Sunday, May 26, 2013

This is the good stuff...

There's a country song I LOVE called "The Good Stuff," by Kenny Chesney. That song kept running through my head this weekend as I was watching the kids having a ball with my parents, and loving life at their local Strawberry Festival, which is an annual tradition for our family. 

Supposedly, the good stuff starts after the Fontan. But I'll be darned if we aren't sitting right smack dab in the middle of the good stuff right now...

Enjoying blue slurpees galore! 
(and yes, like a good heart mom, approximately 2 1/2 seconds after buying him the blue slurpee, I turned around and thought "Oh my gosh! Bodie is SOOOOO blue! What's wrong?!?" and then remembered " slurpee!")
Face painting to the max
(and Bodie actually stood still long enough to get the snake put on! WOW!) 
 Massive amounts of playing in Gigi and Popo's awesome backyard.
 LOTS of animal loving...
Hanging with (and feeding!) 2 HUGE tortoises at Steve and Dena's!
(thank you, Steve and Dena, for your amazing hospitality and entertaining our crazy kids all afternoon!)
Holding a chicken.
"Helping" dogsit my parents' neighbors dog, Mate.
 Swinging with Popo in the backyard.
Enjoying lots of snuggle time with Gigi and Popo.
Traveling the Strawberry Festival in style!
(more than one person looked at me oddly for wearing a 3-year old, but seriously, I had to do it for my own sanity - between navigating with a huge stroller or letting him run wild and losing him, wearing him was definitely my best option!)
Conquering new heights
(he worked so hard to climb this thing and pretty much shrugged off help from anybody - this kid is SO strong and independent!) 
 Getting a haircut
(yeah, yeah, peeps, I know - it was TIME. It sure is nice to see his cute little face again.)
Capping off our trip with a visit to the sand dunes.
(this is what I love about pics - the kids HATED it. Whined the entire 5 minutes we were there about how cold and windy it was...but you can't tell from the pics!)
As a side note, I LOVE my camera. Seriously, one of my best investments E.V.E.R. Oh, and it doesn't hurt to have some of the cutest subjects ever! 

Here's to lots more good stuff in the months comes summer!!!

Saturday, May 18, 2013

I will not be afraid.

So, I’m sure this will come as a total surprise (seriously, HOW have they not come up with a "sarcasm" font yet?), but I’ve been stressed. We’re not just talking have-a-lot-to-do-overwhelmed stress. We’re talking full blown oh-my-goodness-this-is-WAY-more-than-I-can-handle-I-am-literally-on-the-edge-of-the-cliff-just-waiting-for-you-to-unwittingly-say-the-wrong-thing-so-I-can-blame-you-for-everything-that’s-wrong-with-my-life stress. I’m sure it’s not coincidental that it started right around the time we got Bodie’s surgery date. As my best friend Val said “Amy, your anxiety is palpable.” And that’s from South Carolina, peeps. From clear across the country, she could see my SOS signals. You can imagine how fun it has been for the 3 lovelies who get stuck living under the same roof as me.

I haven’t handled my anxiety well.  To put it mildly. I went through about a week of just drifting, for lack of a better word. You know those, Cymbalta, I think they are (or maybe Paxil?), commercials where they say “Depression makes everything hard. You don’t feel like yourself anymore. You don’t enjoy your regular activities. Getting out of bed is hard. Depression hurts” (or something to that effect)? I would stare at the tv with my mouth hanging open, thinking “OH MY GOSH – THAT IS ME!!!” I’ve never dealt with depression, so it was definitely a weird feeling. 

And then my stress morphed into good old fashioned freaking out anxiety, which I am MUCH more familiar with, so that felt better because at least I was used to it. But it was still pretty bad. It was about the moment I found myself standing in my front doorway, sobbing and saying things no good Christian woman should ever be saying because I had dropped my fruit smoothie and the lid had popped off, spilling it all over my front entryway (somehow it did feel like the end of the world, I promise), that I realized I needed to get things under control.

I know peace from this kind of crippling anxiety can only come from ONE PLACE. A peace that truly surpasses all understanding. So I started focusing on the Word. And praying. All the time. I mean, in the shower, in the car, while I was making dinner, before I went to bed. And my prayers went something like “ok, God. This isn’t working. PLEASE take this from me. Let me turn this over to you. Otherwise, I won’t make it to July…without Paxil…or a lobotomy…or maybe both.”

