Saturday, February 17, 2018

The force is strong with this one

Today, we celebrated this little dude turning 8.

Hard to believe we've been blessed with 8 years with this sweet, silly, stubborn little dude. 

We have too many friends who didn't get to 8. Or 7. Or 6...
In a community where CHD takes too many children every day, we know we are profoundly lucky to still have this little guy with us, enriching our lives every day with his silly sense of humor and love of life. 
So here's the thing. 
When you've had 5 heart surgeries and are dancing around a transplant, birthdays are a huge freaking deal. And you go all out. So when Bodie asked for a Star Wars birthday party, with a Death Star pinata and a Death Star cake, of course I said yes.  

What I should have said was "um, how about a Lego party instead? Where everything is square shaped with nice even edges?" But I digress.

A Star Wars party he wanted. 
So a Star Wars party he got. 

Complete with a DIY Death Star pinata. 
I forgot to get a picture beforehand, but one mom did get this cool pic of the exact moment the candy started spilling out. 
And hey, it actually looks like the Death Star now.

And a Death Star Cake.
The cake that almost did me in. 
There were tears. 
So many tears.
All mine. 
All at midnight the night before the party. 
Dusk even offered to pick up a sheet cake when he grabbed the pizzas for the party. 
Which made me cry even harder.

But I managed to pull it off and it was such a hit. 
The cake was on top of a platform of rice krispy treats (also a huge hit), complete with an army of Storm Trooper cupcakes. (My first attempt with both a rice krispy treat cake layer and fondant.) 

And all sorts of fun themed foods.
"Yoda Soda" - green party punch
Obi Wan Popcorn Kanobi
"Sith sticks"
Oh, and "Vader Veggies" with "Droid Dip"

But the highlight of the party by far was this man. 
We have the most amazing neighbor who just happens to be Luke Skywalker. 
I know, right??? What are the odds?

He pulled up in his tricked out R2D2 car, and you could hear the kids squealing from a block away, I swear. 

And he gave the the most amazing Jedi training. The kids (not to mention the adults!) were enraptured by his knowledge and teaching. Each of the kids got to fight with him twice and the kids loved EVERY SECOND. 
(Yes, that's Sierra - and yes, she's grown a foot since the beginning of the year - and yes, she's in the most adorable Darth Vader dress ever!)

We were blown away and I know the kids were as well (by the training, not Sierra's dress - although the dress was cute!)

All of the kiddos got to take home training badges, pool noodle light sabers and official Jedi certificates. 

When all was said and done, Bodie told me it was the best birthday party ever. 

And if any kid deserves the best birthday party ever, it's this guy.
Ok, well, not that guy, but the one in that guy's costume
The adorable little blondie underneath that really bad dude's costume. 
(B is obsessed with Darth Vader and insisted on the costume, complete with the voice changing helmet. But then, he eagerly destroyed the Death Star Pinata and ate the Death Star cake - so he basically destroyed his home. So yeah. not quite sure what to do with that one.)  

But this guy, yep, he deserves the world. 
And I'll welcome any birthday party I can make so epic that this dude has to take a break from the fun. 

Saturday, January 27, 2018

Is it worth it?

Last week., I was connected with an expectant mom. A sweet mom who had just received an HLHS diagnosis and was planning on terminating. I shared Bodie’s story with her and the experiences of other kids with HLHS, of how much hope there is with this diagnosis. I was so hopeful she would change her mind. She didn’t say she would change her mind; I think she was just making sure she had a complete picture of what an HLHS diagnosis looks like so that she could make an informed decision. Nevertheless, I was so hopeful. 

After talking with one of the best programs for treating HLHS in the country and doing further research, she still chose to terminate. I understand objectively why she made the decision she did. This journey is not for everyone. It is hard. Especially if you have other children in the home. I get it. 

Even so, I was crushed. It was so hard to look at my amazing little boy and realize that even seeing him, it’s still not enough. He is not enough. How it grips my heart to realize that someday he will realize that people choose to terminate pregnancies solely based on the heart defect he has. That people look at the life he leads and say “He’s amazing…but yeah, no thanks…”

I don’t begrudge this mom. I understand why she made the decision she did. But it hit me at the core. 

So, to say I was wrestling with all the feelings going into this week pretty much sums it up. 

And then this week happened. 

