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! 

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.

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. 

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. 

How you lead, I will follow

So, I love when God moves in our lives, making little exclamation points as He does. Moments where he has tried to whisper something to you, but you've totally ignored it, so he's been forced to take more drastic measures, whacking you upside the head with a 2x4 and knocking you out. When you come to, you're left wondering "how the HECK did I not see that coming???" I had one of the those moments this weekend - 2 of them, actually. Both with the same point. How cool is that?

Lesson #1: Bad behavior begets bad behavior

On Saturday morning, we were doing last minute prep for Sierra's birthday party. (Our big awesome 6-year old, by the way, grew 4 inches in the last year and is now 95% for height and 75% for weight!!! She will SO thank me for these genes someday, although not until she's well past Jr. High I imagine.) 

Anyway, party planning stresses me out. A lot. I mean, A LOT. It kinda turns me into a crazy angry woman really quickly. It just brings out my worst triggers for anxiety - being late and overscheduled, which, no matter how much planning I do ahead of time, always describes me the morning of parties. I am notoriously super snippy to anyone who tries to help me. My parents, in fact, have made it a point to try and come right before the party starts (as opposed to coming earlier to help) because they don't want to get yelled at. Sad, but totally true. Dusk, unfortunately, on account of actually living with me, does not have the same luxury. He's kinda stuck here, dealing with me. And, given that my Fontan anxiety is already off the charts and I had a pretty stressful week last week anyway, you can imagine that I was not pretty Saturday morning. I believe it may have been around the time I was yelling at Dusk because I couldn't put the stupid castle together (you know, the one that claimed it was "easy to assemble"- I'd like to meet the person who thinks this castle was "easy") that he turned to me and may or may not have said the following:

"Hey, I have some Ativan left over from my surgery. I'm not telling you that you should or shouldn't take it; I'm just saying it's up there in the cabinet."

Like I said, he may or may not have said it. But in any case, you get the picture. It wasn't pretty. I KNOW that this is my thing, my Achilles heel, that I have to get under control. And truthfully, it had gotten better a few years ago. When I recognize my triggers (overscheduling, lack of sleep, stress in other areas of my life), I can manage them and work on it. But my anxiety has just been in such overdrive lately that I'm having a hard time controlling much of anything, particularly this embarrassing aspect of my personality. 

Fast forward to this afternoon, I'm trying to get Sierra out the door to go grocery shopping with me, and she literally starts screaming at me (in a not very nice tone, I might add) to wait for her and that I'm NOT ALLOWED to leave without her. Dusk just looked at me and said "gee, I wonder where she gets that from." I felt so convicted. I know kids learn what they observe in their parents and in their homes. Truthfully, I'm not certain where I learned it from since neither one of my parents are irrational screamers (though word is that I may have come by it genetically further up the line of grandparents). But there is NO doubt that Sierra is learning it from watching me. 

Lesson #2: Good behavior begets good behavior

Today, I had an awesome opportunity to do a Mother's Day photo shoot with an incredible photographer, Brenda. I had a friend in from out of town and was telling her all about it and asked when she last did professional pictures with her kids. She looked at me like I was crazy and said she never had. Let me tell you about my friend - she is AWESOME. She is this incredible Godly Christian woman, working her butt off as a single mom. I think single moms are the most under-appreciated people on the planet and Kelly is one of the most amazing moms, single or married, that I have ever met. 

It took me all of 2 seconds to offer my session to her and let the photographer know that I was gifting my session to Kelly. What was stunning to me is that both Kelly and the photographer seemed amazed that I would have done such a thing. It was such a no-brainer to me. It ended up not working out for Kelly and we ended up keeping the session after all, but the whole thing really got me thinking. Why does giving to others come naturally to some people and not to others? (By the way, I don't mean to imply that either Brenda or Kelly are not giving people; I have no doubt either of them would have done the same in my shoes - but the fact that they were surprised tells you how many people we all encounter every day who aren't giving by nature.)

And it made me think about the example my parents set for my brother and me growing up. I feel incredibly lucky that my parents have always been civically minded. Now don't get me wrong - my parents weren't perfect. As I tell my father when he questions how I discipline my kids now, "you had your chance to screw up a generation. This is mine." 

