Sunday, May 27, 2012

Livin' it up

We received so many wonderful responses to my last post - thank you SO MUCH for being such a wonderful source of support to our family! We are so blessed to have so many faithful friends and family praying for us. :-) But I do want to make one thing clear. Lest you think we sit around dwelling on the uncertainty and unknowns, I assure you we DO NOT. Yes, the fear is always there, lingering at the back of our minds. But we make our very best efforts to push it away (and most of the time, we're successful, thankfully!) If nothing else, we want to make sure we've soaked in every moment we've been given with our kids, really, truly, living life. Case in point - we just got back from an awesome, and by awesome, I do mean AWESOME, amazing and exhausting, weekend with my parents. 
(sadly for us, this is Bodie's newest expression when you ask him to smile for pics...though I suppose it is better than his old standby, to dissolve into a torrential downpour of tears and throw a screaming fit)

 Does this look like a kid who doesn't live life? 
Yeah, I didn't think so either. ;-)

My dad took them both for rides in the golf cart. I just love the look they're exchanging here.

And we got to meet one of our other favorite heart warriors, Ella at the local Strawberry Festival! I'm not sure which I love more...

Bodie's look of utter excitement (he is OBSESSED with Ella!) 
(hey look - his favorite expression again)...
or her response to him. Clearly, she's thinking "this kid again? For real?!?"

The highlight of the trip for the kids by far was jumping in the bouncers at the Festival. 
Sierra, as always zipped around and over them like it was her job. She does so great on these things! She's a pretty coordinated kid, fairly astounding considering the contributors to her gene pool.

Bodie blew us away. Sierra wanted to go on this bouncer, which we knew Bodie wouldn't be able to climb up. It's huge, right? I mean, the almost 4-year girl in front of him had a hard time with it.
Well, we let Bodie go in anyway, figuring he'd play down near the bottom with the fake palm trees and stuff. Which he did...for a bit. But then he headed for that ladder. My dad and I were watching him (they didn't let adults go in, so he was completely on his own), thinking "there is NO way this kid is going to make it up that thing. It takes SO much upper body strength." We watched him, waiting for him to give up and fall back down. But wouldn't you know it, this little stubborn kid, with his whole half a heart, methodically and slowly climbed up every rung and step of that ladder. It was kinda like watching him rock climb. He'd reposition  himself on every step and look for the next step or rung, and reach for it, pulling himself up a little further. Until he finally made it to the top.
It took him almost the entire 5 minutes he was allotted in the bouncer (and luckily there were 2 ladders, so the other kids could go up the other side and didn't have to wait behind him), but let me tell you, he couldn't have possibly been prouder of himself to come whizzing down the other side. I don't know that I've ever been prouder, either, to be completely honest. The kid continues to amaze me daily with his strength and determination. (Oh, and you KNOW I'm printing out pictures of this to take to his Physical Therapist next week, in light of the recent report that showed him to be testing at 18 months for gross motor skills! Ha!)

Those of you who know our political leanings won't be surprised that, when given the choice to pick one toy at the Festival, they both picked "shoot guns, daddy!"

Thank you so much to my parents for hosting us for another awesome weekend! We love you Gigi and Popo and can't wait to do it again!!!

Friday, May 25, 2012

Anticipatory Grief

Yesterday, a relative of Dusk's forwarded me a link to an article in his local newspaper, about parents who had started a nonprofit foundation in memory of their daughter Lauren, who had passed away from a Congenital Heart Defect. He sent it to me, saying that although the article was tough to read, the family was trying to make some good out of something terrible and had started a foundation and it made him think of me. It meant a lot to me that he thought to send me the article.

I linked to the article and started reading. It took me just a few minutes to realize that this sweet little 3-year old girl had Hypoplastic Right Heart Syndrome (the opposite of Bodie - she only had the left side of her heart - different first surgery, same second and third surgeries, better outcomes generally as you're working with the stronger side of the heart) and that she had passed following her third surgery, the Fontan...the very same surgery Bodie is gearing up for. My heart literally stopped when I read that. It's not often that kids pass after the Fontan (most of the top surgical centers have survival rates between 95 and 99%). But it does happen. Typically the kids have other complicating factors, but not always.