In the span of just a little over 48 hours, we lost 2 amazing HLHSers. 

Oh, sweet Kate. Kate was a spunky, sweet 5 ½ year old who had fought through unbelievable odds just to be here. She had survived brain injuries and seizures on top of her heart condition. And yet, still. Her smile. Her laughter. It was everything.  She was obsessed with Minnie Mouse and had just gone on her Make a Wish trip to Disneyworld last week. In a world of bravehearts, she set the bar. And her mom, Erica is amazing. She is one of our Board members at Sisters by Heart and is a close friend of mine. She is tenacious and fought to get Kate everything she needed to live a full life. And, like me, seriously uses humor to get through stuff. So, clearly, Erica is my peeps. Kate left behind Erica, her father and 2 sweet brothers, trying to understand how she was perfectly fine one day and inexplicably gone the next. And how they move forward without her. My heart is shattered for them. 

And Will.
Man, this kid. This 7 year old’s spirit was indomitable. Like Bodie, he was born with HLHS and didn’t get too far before he needed a heart transplant. He had a really rough road to getting that transplant, but he got it in the nick of time. He battled back and finally made it out of the hospital right before Christmas, only to come back after Christmas with what ended up being tumors in his body. He passed away from complications from those tumors. Yes a complex medical kid. Yes a kid who was in the hospital for almost an entire year. But a kid who inspired thousands with his smile and his love of football. A kid who, at the end of the day, was just a boy who wanted to play with trucks and cheer on his football team. My heart is broken for his parents, Chris and Meghan, who were by his side every single day of that journey to transplant, who never stopped believing, who never stopped fighting, who never stopped hoping.  

My heart is in pieces right now. This CHD journey is so so hard. And in the wake of these enormous losses (not to mention the countless others I hear of every week), I thought back to that expectant mom and wondered “Was this what she was trying to avoid? This pain. This overwhelming sadness. The loss of children you have come to love like they were your own. The neverending anxiety and fear surrounding your own child’s future. The grief and agony I am seeing on my friends’ faces this week. Was she right to say no to all of this?” 

I have been mulling this question in my head and my heart. 
Is it better to just walk away before you’re invested? 
Is this, all of the pain and uncertainty, worth it? 

And here is the conclusion I reached. 

There is so much pain in this journey. So much fear. Overwhelming, gripping anxiety. 

But just like the break-up doesn’t define a relationship for its entirety, and constantly refereeing fights between siblings doesn’t define their relationship nor your love for them, the pain and the fear don’t define the CHD journey. What defines it is the resilience and spirit of individuals born with CHD. The lessons they have to tell us. It’s unlike anything I had ever known before my son was born. It’s so hard to explain, but people with CHD have this amazing spirit and fight to live and to experience life. 

If it wasn’t worth it, Kate could never have taught me that brain injuries don’t have to be the end of your story.

If it wasn’t worth it, Will could never have taught me that a kid doesn’t need every toy on the planet to be happy, just to get to watch football with mom and dad. That a kid can smile despite everything and that we as adults could really take some notes.

If it wasn’t worth it, Brenda and Jake and Jenni and Kenny (and the other adult CHDers I know) could never have taught me that your diagnosis does not define you. It is a part of you, yes, but it does NOT get to define you. 

If it wasn’t worth it, I wouldn’t have joined the bravest tribe I know, my heart moms. Some days there’s the only reason I can keep my head up. They get it. 

If it wasn’t worth it, I wouldn’t get to witness miracles on the regular.

If it wasn’t worth it, my daughter wouldn’t get a front row seat to learning about compassion and celebrating our differences. 

If it wasn’t worth it, I wouldn’t be given the gift of constantly being reminded that life is short, that kids grow fast, that they only get one childhood and we’re privileged to get spend it with them. That there’s no such thing as too many hugs and too many kisses goodnight. 

Do I wish my son had a perfect heart? 
Absolutely 100,000%. 
(Or as my kids say, "google %" - I guess that means the highest number you can think of?)

But if you ask me, with everything I know now, is it worth it? 

Hell yes it is worth it. 


Wednesday, January 17, 2018

So there was this cow...