But, in terms of service, my parents were spot on in the example they set. From a very young age, I can remember my dad serving on the Chamber of Commerce, and in Rotary and later, founding and serving in Men's Club; all along the way, he was always working booths at carnivals, selling tri-tip dinners and helping out wherever he was needed. Similarly, my mom was always in AAUW, she taught Sunday school, she was on the Advisory Board for Kappa Alpha Theta up at Cal Poly. And both of my parents chaperoned numerous events when I was in high school. I never really thought about it; seeking out ways to give back to others was just a fabric of our family.

So, as an adult, I have always taught Sunday school, participated in charity walks, did work days at church, and generally sought out ways to help others. And choosing to specialize in nonprofit accounting and my work with Sisters by Heart have all been a part of that spirit. The spirit of giving just comes second nature to me, I suppose. Utilizing opportunities to show Christ's love to others is just what it's all about. And I think my brother would whole-heartedly agree. As an adult, he, too focuses on serving others where he is able to. What an awesome legacy my parents will have left us both in instilling in us an understanding that we are here to serve one another.

Lesson #3: Which Behavior Will You Lead With?

In having both of these "aha" moments this weekend, I could really sense God stirring my heart to think about the legacy I am leaving my children. Am I modeling a crazy neurotic overscheduling freakazoid who takes out her anxiety on those closest to her...or a genuinely good mom who seeks out opportunities to give to others? I sure hope it's the latter.  What a great reminder to me, in all of the ways I live my life, to remember that my kids are watching, and learning, and modeling their lives after me. My greatest prayer is that I am found worthy of that incredible calling. 

So this is SIX

Our sweet Sierra,

6 years ago today, you came tumbling out (well, we evicted and forced you out if we're getting technical) and opened our hearts, our world, to the possibility of loving someone with wild abandon, of falling so completely head over heels in love with another human being that life before would forever after be a memory. Thank you for changing our lives forever. We love you more than we could possibly express in words.

At the tender age of 6, you're still our baby girl. You still begin (well, mostly - you're pretty much  a grump first thing in the morning, but once you're awake) and end the day with hugs and kisses from mommy and daddy. You still wander into our bed almost every night. And we wouldn't have it any other way, for we know these nights will be gone in the blink of an eye. 

You still have all of your baby teeth and are so unhappy about that fact. You ask me on almost a daily basis whether your teeth are loose yet and how soon the tooth fairy will come. Soon, my sweet girl. I keep telling you not to rush it, that it'll happen. But I know that's a lesson you'll have to learn on your own. Many times over.

Your best friends at school are Anna and Frida. 

You girls are so sweet together, but are already navigating the difficult world of female friendships, the competitions and jealousy. I wish you could hold onto your baby innocence a little longer, that your friendships would always be easy and free. But I am so grateful you have Anna and Frida to learn these lessons with, girls that won't hold grudges, that will love you even when you're bossy and always have to go first in jumprope.

Speaking of jumprope, you freaking LOVE jumprope. You are obsessed with it. And you can almost actually do it. You're so proud of how close you are and I know you'll get the hang of it soon.

And you LOVE gymnastics. Man do you love it. And I love watching you grin from ear to ear the entire class. I just don't have the heart to tell you that, with a dad who is 6'3" and a mom who is 5'10," you have about 5 more seconds before you're too big to consider gymnastics as a sport you can actually do. 

At 6, you're getting more and more confident in your swimming abilities, and can get all the way across Gigi and Popo's pool, even if you don't quite have the proper stroke down. You're SO excited to start swim lessons again this summer.

And just this week, you got your first sunburn. A rite of passage for my generation, I'm pretty sure it's a mom-fail for yours. Sorry about that. But I'm pretty proud you made it all the way to 6 before you got your first one. You  are blessed kiddo with skin that almost never burns! 

You're FINALLY nighttime potty trained! YAY!

