An anniversary

2 years ago, today, we took handed off our sweet boy who looked like this…

And hours later, were given back a boy who looked like this…

And so began a tumultuous recovery from what should have been his "final" open-heart surgery for the foreseeable future. A year that included an additional open-heart surgery 3 days later, a pacemaker site infection 5 ½ weeks after that, repeated hospital stays, a 6-week course of iv antibiotics and 2 cardiac catheterizations before he was finally thriving. Not the result we expected from his Fontan.

But even so, we celebrate Bodie's "Fontanniversary." Because the Fontan was the final planned step to get him to where he is today. Because we always knew it was coming, from the moment we found out about his special heart when I was 17 weeks pregnant. Because it was a journey to get to it. Because we thank God that Bodie was a candidate for the Fontan, that he thrived in spite of a year of struggling post-Fontan, and that his body is tolerating the Fontan circulation so well now.

And because way too many of his friends haven't made it this far. Friends like sweet Joshua, who would have turned 5 tomorrow, but lost his battle with HLHS way way too early; and gorgeous Hayden, who went to be with Jesus unexpectedly following his Glenn surgery 3 years ago today. 

And because other friends have had their Fontan, and have struggled. Friends who are struggling across the country right now. Friends like Xavier and Hughes. And friends who struggle just to get to their Fontan and may not be eligible once they get there. Friends like Tyler and Michael.

We celebrate every step in Bodie's journey. Because we know we cannot take any of them for granted. And we don't.

Today, we celebrate Bodie's Fontanniversary. 

With a big, fat ice cream sundae after dinner at Soup Plantation (which, thankfully he was swayed toward, after initially choosing McDonald's!) 

Which was only after the fresh baked cookies they brought us when they heard what we were celebrating.

Bodie, we love you SO SO MUCH. And we will always be here to support you and love you, wherever this CHD journey takes you.

And we are so proud of you (even if you did embarrass the crap out of your mama yesterday when you yelled "I have LIIIIIIIIIICE!" at the top of your lungs as a war cry as you cannonballed into the public swimming pool!) 

Thanks for keeping us on our toes! 

Wide, open spaces

The kids and I are wrapping up a whirlwind trip to Boston and South Carolina. This trip has been wonderful, challenging, and, more than anything, eye-opening.

Bodie's evaluation at Boston was both reassuring and overwhelming. We're choosing not to share the details of his results here, both because we'd like to try to keep some things private - and because, quite frankly, we're still processing it all. In a nutshell, Bodie looks really good for what he has been through. But frankly, he still has a ways to go. Kindergarten, and to a degree, probably all formal schooling, will be a challenge for him - for us all. But Boston gave us a lot of recommendations for ways we can make his transition smoother, and come alongside him. (That said, fellow heart moms, if you'd like to know the specifics of what we've seen with Bodie, and what we learned in Boston, feel free to email me at amykbennett@gmail.com - I am more than happy to share what we can to make your journeys with your heart warriors a little easier.)

But the aha moments for us didn't stop at the clinic in Boston. They have continued down the coast to South Carolina, in long car rides, over bottles of wine with one of the wisest women I'm privileged to call my friend and "closest thing to a sister I have," Valerie (more on that in a separate blogpost!). 

Probably my biggest takeaway from this trip is how much both of our kids, but especially Bodie, need time to decompress. I have seen huge differences in the kids when they are given some time to themselves, to stop and process things. 

I have been running our family at a breakneck speed for as long as I can remember. I say "I" and not "we," because it truly is all me. Dusk has been asking me to slow down for almost as long as I have been running - and I always say "I don't have time to slow down - later" over my shoulder. 

Our son was born with a massive heart defect. 

I slowed down because I was forced to, but picked right back up THE SECOND things leveled out.

Our house burned down. 

I sped up.

Dusk had a heart attack. 

He slowed down. But not me. 

After his heart attack, Dusk sat me down and told me I NEEDED to slow down. That he wasn't sure why God was asking our family to slow down, but that He most definitely was. It took a heart attack for Dusk to understand that and slow down. 