Dusk spent some of his formative years on a ranch outside of Reno, in Yerington, Nevada. This year, while in Reno for Christmas, we spent a little time on that ranch. While there, we came across this beauty.
A dead cow.
A reallllllly dead cow.
Which Bodie was endlessly fascinated with.
Which prompted a 30 minute negotiation whereby Bodie tried to pin down under exactly which circumstances I would have allowed us to bring said dead cow home with us. What if we knew it didn't die of any disease? And if we had rope to tie it on top of the car? And we had enough people to help us lift it onto the top of the car? And if we had a bigger shed at home to put it in? 

Right. Because there would ever be a circumstance where my answer would be "Sure, I'd love to bring a dead cow home with us from Christmas vacation."

But if you know Bodie, you know he has a tendency to hold on to things (with every ounce of his being and then some). So the conversation really did last 30 minutes, before my father in law finally says " you know where Dusk went?" And disappeared. He, apparently, had better things to do than continue a dead end negotiation with a 7-year old who won't take no for answer. Bodie, luckily for me, did not. Almost a month later and we are still talking about the dead cow. I kid you not. He actually shared the pictures in class today. You're welcome to the parents of his classmates, who I'm sure are scarred by the pictures.

Oh, and also, we did a lot of other cool stuff while in Reno.
We hiked and explored under a breathtaking Nevada sky.
 We goofed off with Popo Alan (and Grandma Jan, but somehow didn't manage to get a pic of it!)
We sledded. 
And by "we," I mean Dusk and Sierra sledded. 
Bodie did one run, got ice in his glove and lost his marbles. Hyperventilated all the way back to the car about how cold he was and stayed in this position for a good 10 minutes while his hands warmed up. 
Overly dramatic, yes. But also, it appears the heart failure is not doing him any favors in trying to keep his body warm, particularly his extremities, at altitude. Poor kiddo. 

We went to church.
We also painted! We did a DIY Paint Nite and had a blast.. Here were our final products. 

However, in spite of the cool stuff, I fear this will forever after be the vacation "where mom wouldn't let Bodie bring home the dead cow."

Thursday, November 16, 2017

Grateful Hearts

A year ago, our little dude was SO sick. We wouldn't know for a few more weeks just how sick his heart was, but we knew from how he was acting that it wasn't good. 
At all.

A year later, his heart honestly isn't much better. 
But we have him on a darn good cocktail of meds, so that his heart isn't so mad that it's sick anymore. I like to think his heart is kind of like "meh, whatevs. I know I'm pretty messed up right now, but hey, aren't we all?  I'm just gonna go with the flow here."  
Which means we're in a sort of weird limbo, where we know his heart is only going to get sicker, we just don't know when.

But we do know today isn't that day.
And for that, we are profoundly grateful.

Today he had appointments with both cardiology and electrophysiology, and everything was almost the exact same as it was in August, except that he's gained 2 more pounds (Hallelujah - maybe he won't really grow up to be 6'4" and 47 pounds as a fully grown man)! Even his BNP (already down to a normal range) was only 1 point off of where it was in August. 

When you're waiting for a heart to fail, "things look the same" is kind of like winning an Oscar.  
(Well, actually, it's probably more like an Emmy (maybe the technical one that doesn't get shown during the televised awards show?) - you really want the Oscar, but if you can't get one, you'll take this freaking awesome Emmy and party like a rockstar at the after parties. The Oscar would be "Surprise! His heart has healed itself!" But I digress...)

At any rate, we get a 3 month pass before we go back and do the same hold-our-breath-cross-everything-and-pray-really-hard song and dance all over again. 

And in those 3 months, we get to celebrate Thanksgiving and Christmas, and get ready for Bodie's 8th birthday!

I'd say that's about the best kick off to the holiday season we could ask for.  

I know this kid is excited. 
He could hardly contain himself in the CHLA garden today, which has been decked out for the holidays. 

And in almost this exact same spot, one year ago.
What's crazy is to compare these two pictures side by side. 
Everything about these two pictures brings tears to my eyes.
He was so, so sick. 
You can just see in his eyes, and in how he's standing, how tired he was. 
But this year, he just seems lighter somehow. 

This mama is so, so grateful right now, for this boy, and this hospital, and a God who always has His hand on this boy. 

This year, heading into Thanksgiving, we are especially thankful for this one.
Because The Force...
it is strong with this one.
So very, very strong. 

Grateful hearts indeed.