Your favorite colors are pink, purple, red, blue, black and brown. Apparently, you love them all, which I didn't realize until I asked you in anticipation of this blogpost. And while you're still working on the whole learning to read thing (and giving us a fair amount of attitude about it), you got your math down. I love seeing how naturally math comes to you - definitely my kiddo!

At 6, you're just starting to realize that jewelry can make an outfit, and asking to wear my perfume. We're dangerously close to the days where you start to tie your beauty to those things. As your mommy, I so hope I can help you see your beauty isn't in any of that, but in being a child of God.  When I asked you what your favorite song was, you said it was the AWANA theme song. I love that you're drawn to songs about your Savior. I love that you want to learn about Him, about His unending love for you.

So, this is 6. We are so excited for this next year of life, for the surprises that lie ahead for you. Because truly, sweet baby, your future is wide open. 

We love you and are so happy to be your parents.

Happy Birthday!

Love,

Mommy & Daddy

The night that (almost) changed everything

3 years ago today, we almost lost Bodie. He came back from a cardiac catheterization completely unstable. His medical team fought tooth and nail all day to try and stabilize him. They would get him stable and then, within an hour, something would change, the balance would tip and they'd be racing against the clock to stabilize him again. It was a horrifically frightening day.

Around 9pm that night, code meds were placed by his bedside with anticipation that he could likely go into cardiac arrest before the night was through. We were advised to have family come, because he was so unstable we simply had no guarantees.

And then...then, the attending, an angel of a doctor who had just come on, suggested externally pacing Bodie. It was her hail Mary moment. And it was the moment that changed everything for Bodie. 

We are grateful, every single day, for that doctor, who woke up on April 20, 2010 and prayed that God would guide her decisions, that He would direct her and give her the wisdom to treat incredibly fragile patients. It was that prayer that saved our 2-month old son's life. Because there is no doubt that a miracle took place in that room.

So I could think of no better day, than on the 3-year anniversary of that night, to post a picture of Bodie with that attending doctor, Dr. Rivero, taken when we were up at CHLA two weeks ago. 

Thank you, Dr. Rivero, for listening to the nudge of God that night and giving us our son. 

We are unspeakably grateful.

Everyone needs a friend like Valerie...

So, I have this friend named Valerie. 

And I'm about to embarrass the bajeezus out of her. 

But, when you're amazing like she is, you have to know people will notice.

Valerie and I have known one another about 5 and 1/2 years. We met when our little baby girls were in the same daycare class together. I remember the night I met her, at Back to School Night (in true Bennett fashion, we hadn't realized you are expected to leave the kids at home and we were the only ones in the entire nursery class who had brought their kid along. Oops). But I digress. I remember thinking she was super cool, that were I not so sleep deprived and actually thinking straight, I'd want to be friends with her EVEN IF our kids weren't in the picture. But, as life happens, we didn't really connect other than to say hi, and to continue to say hi and make small talk at drop off or pick up for months thereafter.

About a year and a half later, as the girls transitioned to the next class up, we somehow happened to discover that they lived down the street from us - as in, 10 houses away down the street. Oh, and by then our girls were totally best friends. And Valerie and I were slightly less sleep deprived and decided to start doing some playdates together. And, as fate would have it God planned it, Valerie turned out to be my best friend as well.

Val, her husband Rik and their sweet Sofia were absolutely Heaven sent to us. The girls played together, Val and I walked together in the mornings, we cried together and we laughed through the crappy stuff life had started throwing at the both of us by then. We shared our deep abiding faith in God and love of Jesus as a roadmap for our lives.

Val really is like me, but in a different body. Except that she's not OCD. At.all. And she makes fun of me for not liking sand. Or dirt. Or anything icky, sticky or gross. AT ALL. (Seriously, we totally got each other's kids - Fia like me, likes order in her universe and can't stand to be dirty (holla girl - I so got your back on that one!); Sierra and Bodie, like Val, are both free spirits who are magnetically attracted to dirt. I love God's sense of humor!)

Oh, and Val is super flexible. As in, did the splits on my kitchen floor at the tender age of 39. On purpose. (We won't talk about the muscle she pulled doing it. True story.) On the other hand, I have spent months in physical therapy because I can't be bothered to spend 2 minutes after a run stretching. I once had a physical therapist tell me he didn't understand how I could possibly still be walking around with as tight as all my muscles were. Also a true story.