I remember Dusk saying 

"It took a heart attack for me to slow down. WHAT will it take for you to slow down???"

I think we just found the answer.

It took a trip across the country.

It took two days of tests and a 2 hour conversation with a doctor telling me how deeply my son is struggling.

It took observing my children 24/7.

It took hugs and snuggles and lazy days. 

It took breaking up more backseat fights that I can count.

It took a long, hard look at myself. 

But I get the message.

Our family needs a slower pace of life. Wide, open spaces to just BE. 

Less over scheduling. Less activities. Less trips out of town (if you know us, you know the kids and I are out of town at least once, if not 2-3 weekends a month, even during the school year). Since school got out in mid-June, we have been home 1 weekend. 

We live in a big city. Right now, we can't give our kids wide-open spaces, room to run. But we CAN give them wide-open spaces in our schedule. Space to be. Space to read the Bible, and draw closer to one another and to God. Space to play. Space to decompress. Space to stop running from whatever it is we're running from.

So, when we fly back this week, we'll be embarking on a new adventure for the Bennetts. One that, to be honest, is uncomfortable for me. I'm used to going nonstop, but we won't be. I don't even know how to say "no," but I'll have to learn. We don't know exactly what it will look like yet, but we know for sure we won't be taking family trips out of town for quite awhile. We'll be working on readying our family for the school year ahead, on carving out space for our sweet boy to do what he needs to do, how he needs to do it, to heal emotionally from everything he has been through. 

This a space God has been calling our family to for some time. It's just that, for the first time, I'm finally hearing it. I cannot wait to see what God will teach us through this. 

Thoughts on Boston

Bodie is currently on his second morning of testing here in Boston, and in between the appointments, the kids and I have been having a ball here in Boston, doing just about every big touristy thing we can! Yesterday alone, we walked over 9 miles! Needless to say, we will be dragging ourselves onto the plane to South Carolina this afternoon!

Lots more on our Boston experience later (when I can wrestle the laptop away from Sierra!), but a few initial thoughts on Boston:

1. This city is beautiful. I mean, absolutely gorgeous. The history, the landscape, everything is breathtaking. I understand why people come here for school or a job and never leave.

2. The people of Boston are amazingly nice. I did not expect that, to be honest (not sure why, I just didn't - maybe because you hear about the "hospitality of the south" more than the northeast?). They have so much pride in their city (kind of the polar opposite of Los Angeles, where the cool thing is to complain about it!). The excitement at the Red Sox game last night was palatable - it was impossible not to be giddy with everyone else! And everyone who helped us (the servers at restaurants, cashiers at stores, etc.) Were so so nice and accommodating - they Really went out of our way to make sure we were happy and taken care of. And people actually let you in traffic (I know, crazy, right??? I'm used to LA, where you risk life and limb just trying to merge!)!

3. Ok, guys, notwithstanding points 1 and 2 above, would it kill you to have street signs??? I'm not afraid of traffic (thanks to years of LA traffic), but it is freaking impossible to drive in Boston. Even WITH GPS and my maps app, I still got lost multiple times. My GPS would be telling me to turn, but there'd be no street sign to confirm that I was in fact turning onto the street I was supposed to be turning onto! Ha!

4. "It's not the heat, it's the humidity." <- clearly spoken with the City of Boston in mind. Enough said.

All things considered, we have loved Boston and it has for sure been one of the highlights in an already great summer!

The scars you don't see

“Scars have the strange power to remind us that our past is real.” 

― Cormac McCarthy, All the Pretty Horses

We were at the fair yesterday, me and the kids - and I grabbed Bodie's hand to try to keep him from running away from me. I looked down at his little hand, seeing the light glinting off his little hands and wrists. And once again I saw the faint lines on his wrists, a nonchalant reminder of so, so many hospital stays.

An untrained eye probably wouldn't even look for them, let alone know what they were if they saw them. But a parent who has been there knows. A parent who has held tiny hands connected to tubes and wires. I see the tiny lines. And I remember the cuts that made them. The cuts that brought life-saving drugs into my child's body, time and time again.