I found the girl's Caring Bridge site...and was met with photos of the sweetest little 3-year old girl you could imagine, smiling up at the camera just like any other carefree 3-year old. I scoured her site, looking for complicating factors, things that would make her higher risk, that would explain why she passed in a way that would mean it couldn't happen to Bodie. (Not that complications make it any easier when it's your child who passes, but only that it makes it easier for me to distance myself.) I came up empty-handed. She wasn't complicated. Her Norwood went pretty smoothly and her Glenn went smoothly. She spent the time between her Glenn and Fontan living a pretty normal life, just like Bodie. She geared up for her Fontan, the pinnacle of the surgical route hypoplasts must take, the make-or-break it surgery, where the land of milk and honey lies on the other side, the land of "no anticipated interventions for the foreseeable future." Her surgeon and surgical center were top notch. Her parents sent her into her Fontan fully expecting her to recover well from that surgery as well. They had no reason not to.

Her Fontan went off without a hitch - the surgeon came out and told the family it had been a textbook Fontan. They saw their sweet girl transported into the Cardiac ICU, with the attending nurses and docs all saying how great she looked. Moments later, everything changed. They were called into a private room, with doctors and chaplains and told that something had happened. The mom actually said that no, she thought for sure they had the wrong family, that they had just seen their daughter and everything was fine.  But it was the right family, and their sweet girl had had an arrhythmia and gone into cardiac arrest. They had to re-open her chest, do chest compressions and place her on ECMO. She came off ECMO a couple of days later, but they had to let her go shortly after that. To be honest, the site doesn't give a lot of details, but I assume it was brain damage from the time spent doing CPR.

When I read stories like this, I literally cannot breathe. My chest tightens. My world starts spinning and I get nauseous. (Anxiety attack? Yes, please.) I run to hug Bodie, to cling tightly to him, begging God to "please let me keep my son. Please don't take him from me." It is impossible to explain the sheer amount of death and sadness around me all the time, being so deep into the heart community where warriors are turned into angels suddenly, unfairly, irreplaceably fast.  But reading stories like this, of a child doing so well and then, just, inexplicably gone, as a result of a surgery that Bodie still has to have makes it so.much.worse. It is every fear of mine wrapped up in a pretty little box with a nice shiny bow. Pretty fantastic, right?

I recently read a book written by a fellow heart mom about her journey with her son born with a complex heart condition. Although much of her experience was truthfully vastly different from my own, her discussion on anticipatory grief was dead on. Anticipatory grief refers to a grief reaction that occurs before an impending loss. The thing is, with heart moms, our loss isn't impending - it's hypothetical. It might happen. But it might not. Our kids might be gone tomorrow. Or they might live to be 100. But there is all kinds of grief wrapped up in just the thought that the loss might happen, that it is much more likely to happen with a child who has a congenital heart defect than a child with a healthy heart. But then I KNOW I should feel lucky that I still have Bodie and not let my mind get wrapped up in any grief - if it comes, it'll come soon enough. So then, I get to add a fun layer of guilt into the grief. It's truly impossible to explain to someone who hasn't walked this path. But trust me, to someone who has walked this path, it makes 100% perfect sense. You see sweet heart warriors become angels all the time around you. Why wouldn't/couldn't it happen to your child, to your family? 

