.  She got up to go to the bathroom when she felt like she was leaking.  "Stuff" leaked onto the floor,  and that's when she noticed she had passed her mucous plug.  That was about 1:45.  My first thought was, "Man, I'm glad I didn't blow off doing the dishes till the morning!" followed immediately by, "Oh man, I wish I had shaved and packed before going to bed!"  Luckily, I can pack in a few minutes, and my suitcase was standing at attention, waiting for clothes to be tossed in it.

Twenty minutes later, Ali was dressed, the minivan was packed, and we were on our way, with Ang averaging a contraction every three minutes.

2:00 am on a Monday morning is a GREAT time to rush to the hospital even in southern California, let me tell ya!  NO Body on the roads.  The lights all magically change for you as well.  I was averaging about (well... more than the speed limit) when I had the thought, "There are cops trolling this main street all the time.  I hope I don't get pulled over, though I think this really is the mother of all excuses."  I pictured myself telling the cop the magic 5 words of exoneration...

MY WIFE IS IN LABOR!

LOL.

We got to the emergency room, and LOVE that they had valet service!  In we went, and we were soon met there by Ang's parents who live in nearby Huntington Beach.  Once again, GOD LOVE THEM for being so close and so dependable when you need 'em!  They were there cheery as could be, and offered to take Ali back to their house so she could sleep.  It would be 8 am before Ali would see us again, so this sounded wise. I just can't imagine what we would have done with Ali without grandma and grandpa to the rescue!



Once they left, things began to progress rather quickly.  Ang was in full contraction mode now, and recounts that this was easily the most painful thing she has encountered.  Since both Ali and Bella were also breach (and Bella was too soon for a safe VBAC), they were delivered via C-section early enough that Ang never went into labor before.  The entire labor and delivery staff had to be called in, so there was a lot of simply waiting for team members to get to the hospital.  All the while, Ang's contractions were roughing her up some.  Finally, they let her lay on her side, and this helped a TON.

Once our anesthesiologist (who still had bedface!) came in, we gave him his pick from our bag of gifts we brought the team, then gave him our delivery CD and explained that we had a program of music to use to lower pre-surgery anxiety, and Julian's birth song for when he was delivered.  The anesthesiologist is usually the guy or gal in charge of the boom box in the Operating Room.  He mentioned to me that he has never had a family bring in their own music.  My guess is he's never had a music therapist as a patient!

Anyway, scrubs on, docs in and out, and as soon as everyone was ready, we all headed to the O.R... except for me.  I got a chair in an empty PACU (Post-Anesthesia-Care-Unit) to sit in and wait my turn.  For those not familiar with the C-Section process, it takes roughly 30 minutes to prep the mom for surgery.  If dad is going to be there, they bring him in about 5 minutes before and he gets a stool next to mom's head.  So, there I was at roughly 4:10 left to my own devices.

An interesting thing happened.

Nothing.

I was worried this would be another powerful moment like with Bella (Read the full story in Bella's Blessings: a Humble Story of Providence... it is intense), and put away my phone and allowed the moment to unfold, if it was to be, but interestingly enough, nothing happened.  No visitation from anyone from beyond the grave.  Honestly, even a little boredom and certainly the time of day and the amount of sleep (less than 90 minutes) didn't help matters.  Anyway, before I knew it, I was ushered into a familiar scene.  Music creating a safe container of comfort and familiarity.  We selected a program of music from Hawaii.  We have taken 3 trips to Hawaii and have always embraced the aloha spirit.  I have brought home music from each trip that we listen to while there.  It helps take us back there whenever we listen to it.  It's one of the reasons I wrote Julian's song on the ukulele.

As they worked on Ang on the other side of the blue sterile screen, we reminisced about our last trip to Hawaii and I kept her brain moving through the memory files from that trip right up till they popped the J-Man out.  Imagery is a powerful tool to distract/divert the brain from any stimulus that may cause pain, anxiety, or nausea.  We wanted to make sure that no anxiety crept in, so the music and memory/imagery cues were just the ticket.

When we heard the phrase, "The baby is out!"  I jumped up to peer over the screen.  when I looked down on Ang's abdomen, this GIGANTIC purple human was lying spread eagle on his back letting out a BARK!  Julian was huge!  Everyone in the room was like, "Look at the size of that baby!"  At 9 lbs 2 oz, he certainly isn't the biggest fish in the pond, but considering his mom is 5'0", that's a lot of baby inside a little torso!  I was immediately scanning his skin to make sure it was all there.  I'd be lying if I told you I trusted the test we did 100%.  I knew that it wouldn't be until I pinched that boy with my own fingers that I knew EB was past us for sure.