They're cut-down lines. At least I think that's the term (or maybe not - but I heard it somewhere in reference to his lines). Whatever it's called, it's where iv's and lines have been placed and removed. Bodie has them in his wrists, in his groin, in his neck. Heck, probably other places I've never thought to look. But his wrists are the most prominent. 

Everyone knows about Bodie's central incision scar, and his chest tubes (those honestly are worse than the central incision!) and pacemaker scar. And, thanks to consistent use of doTERRA essential oils and good ole fashioned time, they're looking pretty darn awesome.

Right???

But it occurred to me as I looked at his wrists that he has so many other scars that aren't so obvious. The  tiny marks on his wrists, neck, shoulder and groin. The ones on the inside - where his heart has been broken and mended, where it has been cauterized chasing an arrhythmia that wouldn't be caught. The ones on his mind, on his soul. The ones we can't see, but we're trying fervently to help him heal. Nothing like going in blind, right? 

So.Many.Scars on Such.A.Little.Body. 

We leave tomorrow morning for Boston, to take the next step in working on healing some of the scars we can't see. 

Tonight at dinner, we talked about it. And Bodie looked all over his body, trying to find more scars. And we talked about what scars are - just proof of something he has battled, something he BEAT. 

We'll take that any day. 

And besides, chicks dig scars. 

Thank goodness for that.

Boston Bound

As the parent of a medically fragile child, I feel like the battle to advocate for your child never really ends, even when it's not at the forefront of your mind. This is one of those times.

You may have heard that the kids and I are headed to Boston this weekend and it's true. We're headed to Boston Children's, to have some specialized testing done on Bodie, and then heading from there to South Carolina, to catch up on some much needed time with some very, very dear friends!

I have had several people ask me why we're flying all the way to Boston to have Bodie tested, when he's doing so well. And if it means we're leaving CHLA or are somehow unhappy with our team there. And those are totally legit questions. He IS doing well. Really, really well. Physically, we're on good even ground. He's on a 3 month visit schedule with his cardiologist and weaning down nicely off of his Sildenafil. He's even in a good space electrically, with less EAT than we saw a few months ago. Things are nice right now.

But he's headed into kindergarten, and, for a lot of complex chders, the school age years are where the rubber meets the road, where the physical issues fade to the background (for a time, at least), while the emotional and intellectual issues take the focus. Sisters by Heart recently shared a wonderful article written about this very subject, which you can read here and which gives you a really good idea of some of the things Bodie is up against. 

But for us, it's more than a risk. Bodie is such a sweet kid - and so stinking smart. And very, very funny. We love him so much. But, we have seen things with Bodie that are red flags for us - impulsiveness, anxiety, low frustration tolerance, and on and on. Honestly, all of what we see in Bodie could be normal 5-year old boy stuff. But all of it also lines right up with what you expect to see in children who have been through what Bodie has been through. Heck, it's stuff you expect to see in kids who have been through less than Bodie.

Luckily for us, and many heart families like us, programs are sprouting up across the country that deal with exactly this - the neurological and emotional impact of complex congenital heart disease. There is a growing body of evidence suggesting that the complexities of children with complex congenital heart defects are often missed by traditional therapists, so the focus is amazing. Programs that provide evaluation, and support, and resources just for kids like Bodie! It's exciting and wonderful that these resources exist. 

Unfortunately, we don't have any such programs out here near us yet. So, we have to travel to have Bodie evaluated. And, since we have to travel anyway, we figured we'd go to the best, which is Boston Children's. 

So, Bodie is going to be evaluated by BCH's Cardiac Neurodevelopmental Program next week, which provides comprehensive, evidence-based neurodevelopmental assessment, second opinions, consultation and intervention services by a team of specialists, all of whom are focused solely on cardiac kids like Bodie. 

We're really excited to hear what they have to say, and, more than anything, to walk away with some concrete suggestions of areas they expect Bodie to struggle in school and HOW specifically we can help him, how we can discipline him effectively, and how he can best thrive. How great is that???