But other than those 2 differences, Val and I really are so similar and I am SO grateful for her friendship. She has been an incredible friend to me. The first time Bodie came home from the hospital, she and Rik willingly grabbed Sierra at the last minute and let her stay there while Dusk and I got Bodie. And they took Sierra 1,000 other times when Bodie was so critical we were having to run to the doctor, to the hospital, etc. She was the very first person (besides my mom) I let watch Bodie when Dusk and I went on a date (ok, maybe not a date - I honestly don't remember where we went. But it was somewhere we couldn't take the kids and she watched the kids. It was probably a CPR class or something equally exciting.) And when they moved all the way across the country (yes I am still bitter), Bodie went on his first airplane ride this past summer so that Sierra could see Sofia and I could see Valerie. You get the picture. SHE IS AMAZING.

But what she will be doing for us this summer truly tops everything amazing thing she has done yet.

She is flying out here. All the way from South Carolina. To be here for Bodie's Fontan. Seriously. She is leaving her husband, her daughter, her family to help ours. She is putting her life on hold to be out here during our time of crisis. She didn't even give me a choice. She just said "I'm coming. Give me the date." I don't have family close that can help us. That can comfort Sierra. That can be there for me (which may be the hardest role in all of this!). That can sit by our side. That can put her arms around me when my fear takes over. That can gently and lovingly remind me that I am a CHILD OF GOD first and foremost, and a mother second. Who can remind me of my place in the universe. Who gets our family dynamic and steps right in. Oh and who loves the crap out of my kids.

Valerie is our family. And the gift she is giving us to be here with us is more than I can ever thank her for, more than I can even describe into words.

Like I said, everyone needs a friend like Valerie. 

Just don't take mine.  

At least not until after July.

I tried to find a picture of Val and I together, but I honestly couldn't. I think we're always behind the camera. But Fia is basically a mini-Val and Sierra is basically a mini-me, so I just grabbed a pic of the girls and edited it to look like it was from the 70's. Picture these 2 girlies in about 30(ish) years and you'll get me and Val. ;-)

Reasons why Bodie is crying

So...if you're on social media at all, you may have seen this being posted around the past few days or so - Reasons My Son is Crying. I even had someone send the link to me, saying it made them think of me. I looked at it and realized - hey, that's my life! I realized, after my blog post earlier this week, you all know why I am crying - without further adieu, here is why Bodie is crying (well, today anyway)...

Because I won't let him put this newly acquired (read: found in a gutter) baseball in his mouth.

Because I won't let him bring our huge trash cans in...all by himself.

Because he wants to unstrap his carseat...all by himself.

Because he cannot in fact unstrap said carseat...all by himself.

Because his headband is too tight.

Because he took said headband off and he can't figure out how to put it back on.

Because he has to wear underwear at the dinner table.

(well, actually, because he has to wear underwear EVER)

Because I won't allow him to wipe his face...with a Clorox wipe.

Because no, he cannot bite his sister just because she took his toy away from him.

 

Because...well...apparently...

 ...life is just plan tough when you're Bodie.

All of these pics (with the exception of the last 2) were taken in the last 36 hours. Yep, a snippet in my life. What can I say? This kid wears his little heart on his sleeve...and every other piece of clothing, apparently. Whether it's deliriously happy or crazy pissed off, you always know where you stand with this kid. 

(And lest you accuse me of being a mean mom and making my son cry just to take a picture, I assure you, every one of these crying sessions was completely brought on by Bodie - I just happened to have my camera handy.) 

Strength in my weakness

I'm really good at "being fine," at being strong, at staying positive. And I think the blog generally reflects that. 

But this isn't a fine post, a strong post, a positive post. This is a post about being a mom, about facing the unthinkably scary unknown with a medically fragile child. Because today, I don't feel strong. And, if I'm being really, truly honest, there's nothing fine, strong or positive about sending your child into open-heart surgery. Sure, God willing, Bodie will emerge stronger, better. But there's this big huge horrible obstacle between now and stronger, better. And, try as I might, I just can't get fine or even remotely ok with it.