So why am I writing this? I'm writing this to ask for understanding. For an understanding of the sort of mindset a heart mom finds herself in. For extra prayers for our family during this time period leading up to Bodie's Fontan. I know we still have a ways to go (probably another year or so, unless Bodie has other plans), but truthfully, I know I won't fully exhale until we're post-Fontan. So, if I'm a bit neurotic (you know, more than usual), a bit more emotional, a bit more tough to handle, please understand why. I think I'm pretty good at "letting go and letting God" and trusting that ultimately, HE is in control, not me - but, as a human, as a mom, I am daunted by the thought of another open-heart surgery. I am afraid that my son won't make it through this surgery, that my grief will turn from anticipatory grief to real, true grief. That, like Lauren's mom, I'll be left only with memories of my sweet toe-haired boy who once walked among us for far too short a time. And we have so many heart friends approaching their Fontans this summer that I get to live with this constant Fontan-reminder and the accompanying anxiety attacks.  So, yeah, if you have the time to spare, send some prayers up for our family - and all of our heart warrior friends. And especially, most especially, for this sweet little guy. Because I want a lot more moments like this in our future...


Thursday, May 24, 2012

Sweet Memories

We got back earlier this week from an amazing weekend vacation with Dusk's brother, his wife Missy and their sweet girls, Hannah and Amelia. The last time we saw them, the kids looked like this:

What a difference 16 months can make, right? 

Oh my goodness, we had SO MUCH FUN. The kids swam their little hearts out... 

(seriously, my kids must have been fishes in another life, because that's ALL they wanted to do - and these Puddle Jumpers were a HUGE lifesaver for us - they allowed Sierra to swim independently with Hannah and Amelia - and allowed me to not have to have my hand on Bodie every second he was in the pool. Before the Puddle Jumpers, Dusk and I would pretty much treat Bodie like a hot potato, constantly passing him back and forth because being on "Bodie duty" in the pool was so stressful, just waiting for him to injure himself/jump in the pool - neither one of us wanted to be on "Bodie duty." But with these awesome lifevests, we can actually sit next to him and watch him - and relax - a bit.)

And Sierra mostly did a lot of this - jumping into the pool and "swimming" from one end to the other. Clearly, her swimming lessons are paying off! Yay!
I just love this sweet pic of my beautiful sister-in-law with Amelia

...and we did A LOT of sleeping... 

(this was how they slept all weekend - Bodie is officially so.OVER.the pack and play, apparently. He was all about sleeping in the same bed as Sierra - and really, it was way toooo cute to resist - and she's way more amenable to his kicks and punches than we are. Saturday night, I walked in to find them both snoozing peacefully, her elbowing him and him spooning her butt. Seriously.)

...and we did A LOT of giggling with our cousins...
Bodie and Hannah, who doubles as an AMAZING babysitter!
Bodie and Amelia
Sierra and Amelia - SO fun to have a cousin just a few weeks younger than you!

And we just plain relaxed...
Seriously, HOW are these kids not biologically related to each other? They could be siblings, right?!? And Bodie LOVED Hannah (actually, both my kids were pretty obsessed with her - nothing like an amazing older cousin to adore, right???) - he went right to her and let her carry him around almost immediately, which is pretty much unheard of for him!

As always, when we have an opportunity to slow down and spend time with friends and family, I am reminded how lucky we are to share these moments with both of our children. When we started this journey with Bodie, we had no idea how many of these moments we would have with him. We still don't. We are reminded of that as our heart buddy Olivia (Bodie's age) recovers from the Fontan at a Children's Hospital in Chicago right now. We are minded of that as we read an article this morning about a 3 year-old little girl that passed away following her Fontan surgery. So, as my chest starts to tighten and I get nauseas thinking about the uncertain future our family has been given, I choose to focus on God, and celebrate each little moment. We had A LOT of moments to celebrate this weekend!

Wednesday, May 16, 2012

Oh What a Feeling...a Special Heart Encounter

Being a heart parent isn't always easy. But having close friends traveling the journey with you makes it so, so, so much easier. One of those special friends is Stacey, one of my fellow Sisters by Heart moms. Stacey and I have such a special close friendship. I feel so blessed to have her in my life. Stacey, her husband Caleb, and their girls, heart-healthy Emmy (4 years old) and HLHSer Zoe (2 years old) made the trek from Phoenix out to Southern California for their family vacation and we had the opportunity to meet up with them and another fellow Sister by Heart Nicole (mom to sweet angel Travis, who I've talked about before many times on the blog). What follows is Stacey's blog entry detailing the awesomeness. (To read more about the amazing Zoe, you can follow their family blog at


Oh, What a Feeling!