And why are we doing this now? Partly because right at the cusp of his educational career made the most sense. Why not get ahead of the ball and set him up early for success, rather than waiting until he's been struggling for a few years? And, honestly, partly because, thanks to Dusk's heart attack, we've already hit our out of pocket insurance maximum for the year, so why not? We have to take the good where we can get it! Ha!

We leave Saturday and we appreciate prayers for travel mercies and sanity for me (I am traveling alone with the kids while Dusk mans the fort back home!), that Bodie is cooperative during testing (please oh please oh please) and that we get some answers for our little man! We have worked so hard to get Bodie to this point. We've fought for his life - now it's our turn to help him make that life the best it can be. 

Our Karin

So, this is Karin.

I'm sorry, let me correct that. This is OUR Karin.

She's kind of amaze balls. I mean, totally. 

She loves our kids. They love her. She loves us. We love her. It's really one big love fest.

No, seriously. She came to us on recommendation 3 years ago as a babysitter. And, over the course of the past 3 years has become so, so much more. Yes, she babysat our kids so we could go out on dates. And anniversary trips out of town (if you know Dusk and I, you know we don't trust many people to watch our kids overnight, but Karin is at the top of the (very short) list). 

But she also was one of Bodie's first sitters when I went back to work, encouraging him to be ok with mommy leaving, and loving on him a little more when he wasn't.

And she also took Sierra to the American Girl store for lunch. And shared her love of the dolls and stories. 

She taught our kids about Jesus, and read them Bible stories, and sang praise songs with them. 

And spent the night at our house before Bodie's recent dental surgery so that Sierra didn't have to get shipped off to a friend's house at our call time of 4:30am (yeah, Karin - sorry she jumped in bed with you!). 

And visited Bodie in the hospital when he was recovering from the Fontan, and blessedly distracted Bodie while I went into the bathroom to cry because they were putting him back on oxygen.

And came and played with the kids and swam with them in the pool at the hotel days after our fire, when our heads were spinning and Dusk and I didn't know up from down.

And watched our kids and held them together when Dusk and I were at the OB's office, getting ready for my D&C last summer.

She has been our safety net, the calm in the midst of the ridiculous number of storms thrown at us over the past few years. We thank God so much for placing her into our lives exactly when He knew we would need her most.

She has gotten to know our kids, their likes and dislikes, strengths and weaknesses.

She has gotten to know me and my eccentricities, which is probably a harder task than getting to know the kids. (Anyone who knows me knows I'm not kidding - I once refolded a load of laundry in front of my mom because she didn't fold it the way I usually do - perhaps eccentricities is too nice a word. Control freak might be more fitting? But I digress…Let's just say that I never had to refold Karin's folding jobs! Ha!)

Last summer, when we were in a rental home and dealing with the aftermath of the fire and things were overwhelming, she kept our household running on days I went to work. She just intuitively knew what I needed, what our family needed, and was THERE.

I think everyone in Karin's life feels like she's "their" Karin. She has that special gift, that way of making people feel like the most important people in the world.

But we know the truth - she's really ours. 

We love Karin. And she's leaving us. 

We had our last dinner with her tonight. 

In LA, everybody leaves. It's the big giant ball of fun that living in LA is. 

But she's leaving for NOT the typical reasons (you know, not wanting to live in a shoebox, not wanting to sit in the car for days on end, etc etc.). 

She's leaving because God has called her and she said "yes." She is leaving to homeschool missionary families in Mozambique.

How amazing is that???

This beautiful young lady is taking a year out of her life to go heed God's call. We can only hope our kids will have such a love of God and His calling when they grow up. 

And we couldn't be more proud of her or excited for what lies ahead.

And, ok, more than a little sad because we won't have her here.

Please join us in wishing Karin well and praying for her in the year ahead. Pray for God's guidance, for travel mercies, for peace - and for Him to bring her back to us soon! 

We love you, Karin! 

I don't know how to do this.

I thought I had this all figured out, this whole parenting a medically fragile child thing. 

I figured out how to be pregnant with a child with an unpredictable future. The scary parts, the uncertainty. I learned to deal with it, to remain cautiously optimistic for my baby's future, for all of our futures. I learned to focus on the kicks, the rolls, the reminders that my sweet baby was safe and sound inside of me. 