And, like He always does, He answered. Luckily for me (and my poor family), He responded quickly.

First, my dear friend and fellow Christian heart mama, Christie, asked for my address and told me she was sending Bodie something. That “something” was a mix CD (I’ll let that ruminate for a minute – I did my share of mix tapes in the 80s and 90s – I didn’t even know you could do mix CD’s! Very cool!) of children’s worship songs. The kids and I eagerly put it in…and we didn’t recognize a single song. Here’s why that’s weird – those of us in the Evangelical Christian / nondenominational community are kind of cultish – we all sing the same praise songs. So to hear not just one, but an entire CD of praise songs that you’ve never heard before, is kind of unheard of.

At first, I wasn’t too excited, because I couldn’t sing along to the songs. But at the kids’ request, we kept listening. And within a few days, I found myself singing along to one song in particular – “I will not be afraid.” And the chorus started ruminating through my soul, lighting the dark spaces, filling me with comfort.

“I will not be afraid
I will not be afraid of the darkness
I will not be afraid
I am resting in You.

You are my Father, I’m your child
Here in Your arms I lie
Your angels are watching over me
Singing a lullaby”

(For the entire awesome song (by Phil Joel), click here.)

I realized that Bodie's upcoming Fontan was MY darkness, the scary place that robs me of peace, that keeps me awake at night, lying in fear. But I don’t need to be afraid because God is with me. He is my father and I am His child. What an incredible visual to think of him holding me and the angels singing lullabies around me! What glorious peace to know He has gone before me and comforts me.

I so love this song and will often just play it on repeat in the car on my way to work after having dropped the kids off at school/preschool. It's one that I want in my head, in my heart, in my soul, to remind me in my darker hours NOT to be afraid.

And then about a week later, I was working with Sierra on her AWANA Bible verses and we came across this verse.

“Have I not commanded you? Be strong and courageous.  Do not be afraid...for the Lord your God will be with you wherever you go.” – Joshua 1:9

I mean, seriously? OBVIOUSLY, Sierra’s sudden urge to do all of her AWANA verses at once and finish her book (as opposed to not caring at all, which was pretty much her approach this entire year) had nothing to do with her as much as it did about ME needing to hear this verse (which is at the end of the book), about ME needing to be reminded to be courageous, that God will be with me. Freaking awesome.

And then, thanks to God settling my heart so that I could think clearly, I came to a few realizations. Things that may be helpful to other families facing uncertainties.

1.     CHD has robbed our family of so much. Because of CHD I wasn’t able to breastfeed my son, I wasn’t able to hold him until he was 4 days old (and even then, only for a moment), his sister wasn’t able to experience the joy of having a newborn sibling in the home, our son has scars all over his sweet chest…The list goes on and on of what CHD has robbed us of. We had no say over that.  But THIS, this ability to wallow in the fear of what is to come, THIS I DO have control over. I can make the choice to let it control us, to force us into fear. Or I can choose to live freely, to enjoy the time I do have with my son. I can choose to NOT let CHD take ONE SINGLE THING MORE from my family. And so I will.

2.     The freaking scary as all get out truth is that we DON’T know what will happen this summer. For all we know, these may be our last moments with our son. We’re hopeful that won’t be the case, but we just don’t know. And if that is the case, the LAST thing we want is to know his last few months were spent in our mess of anxiety. We want to know our son ENJOYED his life and lived every minute of it – and that we lived it with him. And so we will.

So where does this leave me now? At peace. Honest to God, simple, happy, PEACE. Freedom to enjoy where we’re at now. And to let God worry about the future (like, you know, the fact that Bodie's cath was rescheduled to June 18th due to a sinus infection). Because, really, that is what life is all about. Casting aside our worries. Leaning on Him. Looking to Him. And knowing that He alone is the answer to all, the fulfillment of all. 



Friday, May 17, 2013

Comrades in arms: Our Fontanning Buddies

I suppose I could have titled this post "Misery loves company," which would be every bit as accurate. but I wanted to convey a message of hope and positivity, because truly, with these kiddos, there is SO much hope!!! 