Over to the APGAR table (he scored a 9.9) and take my first pictures of Julian.  When they put on his diaper, it scraped some of the skin off his thighs.  I immediately got nervous until the nurse reassured me that it is common for babies to be "peely."  Okay, I thought.  Then I started pinching... and pinching... and pinching!  It was so fun!  His skin endured my ultimate unscientific test!



Off to recovery.



Look at that woman glow!

5:15 am and the lion's share of the day was already behind us.  We hit our room at 8 am on the nose.  It's been a long, relaxing rest of the day up in our room.  Julian latched on like a pro, so feeding has gone really well.  He's pooping like a champ, cute as a button, and generally mellow and sweet.  The few times  I sang his song to him, he completely opened up his eyes (on the APGAR table and during his bath in the nursery) and gazed at me.  That was really sweet.  Know who is smitten as well?

Ali!



She held him in the chair at least 3 times today and just loved spending time with him.  It is so great; all she ever wanted to do was love on Bella, but Ali was smaller, and Bella, well, between EB and having a giant head to boot, was just too big for her to hold.  Now, even though J-Man is bigger outta the gate, so is Ali.  I predict an amazing hands-on bond between the two.



Julian's fabulous socks of the day...





Daddy's fabulous socks of the day...


And how is momma?  A champ.  After enduring what she described as the biggest pain in her life, she has benefitted from great pain meds and has been happy and sweet all day.  She is doing great.  Stuck in a bed all day is driving her a little nuts, and she is looking forward to getting out of bed as soon as she can stomach it.



Look at that cake grandpa made!





Family, friends, and our old minister Dennis (faith) were all in attendance in our room.  Thank you to all who visited today, and thanks to Sara Cooper for taking some amazing pictures seen in the slide show.  Gotta check out the slide show because it features JULIAN'S SONG!



Alright, I'm fading out.

Bella's been here all day, by the way, as I'm sure you would have predicted.  There have been mixed feelings at times, and we have talked about them as they have come up.  It's been natural, and above all, joyous.  I am grateful for the joy in the day.  I hesitate to say we deserve it, but I think we deserve it. :-)



Thank YOU for sharing in this joy.  You have shared in a lot more heartache than joy with our family, and I think it is good for all of us to enjoy this moment.  Together.  In this virtual family we have become.



God night.

Bella...

Ali...

Julian...

"Twas the Night Before Julian...

Look mom, no hands!

Heaveno!

... and all through the house, not a creature was stirring... not even Lucy (our pet chihuahua).

Wait, that's not entirely true.  I'm still stirring!

The list of to-do's is complete.

Gotta clean the dishes and throw some clothes in my suitcase.  We depart in the morning at 9:00am.

The nest has been feathered and is ready... enjoy the pics,



The entrance to the nest...



Those shades block out EVERYTHING when drawn...



J-man's Crib and Wall...



... and changing station built in to the closet...



Don't worry, Aliville is still girlieville...



Side by side...



And in this corner... BELLA!



Three little piggies...



Swing and bouncy seat... check!



Play gyms... CHECK!

, but I'm not.

I look at the last picture of Bella I posted, and I resist in my heart.  I feel so guilty for not being filled with excitement.  There are those who would give anything to have the privilege of delivering a baby boy tomorrow.  The grief still swallows so much of my heart.  Thank you for all your supportive comments as I continue to bare all on this blog about this journey.  They have been really comforting.  I sit here tonight physically ready (I even weaned myself completely off my best friend coffee this summer to prepare for the sleep deprivation... now when I have a cup on Tuesday morning after the probably-coming-all-nighter, it'll actually pick me up!), but I would be full of it if I said I was emotionally ready.

We are returning to the scene where life took its fateful "left turn" a little over 2 years ago.  Same hospital, same doctor, same floor, the operating rooms are all identical... being a visual / kinesthetic learner and experiencer, this all creates some powerful flashbacks for me.  I'll be brave, and have my sh*t together, but just picturing where we are going tomorrow, all I see are images and the corresponding feelings of terror and disbelief that have been imprinted on those visual scenes.  I can see Ang's OB walking down the hall in her scrubs toward me... me lost trying to find my way back from the NICU to Ang's room for the first time... I can see me in the break room trying to get my bearings after almost fainting in the O.R. after seeing Bella with all her skin peeled off and never grown in, on her leg, hearing and seeing Dr. Vijay Dhar say in a thick accent, "It is most likely Epidermolysis Bullosa, a genetic birth defect."  Birth defect.  Two words a new parent quietly prays to God he or she will never hear.