I learned how to be a parent to a newborn, an infant, in and out of the hospital (ok, really, just "in," punctuated by a few brief respites on the outside). The constant worry, the multiple surgeries, the beeps and alarms of machines, the constant and steady hum of life inside of an Intensive Care Unit. I learned to live life one day at a time, to anticipate the roller coaster and enjoy the highs as much as I could.

I learned how to parent a medically fragile toddler, celebrating milestones a little later than his peers. I worked with his pediatrician, his nutritionist and his cardiologist to get him finally, blessedly, on the growth charts. I navigated the regional center system, and added therapists and learned the difference between a "developmental preschool" and a "traditional preschool." I learned the buzz words. And I watched him grow and thrive.

I learned to walk beside my preschooler, watched him try his hand at traditional preschool, watched him excel in some areas and still struggle mightily in others. I saw him through another open-heart surgery, and learned to gauge how much to speak about in front of "listening ears." And last month, I watched him don a cap and gown and graduate from preschool, ready to take on the world of kindergarten.

None of this was easy. It was fraught with fears and failures all along the way. But my husband and I, we figured this out. We got a handle on what it means to parent a medically fragile child and all the ways it was different than parenting our typically developing older daughter. 

And now, we stand on the precipe of his elementary school years, and I realize I have no idea how to do this. I have NO idea how to parent a medically fragile school-aged child. I mean, I really don't. 

I am so beyond grateful to be standing at this place, because we were never given any guarantee we would get this lucky.

But, truthfully, everything is about to change. 

For us. For him. For his teachers. 

And I am terrified.

We will have to start letting go a little bit. Yes, this is true of every kindergarten parent, but is even more so when your child has a major complex medical condition. It is SO hard to let go of the constant surveillance and monitoring, to let someone else step in and do that for you.  I will have to start relying on a teacher to know him well enough to know when he is looking "off." We will have to start having discussions about 504 plans and whether his school has an AED on site. And, most of all, we will have to watch him start to figure out how to live amongst typical peers with this big huge thing that has fundamentally shaped his formative years in a way they cannot even grasp.  

We will have to start scheduling doctor's appointments not whenever the doctor is available, but so as to miss the least amount of school possible. And have to face what will likely be missed days of school due to viruses. Bodie fares pretty well with viruses in general, but with a half a heart, every virus has the potential to take him down quickly and mercilessly, possibly landing him in the hospital. 

Learning difficulties are very common among school-aged children with complex congenital heart defects, particularly Hypoplastic Left Heart Syndrome. Things may be difficult for him that are not for his peers. He may have trouble organizing his thoughts, his writing, his priorities. He will have to learn to compensate for all of this. 

He will have to know his body, and what limits he needs to set for himself. How hard he can play. How fast he can run in PE. And, more than anything, as he becomes more aware of his heart and what it means, and how it makes him different from his peers, he will have to decide how much of his story he wants to share, and with whom. And when not to internalize it when others aren't receptive to his story. That's A LOT to ask of a 5-year old. I think it is this self-awareness piece that scares me the most.

Every bit of his journey thus far, I have been able to walk with him. I have been able to protect him where I could and to love and encourage him where I could not. But the start of his elementary school years mark the part of this journey that he will walk alone, that will be uniquely his. 

And I am not ready for this part of parenting a medically fragile child. 

Not.one.little.bit.

But I know I will figure it out. And so will he. 

Just as I figured out how to remain upbeat when a doctor has just told me my baby would be born with a half a heart. Just as I learned to find hope amidst multiple open-heart surgeries and prolonged ICU stays. I will figure this out as well. 

I will reach out to hold the hands of my fellow heart moms, the ones who have walked this journey ahead of me and who are walking alongside me right now.  I will learn from their experiences.

I will seek solace and support in my friends and family, who have held my hand and prayed over our sweet boy all along.

Together, we will help pave this next part of Bodie's path for him.

Because my little guy, weak heart and all, is counting on us to figure it out. 

And I am not about to start letting him down now.