I get told often how people can't believe how amazing Bodie looks, that you'd never know everything he's been through unless I told you. I LOVE hearing that comment. But you have to know, Bodie is not alone. Far from it. We have LOTS of friends just like Bodie, who have been through more in their little lives than most people go through in a lifetime, and you would never know it! Many of them I know solely through the wonders of social media; but a few, I've been lucky enough to meet in person! I wanted to share some of our special friends with you - all of whom either had their Fontan already in the past couple of months, or are gearing up for it now. (Their Fontan dates are indicated under their names.)

These are our buddies. 

They are Bodie's fellow heart warriors. 

Their mothers are my comrades-in-arms.  

And these kids are awesome. 

So, when you're saying a prayer for Bodie this summer, make sure to include these little heroes as well! 

Austin, 2
March 4th
Austin's family was one of our very first Sisters by Heart care package recipients! He ROCKED his Fontan and set the standard for the rest of us! Please pray that he keeps setting that gold standard for us!

Caleb, 3
March 17
Caleb's a lot like Bodie - pretty much always on the move, getting into trouble NONSTOP. And his awesome mom parents a lot like I do - she lets him get down, dirty and germy (and let me tell ya, in the heart world, you might as well wear a Scarlet 'A' for letting your kid get germy!). ;-) I'm so hoping Bodie will follow in Caleb's footsteps and recover quickly from his Fontan!

Brodyn, 2
April 22nd
This cutie struggled a lot with fluid and rhythm issues post-Fontan, and had to head back to the cath lab for intervention - but is finally home! Please pray with us that he STAYS home and keeps the fluid off!

Jasiu, 2
April 22nd 
I can still remember when Jasiu's mom, Kathy, reached out to Sisters by Heart right when she got Jasiu's diagnosis! She's an accountant (you know, my peeps) and from the midwest (you know, my parents' peeps), so we totally hit it off! It's been so fun to see how well Jasiu has done! But, he did hit a bit of a stumbling block with the Fontan. He, like Brodyn, has had some issues with fluid post-Fontan and was just discharged a second time and still trying to get rid of the extra fluid. Please pray that it stays away this time!

Evan, 2
May 21st
I haven't met Evan personally, but I have spent time with his awesome mommy, Natasha, who is one of our Sisters by Heart Board members! Please pray that Evan rocks his Fontan this week and is back home and off to Disneyworld (his favorite place in the whole world!) quickly!

Ella, 3
June 13th
This adorable girlie was born not just with HLHS, but also with an Intact Atrial Septum - a very rough combination - she was given only a 20% chance of survival! And just look at her now! She has been having issues lately with her oxygen levels, so she's definitely looking at a higher-risk Fontan and needs all the extra prayers you can send her way, for sure!

Jacob, 3
July 16th
Jake's amazing mommy, Kathy, and I "met" when we were still pregnant with our little miracle boys - and have been great friends ever since! Although they're clear on the other side of the country, I have gotten to spend time with Kathy more than once, and finally met Jake when I was in Cincinnati in January! In addition to his HLHS, Jake has some airway issues - please pray that they don't affect his Fontan!

Colin, 4
July 16th
Also on July 16th, but in a different part of the country, we have Colin - who is basically Bodie's toeheaded twin! Both with a huge propensity for living and living LARGE (who says 1/2 a heart has to slow you down? Not these kids) - and both with adoring older sisters who are going to have a tough time with them being inpatient this summer. Please pray both for Colin and his older sister!

Tyler, 3 1/2
July 17th
Tyler is one of our local buds and we love spending time with him! We're bummed our surgical stays won't coincide (since he'll also be at CHLA) - please pray that he flies through his Fontan and is outta there before we get there on the 29th! 

Other summer kiddos
all of these kids will have having their Fontans as well this summer, but don't have dates yet:

Avery, 3 1/2
I met Avery's amazing mama, Anne Dee, at the NPC-QIC conference in Cincinnati in January. She is an awesome advocate for our HLHSers. And isn't Avery adorable??? Pray for a smooth Fontan for this little girlie!

Derrick, 4
Meet my future son-in-law. You think I'm kidding. I'm not. I love this kid. ADORABLE. We had a chance to meet him when we were in South Carolina last summer. Pray for him to be in and out and back in his new pool in no time!

Emma Kate, 4 1/2
How gorgeous is this girlie?!? Even from clear across the other side of the country, I have been following her for, well, forever and have always been amazed at how well she has done. She has been a constant source of inspiration for Bodie and me! Please pray that she continues her awesome streak and flies through her Fontan with flying colors! 