Last night, Bodie and I were reading Zip-Line for the 100th time (a cute kid's book written about open-heart surgery - if that's not an oxymoron, I don't know what is - suffice it to say, being a heart parent changes your perspective, I suppose). Anyway, we got to the page where she comes back from surgery with lots of tubes and wires. After getting all excited about "2 pulse oxes, mommy!!!," Bodie said this to me - 

"mommy, I don't like the tubes and wires. They hurt. But you'll give me my binkie. And that it'll be over really fast and it'll be ok!" 

And I literally had to turn my head away from him so that he wouldn't see me crying. And all I could think was why do we have to put him through this again? and how am I going to explain it to him?  (although we have always referred generally to this surgery (and Sierra openly talks about it being this summer), we haven't gotten into any specifics with Bodie yet - everything I had read says to wait until about a week before so that he doesn't get too anxious). It is hard to explain how much it hurts my heart as a parent to know we'll be putting him through unthinkable pain and it won't be overwith fast and there won't be anything I can do but be by his side and try and love him through it. Mommies are supposed to make everything better and I won't be able to. It's just not fair.

But that's not what scares me the most. I know we can get through that part together. No matter how bad that part is, once we're home, we'll work through it and life will eventually return to normal. As long as we have us, as long as, at the end of the day, Dusk and I have our little boy, our little silly sweet boy, we can get through anything. It's the fear that, at the end of the day, we might not have that when this surgery is said and done. I don't voice that concern very often, because, let's face it, it's hard enough to even let my mind go there, let alone voice the concern.

But that's where my mind is at. This journey is so tough and I honestly wouldn't wish this part on anyone. THANK GOD the whole journey isn't like this, that Bodie's journey has been amazing thus far and the incredibly good moments have so far outweighed the bad I can't even tell you. But, this is where my heart is at right now, and I imagine it will continue to bounce back and forth between peace and this dark place between now and mid-July.

So, I'm asking for prayers for Bodie, for Sierra, for Dusk and I in the weeks and months ahead. Pray for more moments of peace and less moments of letting the fear, sadness and worry creep in. Prayers that we might take our fears captive and turn them over to God, the ONLY one who can bring us peace amidst the fears.

This morning, on my run, the song "Blessed be your name" came on my Pandora station and it totally made me smile, to know that, even in the midst of my morning run, God was meeting me where I was and sending me a moment of peace. I remembered singing this song in church when Dusk and I were newlyweds, praising Him for the blessings of a new husband and a life together. And I remembered singing it after we suffered miscarriage after miscarriage, singing it with tears streaming down my face, praising him through the pain and confusion, thanking Him for having a plan when we couldn't see it. And this morning, I sang it on my run, praising him through the fear and the darkness, through the uncertainty.

Please pray alongside me that God continues to minister to our family, bringing us subtle reminders to trust in Him and lean on Him, and praise Him whether in the easy, light parts of this path He has asked us to walk, or the darker scary parts. 

Blessed by Your Name 

(by Matt Redman)

Blessed Be Your Name
In the land that is plentiful
Where Your streams of abundance flow
Blessed be Your name

Blessed Be Your name
When I'm found in the desert place
Though I walk through the wilderness
Blessed Be Your name

Every blessing You pour out
I'll turn back to praise
When the darkness closes in, Lord
Still I will say

Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name

Blessed be Your name
When the sun's shining down on me
When the world's 'all as it should be'
Blessed be Your name

Blessed be Your name
On the road marked with suffering
Though there's pain in the offering
Blessed be Your name

Every blessing You pour out
I'll turn back to praise
When the darkness closes in, Lord
Still I will say

Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name

Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name

You give and take away
You give and take away
My heart will choose to say
Lord, blessed be Your name

Unofficially Official

Welp. We have an official cath date and officially "penciled in" surgery date, pending final cath results. So, we're calling it our "unofficially official" schedule.