He has risen to every challenge we've placed in his way.

So now it's time for me to meet his challenge. 

Nailed it.

Some days, I feel like my life is one giant Pinterest failure. 

Like someone could follow me around creating "Nailed it" memes about my Pinterest failures.

Today, I got to experience another round of me vs. Pinterest. You can guess who won. The same one who always freaking wins.

Sigh.

So I have been reading all about how important it is to keep kids on a schedule for the summer, keep them reading and working on math and grammar, etc. And I've been seeing all these cute and creative schedules and thought "How hard can that be? I could totally do that!"

Mistake #1.

After lots of Pinterest searching last night, I came up with THIS schedule. 

I was pumped and ready to get these kids started off on the right foot for summer.

When I got home at 7:15am from the gym, both kids were awake and were happily enjoying "Free Play" (aka messing the house up).  Meaning I walked into a house that already looked like a tornado had swept through. Some parents of young kids are totally cool with their house looking like a frat house. 

Let's just say we're NOT those parents. 

(Obviously. Those parents don't have THIS schedule. Duh.)

Free time before work = Mistake #2. Seriously, WHAT was I thinking???

They then spent the next hour and half screaming, fighting and inflicting injury with and onto one another instead of cleaning up. Very quickly, they were both in time out (multiple times) and I was headed there myself, since I may or may not have been taking my frustrations with them out on Dusk. Oops. Sorry, hun.

Then, we went to Bodie's ENT appointment, which Bodie protested mightily over. Apparently, he had an issue with "Free play; go outside time!' being a visit to the doctor's office. Picky, picky. 

Then we came home and the kids ate lunch while working their way through their schoolwork. Sierra breezed through her worksheets like a champ. Bodie, on the other hand, quickly got a handle on words like "cat," "sat," and "hat."…and then lost his mind when I tried to get him to figure out "at." (A word he already knows.) As in, lying on the floor crying in fetal position because "I CAN'T FIGURE IT OUT, MOMMY!!!" So, he got halfway through his first sheet before I decided enough was enough, and it was time to jump straight to quiet reading time.

Which was, quite honestly, complete and utter bliss. Sweet silence. No fighting. No hurting each other. No screaming about not understanding easy words. Just happy reading. YES.

And then we moved onto craft time. My bright idea was to make library bags to put our library books in (the kids are both participating in the local summer reading program). Except that they wanted to use the rotary cutter (um…NOOOOO Just NO) and use the iron (Sierra ok, but Bodie, NO). So…

Bodie's "craft time" consisted in him watching me make his library bag. 

At least he got to pick out the fabrics (all turtle themed - reversible with teenage mutant ninja turtles one on side).

  

And he really liked it!

And Sierra's "craft time" consisted of me stopping every 2 minutes to help her re-thread her sewing machine (ok, maybe not that often, but it sure felt like it). Her bag isn't done yet (I made Bodie's and had her make hers), but she's almost there. Hopefully in the next day or so she'll be done.

By then it was off to ballet for Sierra and back home for dinner. Which means we didn't get the "scheduled" clean up time in…so the house looked approximately like this when daddy got home from work.

Oops.

So much for great summer schedules.

Ah well, there's always tomorrow, right? 

Does Pinterest give extra credit for effort? 

If so, we're golden.

If not, the schedule for tomorrow may just read:

"Bennett Summer Schedule

8am-7:30pm Silent reading (with some meals in-between)."

Working on that Colgate Smile

This little dude, the one with the adorable ear to ear grin, is headed in to get some work done on that trademark smile tomorrow. Some cavities filled, some teeth sealed, maybe an extraction.

I know, I know, it's just "dental surgery." The thing is, there's nothing little when it comes to a procedure on a medically fragile kiddo. As the dentist reminded me "it's just that it's soooooooooooooooo risky to put a kid with a half a heart under anesthesia."

Well, thanks for bursting my bubble that my child is just like every other kid. That's awesome.