Grace, 4
Spitfire Grace is one of our local buds and we get to see her often at different events (and yet somehow, this was the most recent pic I could find of the kids - go figure!). We love Grace and her whole family. Like Bodie, she has a history of pulmonary hypertension, so her Fontan could be interesting. Pray that her lungs LOVE the new circulation, please!

Zoe, 3
Meet my future daughter-in-law. Seriously. Zoe is awesome. Her mommy, Stacey, is one of my closest friends and has been an enormous support for me in my journey. Just like her mommy, Zoe is an overachiever to the max and I'm sure will set new Fontan standards! Pray for a quick and successful Fontan for her as well, please!

There you have it. Bodie and all of his buddies "Fontanning it" this summer! Please pray for them all! 

Wednesday, May 15, 2013

Hello, 40.

So, this is 40.
40 is hard. 

40 is realizing your body is slowing down, not  working quite as well as it did 10 years ago. 40 is an ICD placement and a hip replacement within 13 months of each other...with the other hip following close behind.

40 is reassessing career dreams, aspirations, realities. 40 is deciding where to spend the next 20 years of your life.

40 is a job that may not be your favorite, but has incredible benefits, which all of the sudden, are a lot more important than they were 10 years ago.

40 is never having enough time to meet all the demands of work and fatherhood.

40 is hard.

But, 40 is wonderful. It is the culmination of 39 years of laughing in doctor's faces when they said you'd never graduate from high school, never go to college, never be "anything," thanks to an umbilical cord finding its way around your neck at birth. It is a high school degree, a college degree, work on hit records and at a university. It is taking care of your family. 

It is a solid roof over our heads, and children running through the hallways. It is sweet faces smiling when you get home from work, excited to share the rest of your day with you. It is realizing that, at the end of the day, that is the most important thing. That is what will live on.

39 was a tough year for you, daddy. And we know the 40's are scary. But daddy, we believe great things are ahead for you in your 40's. We know it and we will shout it to the rooftops (or maybe just all over your car, since you enjoyed it so much when mommy wrote "It's my 40th birthday today" on your car in shaving cream today).

Happy Birthday, daddy. We love you. We know we're sometimes a tough bunch to hang with. We know sometimes we bring utter pandemonium on all parts of your life. Thanks for sticking with us, sticking it out. You rock.
Happy 40th birthday, daddy. Here's to 40 more.

Tuesday, May 7, 2013

The price of normalcy

This might be a tough post to read, so I'm apologizing in advance. But I don't shy away from the tough stuff, because truly, that's what life is all about, and I find that is where God shines through my writing the most. So, here goes...

We have worked very hard at allowing Bodie to live as normal of a life as possible in spite of his completely abnormal physiology. Of course, we couldn't do this at the beginning when he was inpatient for so long. But since then, I really think we've been successful with that. I would say we take pride in it, but really it has nothing to do with us, so much as it has to do with God blessing us with enough stability in Bodie's health that we're able to allow him this normalcy.

He goes to the nursery at church on Sundays and loves it. He comes with me to watch Sierra at gymnastics and runs around like a maniac, climbing the bleachers and screaming excitedly at the kids climbing the ropes (wish I could say everyone appreciates his excitement as much as we do, but, well, we all know that wouldn't be the truth. Ha!) He plays at the park, he goes bananas at the indoor play structures at McDonald's. He rides in the basket part of the shopping cart (and I don't sanitize it before putting him in - gasp!) He gets all up into germy stuff and we just say "ok, he's living his life." He once ate potato chips from between his toes (true story). (And ok, if I'm being completely honest, I cringe when he gets into the icky, sticky stuff since I don't do that too well - but he loves it, so we let him into it.) This kid has an insane zest for life and we don't shelter him from life - AT ALL. 

He goes to preschool 3 days a week all day and LOVES it. He is absolutely thriving there. Yesterday, when I dropped him off, there was a book in his folder with pictures and artwork from his past few months at the school. It included this picture. 

It just made my heart smile to see this picture. It honestly was everything I never dared to dream of when I was pregnant with him. He was just playing with his friends at school, goofing off, having a blast just like any other 3-year old at preschool. His teachers have welcomed him with open arms and let him just be a "normal" kid.