But, who are we to expect God will accommodate our needs?

The key word in that sentence was 'expect.'  So much of Bella's life and death was a painful lesson for me to learn about prayer and expectation.  I used to think I had prayer figured out.  I though I knew the 'right way' to pray in that if I prayed 'that way,' God would HAVE to answer my prayers!

Boy, did I have a lot to learn.

For me, prayer has transformed into a conversation.  It used to be a wish list or request list. Then, it morphed into a gratitude list of things yet to come (that I hoped would come to pass).  Then, it morphed into a gratitude list for things that had come to pass.  That was probably the high water mark for the many stages prayer has moved through.  Since then, it has slid into a distant and cynical conversation.  In other words, I confess it's still not back to where it was the day Bella died.  I also know that this is okay, that God is okay with me healing in my own time, and waiting for the day when I'm ready to connect again, but I'm still not there.

So, for tomorrow, I am afraid to even ask for a smooth day.  I feel... burned.  Afraid to ask again.  Afraid to be vulnerable.  Afraid to risk.  I feel like tomorrow is going to go how it's going to go no matter what I pray or say.  The best I can do is be prepared for anything and, to the best of my current ability, generate peace, politeness, courtesy, gratitude, strength, and humility.

Ang and I had a great talk tonight about all the mixed feelings swirling through us both.  I will tell you I am so grateful to be walking through my life with such and amazing partner.  She is just the most wonderful woman on the earth.

Sorry for the dark tone of the post, given the eve of what I'm sure will be a joyous day.  It's just a little more complicated.  God has a plan.  We aren't able to see or comprehend his plan, but I still trust he has one.  Even if he doesn't, me just telling myself he does helps me.  After all, who really knows?  Only God.

God night.

P.S.  I'm also sad because this post represents the last photo I have of Bella before it all went South for her.  I liked your suggestions, and I will start over, but just as tomorrow is a new beginning, tonight is another end...

August 18, 2011: Coming Down the Pike...

Heaveno!

Holy cow, T-minus 3.5 days till Julian emerges!

Gotta a couple of tasks left (scour the house over the weekend, set up the swing, convert the crib, and of course, buy that attachment to read my Scandisk), but man, we are coming down the pike here!  It really hit me today when I was informing my colleagues at the hospital that I wouldn't see them for 2 weeks.  There is always so much on my plate that sometimes I don't get present to something that is upcoming, because frankly I am present to the 65 things on my plate today! LOL.  One of my big challenges is project management, because I go go go from one day to the next that I have a hard time keeping my eye on the long term clock as well.  I have several work-related projects right now that are giving me daily anxiety because this just isn't my strength.  Oh well, everything regarding Julian's arrival is going pretty according to plan, so that's good.

On the flipside, I'm really bummed that I have come to the end of Bella's pictures.  I have the perfect picture to end with on Sunday, which means I have tonight to pick one last picture.  I feel like I'm gonna lose a piece of her all over again.  I, too, have come to practically depend on the 3 photos a week to keep her present in my life.  I have the photo collage posters our friends made for the CA memorial in my office and in the kids' room to look at daily, but the ritual of ending the posts with a picture of her... Maybe I'll start over... have Julian's pic of the day on top, and Bella's on the bottom, but what about Ali?  That would be really tedious as her pics are on a separate hard drive and when I moved them there, the hard drive "organized them" in its own way so they are a little disjunct in their order.  I dunno,  I just thought I might be leaving Ali out of it if I bookend with photos of Julian and Bella.  The blog is still "Bella's Blessings," so I don't want her pictures to go away.  I know I've blogged about this before, but the day is just about upon me.  Start over or stop... hmmm...

I'm tired.

5 hours of coaching and mastermind calls with no break await me from 9-3 tomorrow, so I think I'm gonna hit the hay.  Have I mentioned in addition to loving my work at the hospital, how much I love coaching people?  It is such a privilege to walk with someone and encourage/motivate/inspire them to live their best life possible.  The inspiration THEY feel when they accomplish things they either thought impossible/ unattainable, or have just procrastinated on for what seems like forever... it is a joy to witness.  I am really blessed to make an impact in people's lives in both lines of work.  Good stuff.  I think I have put it out there maybe once before, but if you have been thinking about the difference having a coach would make in your business/career/family, drop me a line and we'll chat about it.  Email me at tim@sonicdivinity.com.

Hey - off topic here, but Christin, you posted a comment on Sunday about your boy Matthew.  You should email my wife Angelique at Angelique@puckfund.org.  She has been working on an awesome "fundraiser-in-a-box" document that equips and empowers anyone looking to fundraise!  Thanks for the comment, and good luck on your EB journey with Matthew.  If there is ANYTHING we can do to support you, email us.  We're here for you.