But he's kinda right. Unlike a typical kid, who could have a couple cavities filled in a dentist's office, maybe with some laughing gas, Bodie's will have to be done at CHLA.
In the OR.
With him intubated.
And under the direction of a specialized cardiac anesthesiologist.
And will require pre-op.
And several hours of observation afterwards in the recovery unit.
With the possibility of admission always in the air, in case he gets squirrely.

Like I said, it's kind of not a little thing.

So we'd appreciate all the prayers you got.

Pray for BODIE, that surgery is smooth and without complications, that he's not in too much pain afterwards and that he's back in his own bed tomorrow night.

Pray for DUSK AND I, as this should only trigger approximately 9,999 different episodes of ptsd for us. Although this is for sure minor compared to everything else he's had done, it's being done in the same place as all the major stuff has been done. When that happens, the mind has a hard time differentiating between the major and the minor. So we're perhaps a bit more keyed up than we need to be. Prayers for peace would be awesome.

Finally, please pray for SIERRA, as she's again waking up to reinforcements, without mommy and daddy home (since our call time is 5:30am! Eek!), and is expected to go to school and act like everything is normal, when the 3 most important people in her life are all the way across town, doing something kinda big without her. Prayers for peace for her sweet little heart are much appreciated.

Thanks to our faithful followers!!! We're so blessed to have you on our team!

Milestones

Today, Bodie graduated from preschool. 

All 40 pounds of sweet exuberance, he jumped up on that stage, shook the director's hand and accepted that diploma. 

With his best friends there to celebrate.
Nicholas.

These boys. They are 2 peas in a pod. 

If a pod contained one really super well-behaved pea and one not so good pea.

(Nicholas would be the good pea. Obviously.)

Their relationship has been such a blessing for us this year. Bodie has really come out of his shell thanks to Nicholas, and always wants to know whether Nicholas is going to be at school before deciding whether to be excited about going or not.

Anika

Sweet Ani. She was Bodie's first friend at preschool, and, really, his only real friend last year. She is so sweet to him, and totally puts up with his silly antics. They are crazy together, and I'm so grateful she'll be going to kindergarten with him next year, to look out for him and keep him in line.

Mrs. Faith

One my absolute besties and such an incredible source of support not just to me, but to our entire family. We love her so.stinking.much.

GIGI!!!!

We LOVE Gigi!!! She has been there through everything.

And his amazing, incredible cardiologist on hand.

(I mean, really, how lucky are we to have her as Bodie's cardiologist? I could go on and on about her, but just suffice it to say, she's the bomb diggity. And her daughter is kinda the sweetest thing on the planet.)

And I welled up.

I know, I know, it's just preschool graduation. And I am always guilty of over celebrating (I am a firm believer that if life is not about celebrations, then you're not living it right. There is always always something to be grateful for, and something to celebrate.)

But I digress.

Today was about SO MUCH MORE than a preschool graduation.

It was about a boy, who against all odds, fought his way here. 

It was about a boy who doctors said wouldn't likely make it even to his second surgery, but who has been through 4 more since. 

It was about a boy who has had 5 open-heart surgeries, 5 cardiac catheterizations and countless hospital stays, blood draws and other procedures. I know we talk a lot about Bodie's surgeries - we talk about them casually, like they were ear piercings or haircuts. But they were open-heart surgeries, peeps. 

Open freaking heart surgeries. In addition to his surgeries, he has had so many complications and infections. Today, he thrives, but there were so many days we never thought we'd get to this point.

It was about a boy who cried almost every day last year at preschool, and this year opened up and thrived under the amazing tutelage of Ms. Mikki, whose love and patience for our sweet boy overflowed. 

(This was Bodie's reaction when I asked him how much he loved Ms. Mikki (and Sierra's reaction when I told her she couldn't have a cupcake!))

We have never been guaranteed a tomorrow with this boy. We have had many times where we were pretty sure we weren't getting a tomorrow. We have lived so much of his life never looking forward, never thinking about what tomorrow might bring, only focusing on each day and the challenges it brought.

When Bodie was initially diagnosed and I was 17 weeks pregnant, I never would have hoped to dream of preschool graduation.

When Bodie was inpatient for almost his entire first 5 months and doctors used words like "failure to thrive," "fragile," and "uncertain future," I never would have dared to dream of today.