Herein lies the rub. Bodie thinks of himself as just a "normal" kid. He does know about his heart, but I'm pretty sure he thinks every kid has had multiple surgeries. This "normal" kid is now out of his beloved preschool and on quarantine from large groups of people (other than his Mother's Day Brunch at school this Friday) until May 22nd for his cath. And then he'll be going into the hospital where he'll have iv lines placed, be put under and have dye injected into his heart - and may have part of his heart cauterized (that's a fancy word for burned). And that's nothing compared to what is coming in July. 

And, as his parents, we have to explain this all to Bodie. And make him as ok with it as possible. And thank God for the resiliency of children. Let me say that again. Thank God for the resiliency of children

There is a part of me that feels like maybe if we sheltered him a little more, or allowed his heart to limit him a little more, all of this would be a little bit easier to prepare for, for him and for us. That, if he looked at himself as medically fragile, the medical procedures wouldn't come as much of a surprise. That part is small, but it is still there, nagging a little bit.

I don't regret anything we have done to allow him as much normalcy as possible and wouldn't have done this any other way. As long as his body will allow it, we will always allow him to live life to the fullest. But as with every decision we make as parents, our decision to let him life a "normal life" does come with consequences. This is one of them. 

We covet your prayers in the weeks and months ahead as we prepare Bodie, Sierra, and our entire family for this - and that we manage to maintain as much "normalcy" as possible. 

Thursday, May 2, 2013

Fontan: Step 1 down.

We had our consult today with the doctor who will be doing Bodie's pre-Fontan cath. 

I have to take a second to give huge props to his cath doctor, Dr. Badran. Not only is she personable (her bedside manner is incredible - she's thorough and patient, making sure the parent understands everything and is as comfortable as possible; and her care for her patients shines through in every conversation), but she comes with some awesome creds. She did her residency and fellowship at CHOP and worked at Mott's Children's Hospital (in Michigan) for some time. I love that she has such a wide depth of experience at how things are done at other top centers. If you're not a heart parent, the terms "CHOP" or "Mott's" might not mean much. But a heart parent can tell you that CHOP and Michigan are 2 of the top 3 programs in the country for treating Congenital Heart Defects (the remaining program is Boston, which is where Bodie's Electrophysiologist did his residency and fellowship - I am so grateful that CHLA is able to attract such talent). Credentials aren't everything, but to a parent who is routinely being asked to place their child into someone else's hands, they don't hurt. Not even a little bit. ;-) 

As far as the appointment itself, it went great. She went over everything to expect, the risks, etc. (Although, as she astutely pointed out, we're well versed in the risks of a cath (Bodie went into cardiac arrest during his first cath at 2 months old) and what the procedure will entail. We expect it to be outpatient (though with Bodie you never know) and there's a good chance Bodie may be cranky for a few days afterwards. 

For my heart mama followers, she is expecting to possibly find a collateral or two (maybe more), but won't necessarily coil them. She will only coil them if he is symptomatic as a result of them, they are large, or they are aortopulmonary in nature (as APC's can affect the post-operative course of a Fontan). But otherwise, she doesn't expect to necessarily coil (I do love that she doesn't jump to intervention if she really doesn't think it's necessary). 

She was pretty impressed with Bodie, who was very well behaved (thankfully) and happy to do puzzles on my iPhone! He, like usual, was having conversations with anyone and everyone and laughing away with daddy (it was awesome to have Dusk at this appointment, to ask questions and help me keep Bodie entertained!)
The only concern we have (I mean, beyond my generalized anxiety about all of this upcoming stuff) is that Bodie currently has a cold (actually a cold and double ear infection, if we're getting technical). She said he needs to be congestion free for 2 weeks prior to the cath. Apparently, if he has a cold, the process of intubation can spread the virus to the lungs, potentially causing pneumonia. So, we'll be pulling him out of school for the next 2 weeks (his cath is May 22nd) to try and keep him healthy (we really don't want to have to reschedule, since it was hard enough to find one date that worked with both Dr. Badran and Bodie's Electrophysiologist). 

Please pray we can keep Bodie HEALTHY (and find someone to help watch him for me for the next couple of weeks)! And please continue to pray that his cath goes well and we find out that he is indeed a Fontan candidate. 
Bodie, celebrating a good appointment with ice cream.