Okay, falling asleep here.  Gonna try doing that in bed instead of at my desk.  I think it'll  be more comfortable.  Much love and gratitude to you all for still being here with my family and me.  You inspire me to live my best life possible, because I know I'll be reporting to you 3x a week on it! LOL.  Thanks for keeping me accountable for leading my best life!

God night.

August 16, 2011: P.... T.... A....

Heaveno!

Whoa.  I just went to my first PTA meeting last night.

Just when I thought my wild and crazy twenties couldn't be further packed into the deep freeze of my memory...

I attended a PTA meeting.

Getting married... no prob...
Becoming homeowners... loved it!
Entering parenthood... amazing
The condo in suburbia to fit said baby and parenthood... well...
Driving a [gulp] minivan... that was a tough one,

but attending my first PTA meeting... I think I'm still in shock.

Before all you PTA members start hatin' on me... it's not negative.  It's just... when did I grow up?

C'mon, you remember those three letters as a kid, right?  (Short for Parent Teacher Association)
Suddenly, last night, I'm in a hot assembly room in a 2 hour meeting approving budgets for jog-a-thons and campouts, field trips, et cetera.

By the way, what a WAKE UP CALL as to how totally screwed we are.

I'm gonna go on a brief run here, so bear with me.

Think of the old phrase about how do you boil a frog?  Answer: slowly.

That is officially our school system.  Why is this hitting me tonight?  Relevance.  There is simply too much information in the modern world to stay on top of outside of what is personally relevant.

Now, the fact that Ali will have three days a year of music appreciation - not even education - is relevant.

The fact that her school, which is touted as a good school, can only staff a nurse for 580+ kids 1 day out of every week - is relevant.

The fact that her school week is only 4.5 days every week - is relevant.

The fact that teachers and administrators are forced to stay home with no pay which equals no education - is relevant.

Yeah, yeah, welcome to the club, Tim, where have you been?

Well, my eye has been a little distracted by this little thing called EB.

What a monumentally far cry from "when I was her age..." LOL.

That's all the stuff I learned about just last night. (except for furlough days... knew about those, and heard about music, but I guess I was just in denial that in Orange County, CA (not exactly the poorest place on earth), we dumped the arts in the trash for our kids.)

I will say this, I think Ali's principal is amazing.  The grace in which she had to deliver so much of the news last night, and the way in which she handled all the parents' complaints and concerns was amazing, and I made sure I told her so right after.  Man, she has a tough job.  I have a whole new respect for how handcuffed our educators are by our government.  She is told how many staff she gets and that's that.  She simply has to make it work.  Just like the teachers are told how many students they're getting, and how (little) resources they are receiving, and that's that.  They just have to make it work.

I feel like Rip Van Winkle.

Like I've been asleep while all of this has gone to pits.  Now I've awoken to this unfathomably big mess... and I know it's this bad and/or worse in too many other cities and states to even count.

Where my anxiety is coming from is that I like to be part of the solution, so last night I tentatively signed up for a couple of chair positions (dad's club and talent show- nothing major, just a way to support and get my feet wet).  What is predictable is that I will want to "SAVE THE SCHOOL SYSTEM" just like I want to SAVE EB KIDS.  I already run my music therapy company, PUCK, the Regional Conference for my professional association, and co-run a pretty awesome little family.  I know I'm going to have the time of my life participating in Ali's education, but last night served as a wake up call for just how good I had it growing up.

Alright, alright, please don't beat me up for any of the above, I just needed to get it out.  When I went up to the principal, I told her to use me up; I work from home 5 minutes away.  She warned me that she probably will, and that's cool because ultimately, this is exactly the way we set up our marriage and family.  There is nowhere I need to be that is more important than "around."  I never want to hear later in life, "Dad where were you?  You were never around when I was growing up."  Not gonna happen.  Just the fact that I got to run music class one day this summer at Ali's preschool was AWESOME.  I can't wait to do that throughout her education.

The other thing I noticed last night was the 80/20 rule in action.  This rule states that 80% of the work is usually done by 20% of the community.  Well, we have over 500 kids in our school and how many parents showed up for the first PTA meeting of the year?  Maybe 50.  Of those 50, I could tell who were the 20% of THAT group who do all the work.  That's how the principle works; it keeps subdividing by nature.  I could pick out by the end of the meeting who were the 10 women who have been shouldering the balance of the burden year in and year out.  They raise roughly 40-50k a year to contribute to the school, and these are some Super-Moms (and one or two dads) that get it done.  Work full time, parent, then run a non-profit that hosts maybe 30-odd fundraisers over the year.  Crazy.