And yet, here we found ourselves. 

With a little boy who woke up this morning, saying "Today, I graduate!!! Kindergarten, here I come!"

Yes indeed, buddy, kindergarten, here you come. 

Bodie, we could not possibly be prouder of you. Of your fight. Of your tenacity. Of your enthusiasm for life. 

Of you.

Sweet, amazing, preschool graduate you. 

Be strong, sweet boy. 

We will ALWAYS be here with and for you. 

To cheer you on. 

To love you. 

To CELEBRATE.

Pushing the limits

I think one of the biggest challenges in parenting a medically fragile child is knowing how far to push them. The simple answer is "as far as you can; they'll let you know when you've pushed too far." And, by and large, that is the approach we've taken with Bodie.

But, of course, as with all things in life, it's not quite that simple. At 5,  Bodie doesn't have the endurance of his peers. He just doesn't. I think my son is amazing and wonderful and has the endurance to do what he needs to do in life. But I'd be lying if I said he was "just like" all the other kids on the playground at preschool. He's never seen running around with the packs of boys. He's smart, and I think he's realized that he just can't hang with that. He gravitates toward riding trikes, where the differences aren't as noticeable - and to playing in the sand and on the jungle gym. 

I've been thinking lately about his endurance. It's not due to low oxygen saturations anymore (his baseline is around 95%, which isn't that different than his peers) - and he's not really ever winded anymore (in that regard, his endurance has improved). It's hard to blame his current heart condition for his lack of endurance, not when I know other post-Fontan HLHSers who can run circles around their peers. I think it may be because he's just never been pushed to develop the endurance. For the first 4 ½ years of his life, his oxygen saturations were 75-85% of his peers. Every ounce of energy his body had was used up to keep his body running. It's only been in the last year that he's had any extra energy for other endeavors. So he's never been asked to build any endurance - we carried him if he asked, we slowed down if he needed it. 

So, not only had his physical endurance not been developed, but he has a total mental block now on the physical stuff. He's scared of it. He doesn't THINK he can do it, so he won't even try.

But he's stable. It's time to start working a bit on building that endurance. 

It's time to give him the gift of a little more oomph. 

It's time to push him a bit. 

Not a lot. 

I'm not talking asking him to run a marathon. 

But I think perhaps he's capable of walking on a mile long family walk instead of being carried. Or keeping up when we're out running errands. Instead of whining that he can't and dragging his feet.

So today, on this beautiful day, I took the kids on a hike. I started with Bodie in his Tula (an absolutely awesome toddler carrier that works GREAT for him (and is MUCH easier on my back than just carrying him!). 

But then he wanted down to explore, so I put the Tula away.

And then we saw this. 

And decided collectively that we WANTED TO HIKE IT (it's not as far away as it looked - the picture just makes it look that way, I promise!).

I had planned on tula'ing Bodie when he got tired, but when we got closer, his energy was up and I realized he could do it, it wasn't that scary up close, and as long as we took breaks and let him go as slow as he needed, he'd be fine.

You can guess how he responded.

Acted like his legs didn't work.

Like he was totally incapable.

And that was on the flat part before the hill began. 

Seriously.

So we took it slowly.

And it was about the first hill in as he's literally thrashing on the ground and screaming that he can't do it and I'm standing over him telling him to "Stop whining. Yes you can, we will take it slowly - you only think you can't" that I see a familiar face coming over the ridge…one of our favorite attendings from CHLA out hiking with his family. 

O.M.G.

I'm sure he took one look at us and was like "Seriously!?!? This is why we save these fragile kids, so their parents can force them to do hikes they can't do??? What is she thinking???"

But here's the thing. Bodie CAN do it. 

Bodie DID do it.

We ALL did it.

And darn it, if that kid wasn't SO proud of himself for doing it.

And ran most of the way back down, before I gave him a lift back to the car on the Tula.

And he can't wait for the next hike.

Couldn't do it my a$$.

And we had a nice chat with the attending while we were out there. 

I don't think he's going to call CPS on us. 

I hope.