Now that you're all singing Lionel Ritchie, let me tell you how I was dancing on the ceiling last week during our vacation to San Diego.

In a last minute scramble to get together with some of my So-Cal heart sisters, we decided to meet for dinner.   After a long day at Legoland, seeing 'my ladies' was definitely a highlight to the trip.

Many of you know the story of Sisters by Heart, but I cannot emphasize enough what these moms/sisters mean to me.  They literally are a life-line nearly every day.  They get me - all of me.  That's not an easy accomplishment, by any means.

So, when I saw Amy in the parking lot getting her littles out of the car, Caleb had to hold me back because I nearly leapt out of the car while it was still moving.  I wanted to give her a hug RIGHT THEN!  Barely looking for cars, I ran across the parking lot for a big ol' heart sister hug.

We had some fun trying to get the kids to cooperate for a photo before dinner.  We weren't too successful...

All the while we're trying to snap photos, we had no idea Nicole was sitting inside waiting for us!  It was a great impromptu dinner (ok, well, seeing each other was great... dinner was nearly impossible with the four darlings causing a ruckus.)

During dinner, lord knows why, Sierra and Emmy decided to eat UNDER the table.  And, we let them... 

If you know Amy and I, you know that we were not leaving without some decent photos of Bodie and Zoe together.  No way, no how.  So, after some serious prodding, begging, bribery, and wrangling, we got a few great shots!!!

I'm worried that Bodie looks worried about Zoe's leading...

If there is nothing like a big ol' hug from your heart sisters, then there certainly isn't anything like a big ol' hug from a fellow heart warrior!

Zoe and Bodie's first pow-wow, May 2012


Sunday, May 6, 2012

Orrier mark

Today after nap, Bodie and I were snuggling. All of the sudden, he sat up, pointed down at one of his chest tube scars (which, by the way, look far worse than the chest incision scar, which has always kind of surprised me) and said "boo boo, mama. Boo boo."
 I had to catch my breath. My sweet little man. Of course I knew he'd notice someday. I guess I just didn't realize it'd be so soon. Thinking of one of the most important lessons I have to teach him, to be proud and not ashamed of what he's been through and what those scars represent, I gently corrected him and said "no boo boo, sweetheart. It's your warrior mark."
He looked up at me with a huge grin, eyes full of wonder and pronounced proudly "Orrier mark, mama." Yep, my little "orrier" indeed. 

Thursday, May 3, 2012

Sweet Beginnings

Tonight, I had an incredible opportunity. A privilege. A chance to witness the miracle of life, to hold my sweet niece, Nicole, at less than 24 hours old.
How beautiful is she? I mean really, look at her. :-)
In all of her sweet sugar and spice perfection, she slept in my arms almost the entire time I visited.

As always, when I see newborn babies, I feel a gentle pull. A soft voice reminding me of all we missed out on with Bodie, of all his heart defect robbed us of. Of how tough the second half of the pregnancy was, of how consumed with fear and worry I was, of how I couldn't even bring myself to have a baby shower. Of how, once he was born, I didn't get to see him for but a minute before they whisked him away to the NICU. Of how I didn't get to see him again for 24 hours, or hold him until he was 5 days old, and even that was only briefly. Of how we has 6 weeks old before coming home; 2 1/2 months old before we ever truly got to have "skin to skin" contact free of any tubes or wires. Of how we never got to nurse, thanks to his paralyzed vocal cord. Of how our "newborn" experience was anything but typical. 

HLHS has robbed us of so much.