I'm in.

I'm crazy, too.  LOL.

Kudos to all of you reading this that are members of your PTA.
You, too, are part of the solution.  
Cheers to making the best out of a mess of a situation!

God night.

August 14, 2011: An Unwelcome Visitor...

Heaveno!

First off, thank you for your incredibly generous comments this past week!  They just warm our hearts in more ways than I can articulate.  We feel the love, and there's nothing like it.  Thank you again.

The unwelcome visitor?  A stomach bug has waltzed into the house today. All three of us have it, and it came on at exactly the same time.  We made cookies this morning, and I'm wondering if the eggs or butter from the recipe may have been bad, I dunno.  All I know is that Ali's and my stomach are in knots, and I feel like ______ .   Good times!  Better this week than next week I suppose!

Can you believe Julian is going to be here in like 7.5 days?  It is beginning to blow my mind.  We spent a lot of the day continuing to feather the nest this weekend.  I think we are about 90% there.  Today, I hung Julian's name over his crib, and had to move Bella's poster.  It was a little exciting and a little bittersweet at the same time.  Bella has a nice corner of the room devoted to her, with her framed poster and photo collage on either wall of the corner of the room; her purple butterfly wings from the hospital hang between them.  I really would like to show you pics, but I keep slacking on buying the necessary adapter to pull pictures from my camera's scandisk.  I PROMISE to take pics next weekend when the crib is converted back to a crib and the room is "ready."  We are still using the crib as a toddler bed, because it makes a great little couch for mommy to sit on when we are all hanging out in the room together.

At night, I sit in the corner with my ukulele, and play while mommy reads Ali a bedtime story on "the couch."  Then we sing Julian's song (sometimes Ali is into it, but a lot of the time she just tolerates it), then we turn out the lights and mommy rubs Ali's back (and/or cracks her toes upon request... don't ask) while daddy plays and sings lullabies.  Ali now falls asleep to live lullabies really quickly and it has shortened the bedtime process tremendously since implementing this.  Singing Julian's song nightly has brought music back to bedtime which has been nice.  One might think that music is going 24/7 around here, but the honest truth is that because it is also my job, and my instruments are in my hands at work all day, I'm not always excited to break 'em out at night.  The uke has been great because it is really small and a) easy to carry around (doesn't bang into things) 2) easy to start playing something fun and happy, and 3) a new instrument, so there is lots of exploration for me every time I play it.  I really like that part.    I've been playing guitar for 23 years now, and while there is lifelong learning and exploration there as well, the uke feels new in my hands... like "honey, I shrunk the guitar!"

Momma is spending rapidly more time resting over the last 72 hours.  Her energy has just disappeared; to which I remind her that she is working harder than any of us!  I've been happy to let her and Ali sleep in (more uninterrupted soccer for me... tee hee... the new season in England started yesterday much to my joy), and take as many naps as she needs/ wants to.  I can't pretend to imagine what it's like growing such a gigantic living thing in your body relative to your own size, or, well, relative to anything, so I figure it's my job to help pick up the slack and make things as easy for her as possible.  I hope I'm doing okay, because like I said, I think she's got the hardest job of all!

Last but not least, I want to plug my birthday wish again...  I am giving up my birthday (August 31) to continue to raise funds and awareness of the absolute groundbreaking research taking place at the U of M with EB right now.  As Jane so fondly says, I want to shout from the rooftops what they are doing up there, because I know people really don't (yet) appreciate exactly what is unfolding in this trial, because if they did, research funds would be flooding the offices!

Without restating all of it again, if you want to read WHY the U of M study is SO UNIQUE in the EB world, read the short essay I wrote by CLICKING HERE.

Thank you to all of you that have donated in the past and in this current drive.  We write checks ourselves to MN and to other places as well, and I know that many struggle as a result of the current state of the financial world we live in.  Yet, despite that, you have given.  EB doesn't care how the stock market is doing, or who's in public office, or what anyone on any cable news channel is spouting off about anything.  EB kills kids, it disfigures kids, it wrecks marriages, it traumatizes families.  It's no walk in the park for anyone touched by it.  It is a great reminder of how good many of us have had or currently have  it - heck if you are blessed enough to have a computer and internet access, you are better off than most of the humans walking the earth, myself included!  SO, please, even a dollar makes a difference.  Will you take a minute and donate a buck?  Thank you as always!

Much, much love and gratitude.

God night.