Cardiac catheterization (where they check all pressures and confirm surgical plan, do any interventions they think will help his Fontan recovery (i.e. coiling any collateral veins affecting his pressures) and possibly attempt an ablation to reduce his EAT episodes) is scheduled for May 21st. It will require him to be intubated and should be an outpatient procedure, but as with all things Bodie, you just never know. Let me put it this way - I'll have a bag packed.

Fontan surgery date is scheduled for July 15th. More details on that forthcoming. For now I will just say it will be open-heart surgery, requiring bypass, intubation, life-saving drugs, the whole nine years. Not as difficult as his first surgery, but scary stuff nonetheless. For now, when people ask what will be done, my reply is generally "they're going to disconnect something and reconnect something else, and it has something to do with his Superior Vena Cava." At some point between now and July, I'm sure I'll provide a more detailed explanation. 

Hard to believe we're really doing this again, putting our sweet boy through all of this.

Ugh. We really covet your prayers in the weeks and months ahead.

Having officially scheduled dates makes this whole denial thing a touch more difficult. Gulp.

Just me and my girl

Sierra has Spring Break this week. Bodie's preschool is still in session. Sooooo...we took advantage and sent Bodie to preschool today while Sierra and I had a "Sierra-Mommy play day." It was an action packed day, entirely focused on Sierra. With Bodie around, it's hard for Sierra to get a lot of attention focused on her, since Bodie is, well Bodie, and is likely to inflict bodily injury on himself if I turn my attention away from him for more than 5 seconds (and even then, 5 seconds is sometimes enough)! So, what joy it was today to just focus on HER.

First, we grabbed hot chocolate and pedicures (and ran into one of my best friends, Jen, at Peet's as she was grabbing coffee before work - what a wonderful surprise since we've been trying to connect for months!)...

Then, we ran my car to the dealership for its 5,000 mile maintenance. Ok, so this is a bit of an aside, but HOLY COW Marina Toyota is awesome! Not only did they do the maintenance in record time (in and out in about an hour), they washed my car and ordered a replacement sunshade for Bodie's window, telling me it was "under warranty." Let me tell you, this was no warranty issue - this was a 3-year old getting his hands all up where they shouldn't have been issue. SO nice of them! 

Waiting for our car to be done...

Then, we grabbed lunch at Johnny Rockets. Sierra asked me if it was an "old school" restaurant. After her excitement earlier this week upon discovering that, at age 36, I am "almost 100, mommy!" I'm not gonna lie, my self esteem may have taken a tiny hit this week. ;-)

Then, we headed to Nordstrom Rack to do some shopping. What can I say? Shopping is kind of my language of love. Blame my mom - some of my earliest memories are of shopping the big sales with her. I love clothes shopping, and I'm thrilled to pass the gene onto Sierra (her future husband may feel differently, but that's ok - that will be his problem, not mine! Ha!)

Her special find - a headband in the bargain bin! (Thankfully, she's still young enough that she doesn't yet know bargain bins aren't "cool" - I distinctly remember when I realized running straight to the sales rack with my mom wasn't cool! Ha!)

Then, it was off to the movies, to see The Crood's. Super cute - a little mature for Sierra's age, but I found it hilarious. She liked it as well, although I think a lot of the humor was over her head.

Finally, we finished with ice cream at Ben & Jerry's. We sat outside, enjoyed the beautiful sunny day and dipped our hands in the fountain when we were done.

Just an overall awesome day. Yes, way more expensive than I had planned when I suggested we have a "mommy Sierra day." And yes, I know it's about giving your kids your time and not about what you buy for them. And she didn't need me to spend this much money on her today. But I guess I would say "walk a mile in my shoes. Face what we're facing this summer. Try to daily balance not giving too much attention to a medically fragile child at the expense of his sibling. Oh, and make this kid Bodie who still wants mommy more than anyone else on the planet, making it hard to break away with just Sierra. And then fine, you can come back to me and tell me I should have done things differently." Until then, given that we really don't get these kind of days very often, I'm gonna go with it was totally justified. And yeah, I may be working a few more hours next week to fully justify it. ;-)

And in other news, we have a penciled in surgery date for Bodie's Fontan. But we're not talking about it right now, because then I might have to start projectile vomiting right here right now, and no one wants that. More on that later.