But then, I think of my silly boy, who, right before I left tonight to go meet Nicole, was squealing excitedly about and pointing at "The moon, mama! The moon!!! The MOON!!!" and who wrapped his arms SO tightly around my neck, gave me a kiss and said "bye bye mama, I love you" when I  left. Of my little guy who clearly still views me as his long lost body part erroneously severed at birth. Of my sweet boy who asks me to "nuggle" (Bodie speak for "snuggle") before every nap and at bedtime.

And I realize it doesn't really matter. It doesn't matter the road we took to get here. That it wasn't a typical newborn path. It only matters that we're here. That we've made up for lost time. Praise God we've had that chance.

So, tonight (although, yes, I'll admit it I got teary eyed in seeing how very very pink Nicole's lips were, knowing I've never seen Bodie's lips that pink), I only left room in my heart to rejoice in Nicole's birth. And what a perfect little angel to rejoice over!
Happy Birthday, Nicole! Welcome to the world, sweet one!

Wednesday, May 2, 2012

The Running Man

So, while Bodie is mostly caught up developmentally, he still has a few areas his physical therapist is working on with him: 

(1) Going up and down stairs with no assistance. 
He's VERY close on this - does it some, but not all of the time yet.

(2) Not falling down so much. 
Yeah, good luck with that one. I keep trying to blame it on his genes, but his therapist isn't buying it - I don't know, I think she just doesn't appreciate how strong the Gerrish klutziness gene is. You'd think she'd get it, given that I had a broken foot when we met because, at 35, I fell flat on my face just walking across the street. Hmmm..Maybe I should introduce her to my mom, the one we blame for starting the whole klutzy gene. But I digress.

(3) Running. 
Up to this point, Bodie has mastered the lumbering speed walk. It's not that noticeable, because he does move very fast. But if you put him next to a typical kid his age (or heck, even younger), you can definitely see that he does not have the same ease of movement when he moves. And put him next to his younger cousin Michael, who literally prances effortlessly when he runs (it's SO cute) and he looks like a sumo wrestler lumbering along. It's pretty funny, actually. But his therapist has been working with him. How, I'm not exactly sure. I think mainly strengthening his core and increasing his confidence in letting go enough to run.

So, yesterday the kids and I were at McDonald's and the kids were standing together looking at the toy display while I was paying. I wasn't holding Bodie because I just threw my back out and while wearing  a brace helps me to do basic stuff like driving, walking and holding Bodie for short periods of time without being in excruciating pain, it doesn't allow me to hold him long at all. So, as I am handing my money to the cashier, I see Bodie saunter nonchalantly over to the door. I'm not thinking much of it since the doors are really heavy, and I'm thinking I have time to get my change back, put it in my wallet and then get him. But then I see him open the door and I realize (1) the kid is stronger than I give him credit for and (2) I'm in trouble.  So I head over toward him, calling him back to me.

The kid takes one look at me and RUNS outside. I mean, we're talking full out sprint. An, Oh My Gosh, I better run to keep up with him kinda sprint. We ended up in a race to see who could make it to the parking lot first. He won. Just as he was setting his foot off the curb and into the drive through lane, I swooped down and grabbed him. It's true what they say - adrenaline does kick in when you need it. I was totally able to sprint after him, thrown out back and all. But lemme tell ya, once the adrenaline was gone, my back was NOT happy with the effects of said sprint. ;-)

I'll be honest - I'm THRILLED that Bodie is running now. Praise God! But seriously, did he have to demonstrate it that way? Couldn't he have, I don't know, ran across our back yard?!? Oh wait, no, he's Bodie. That's right. This is how he rolls. Bodie style. Always has to call the shots.

Ah well, at least he rewarded me by eating 5, yes 5, chicken nuggets. Approximately 5 times his usual fare there. 
(And yes, I know McDonald's is gross and those 5 chicken nuggets will be sitting in his intestines in the exact same form in 2 years (yes, I've seen the Facebook video), but well, ya gotta choose your battles, and today I'm choosing to be happy that my little man RAN and ATE. Little blessings!)